Food Allergy Support

Discussion Boards => Main Discussion Board => Topic started by: ajasfolks2 on February 03, 2013, 01:30:13 PM

Food Allergy Support is now on Twitter. Follow us @FASupport. You may also follow our Tweets in our new global footer at the bottom of the page here at FAS!

Title: Living with Food Allergies, 2013 and on
Post by: ajasfolks2 on February 03, 2013, 01:30:13 PM
Have been thinking about this for quite awhile, but am just spitballing this post, so it may not be perfect.  Thinking more as I type . . .

And please excuse the Intro & preamble, but I must include . . .

My family's history:

Pre-kid I already had some preservative-induced asthma and allergy -- mostly sulfites . . .
1st child had what are now understood to be OBVIOUS signs of serious food intolerance and allergy (extreme colic, breastfed, serious excema, obvious reax to what I ate, reax to some legumes in early solids).  Then child had massive BIPHASIC ana reax to first KNOWN ingestion of peanut butter at 11 1/2 months old.  Child is now age 14+ and is ana to peanut, tree nuts (nearly all), plus possib garbanzo and mango.  Also has latex allergy.  There have been reactions over the years, to varying degrees, to include skin-contact anaphylaxis and many "mystery" reactions.



2nd child diagnosed with peanut and (some) tree nut life-threatening allergy, but does not have the history of the ana reax.  Also has OAS to many fruits (cherries, peaches to name a couple).  NOT having the ana reax history may be attributed to the vigilance and avoidance . . . or this child may not be allergic to ALL that are diagnosed and/or in the same manner as child #1.

~ ~ ~


Once upon a time on a board far, far away we (this group of posters and MORE) had an entire board section dedicated to "Living with Peanut Allergy" . . .   (with bow down and thanks to csc . . . )

Many of us are now into our second decade (or longer!) of LIVING with Food Allergies (plural as may of us are dealing with multiple food allergies) . . . so perhaps we've forgotten how hard it is to be newer (or "newbie" to this life).

Once upon a time MOST of us posted in that "Living with Peanut Allergy" section a WHOLE LOT (or elsewhere with related worries, concerns, challenges, questions).  And now many/most of us "oldbies" have the luxury of having settled into a more routine life with LTFA (life-threatening food allergy) and perhaps have fewer day-to-day challenges.

And, yes some facets of life with FOOD (not just peanut) allergy HAVE changed for the better:
>  Food label laws with some rules and regulation, however demonstrated and enforced;
>  ADA amendment and 504 OCR rulings as well as 504 knowledge for school-age;
>  Food allergy awareness in the food service sector;
>  Increased awareness in the public sector so far as basics as to LTFA;
>  Massive increase in information (ranging from accurate to crap) availability, what with Internet expansion and social networking.



BUT I keep coming back in my mind and my heart to a NEED for a thread or discussion that is just about the day-to-day . . . that might generate a dedicated thread to a particular topic, but that also just allows for mulling and brief discussion with links to send folks to related in depth discussion, if needed.

A place to vent sometimes as well, but not necessarily in Off Topic.

Because, for gosh sake, LIFE THREATENING FOOD ALLERGY venting is ON TOPIC here.


So.

Here's my proposal:

Let's have a "Living with Food Allergy" thread in MAIN and then have it dated and split if needed into some kind of increment -- monthly, yearly, whatever seems best.


But *I* believe this is needed by the community at large here -- not just the oldbies, but the many newbies who are looking for NON-Facebook musings and discussions.


Whew.

There, I've said it.  Perhaps with verbosity.

But I felt it needed to be said.

And started.

Thanks for reading . . .

~e


PS -- This isn't just aimed at helping the newbies . . . many of us have perhaps fallen into a place of "coping" and COMPLACENCY.  This life of LTFA is a STAGES type of endeavor.

PPS -- With everlasting thanks to my DH for around-the-table discussion on this topic . . .  :heart:
Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on February 03, 2013, 01:34:47 PM
Great idea.
Title: Re: Living with Food Allergies, FEB 2013
Post by: ajasfolks2 on February 03, 2013, 01:38:25 PM
Make it better.  Make it happen.  Make it last.
Title: Re: Living with Food Allergies, FEB 2013
Post by: TabiCat on February 03, 2013, 01:56:33 PM
I'm not sure if this fits what you were envisioning for this thread but I'll start with a confession. I was thinking recently that as a family we have began to become TOO relaxed with living with food allergies. Yes I know that comfort zones change with our circumstances but I am not just talking about loosened comfort zone. We seem to be less AWARE and less intentional about food safety. That approach leads to a situation that is just flirting with tragedy. 

So as a family we are reevaluating things and this time DS (now 7) is playing a roll in that process. One of the truely sad things is the realization that this situation has been causing HIM anxiety. 
Title: Re: Living with Food Allergies, FEB 2013
Post by: ajasfolks2 on February 03, 2013, 02:04:59 PM
Thank you, Tabi !!

Magnificent first post for this thread!

 :smooch:
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on February 03, 2013, 02:45:17 PM
I agree, Tabi-- sometimes you just have to shake yourself awake again if it's been a long time since you've had a major wake-up call.



Hmm...

Well, a couple of things this past week:

a) asthma flare seemed to be related to aerosol exposure which was tightly controlled and seemed tolerable at the time.... but it led to 24 hrs of yellow-zone asthma that needed pretty assertive management.  Rethinking again about those kinds of exposures.  Maybe just scrupulously worrying about contact isn't enough.  I hate to think that, because it makes things a lot more restrictive... but...


b) got the first EVER real apology for setting my DD up for a situation like that-- see a above.  Seriously.  A phone call from one of the organizers to apologize and say that it won't happen again.  This was a first in over ten years.  I'm still trying to think of a way to thank this person for apologizing like that-- because I think it's important to recognize and point out just how RARE and meaningful such apologies are.

c) opened a conversation about inclusion, also related to a and b above.  Hopefully, this will improve things in the long term with this youth organization.  I intend to tread carefully and pay it forward BIG here.   :heart:
Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on February 03, 2013, 03:03:14 PM
I cooked lunch today and used some refried black beans--a new to us brand of them. It looked safe for PA DS. And mostly fine for me. The ingredients listed "spices " and sesame can hide there. I typically don't use new foods with that labeling, but I think it was a low risk situation for sesame. I just don't find sesame used in Mexican food really.

So....I used them, but instead of rinsing and recycling the can right away, I made sure I left enough in the can that I could send it to FARRP if I had a reaction.
Title: Re: Living with Food Allergies, FEB 2013
Post by: StrangeSpot on February 03, 2013, 03:03:32 PM
I am in such a strange spot in our 5 year food allergy journey.

Dd passed an IOFC, but is still having symptoms.  Just to give an example, a few months ago dd's tongue was itching so badly that she was crying and pleading with me to "make it stop".  I call the allergist's office (part of one of the best hospitals in the nation), and was told by the nurse that dd passed the challenge and that they do not consider her allergic.  My dh has made fun of me several times for watching her to make sure facial hives don't progress.  I have been labeled anxiety mom by the doctor for wanting to keep carrying the epi for a while.

We are getting a second opinion soon, but it's a very lonely place to be in.

I am thankful for this board.
Title: Re: Living with Food Allergies, FEB 2013
Post by: hezzier on February 03, 2013, 03:11:04 PM
Just to give an example, a few months ago dd's tongue was itching so badly that she was crying and pleading with me to "make it stop".  I call the allergist's office (part of one of the best hospitals in the nation), and was told by the nurse that dd passed the challenge and that they do not consider her allergic.  My dh has made fun of me several times for watching her to make sure facial hives don't progress.  I have been labeled anxiety mom by the doctor for wanting to keep carrying the epi for a while.


This would cause me to have major anxiety.  I would be doing the same thing and carry the epi as well. 
Title: Re: Living with Food Allergies, FEB 2013
Post by: TabiCat on February 03, 2013, 04:15:29 PM
I have been considering finding an allergist that is willing to give DS an oral challenge on PN. His allergist won't because of his RAST numbers but it feels odd to me that in 5 years he has had only 2 big reactions as a toddler and a handful of minor reactions to what we THINK was trace. Even his "big" reactions aren't what many of you have experienced.

I guess part of me wants to cling to the idea that he is a false positive or outgrown. His Dr say NO he is allergic. He does say he could be a good candidate for desensitization but he wants to see more long term results before recommending it.   
Title: Re: Living with Food Allergies, FEB 2013
Post by: ajasfolks2 on February 03, 2013, 04:39:05 PM
I sense there are many of us at potentially "second-guess" position so far as our allergist(s) or are ready to push to/for different (INDIVIDUALIZED!!) diagnosis and treatment. . . even while we advocate for minimal standards.


I'm not surprised based on the widely varying diagnosis and treatment of LTFA . . . not to mention the widely varying reactions and presentations of LTFA to begin with.

The "experts" don't have the "answers" . . . neither should we.

 :heart:
Title: Re: Living with Food Allergies, FEB 2013
Post by: hezzier on February 03, 2013, 05:01:43 PM

The "experts" don't have the "answers" . . . neither should we.

 :heart:

True but still hard to swallow.
Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on February 03, 2013, 07:22:53 PM
We are in that middle ground for the next few days.  DS went to the allergist and had testing done for the first time since June of 2011 when his peanut score went higher than it ever had. Before that, it had steadily declined, almost to the point of being considered for an IOFC (in office food challenge). 

But now--we wait.  I keep checking the patient portal--where we'll be able to see the test results.

I'm in the land of "he could have totally outgrown. It's possible.  What if the score is really low now?"

Of course, that's likely not what will happen, but it's kind of nice thinking about the possibility.  In a week, I won't be in this land.  In six months I won't either.  It's now--that interesting in-between time.

It's kind of nice being here and thinking about what if.

Title: Re: Living with Food Allergies, FEB 2013
Post by: ajasfolks2 on February 03, 2013, 07:40:51 PM
I am also getting the sense that many of us are in the market for a new allergist . . . or at least additional opinions as to diagnosis and prognosis and potential therapies or treatments.



My family is.

Title: Re: Living with Food Allergies, FEB 2013
Post by: momma2boys on February 03, 2013, 10:24:44 PM
Strangespot, I'm sorry you're going through this right now. It is sad that you are being treated this way by your dh and the Dr.   Trust you instincts and don't be bullied by them.    :grouphug:
Title: Re: Living with Food Allergies, FEB 2013
Post by: GoingNuts on February 04, 2013, 06:21:01 AM
Ajas, many thanks for resurrecting this thread.  It's a great place to come to express those moments that only those in the allergy world can understand and appreciate - and hopefully learn from as well.  :thumbsup:

Stangespot, I think you are spot on in your vigilance.  I'd be seeking a second opinion as well.  As Momma2boys said, stay strong, and don't be bullied.

DS is away at college, and in March will be going to Mt. Sinai to see Dr. Nowak.  I'm hoping that he'll be able to benefit from component testing (a different kind of allergy blood test that determines which part of the peanut you are allergic to - theoretically, if it is the protein most closely related to birch, then you are at significantly less risk for anaphylaxis, and may not have to be concerned with "may contains").

As for him being away at college, well, I haven't had this many food anxiety dreams since he was first diagnosed as a toddler.  ~)
Title: Re: Living with Food Allergies, FEB 2013
Post by: krasota on February 04, 2013, 12:24:56 PM
A thread on a preemie board discussing introduction of solids.  Some doctors recommend based on actual age, some recommend based on adjusted age and developmental readiness signs.  One of the reasons given for actual age:  eating is a social activity, so preemies need to not have that aspect of their development delayed.

And I cursed in my head.
 :banghead:

Nevermind the ways in which an infant who is not ready for solids can be involved in a family meal, but gah, food is so freakin' common in social events and this just rubbed me the wrong way and I skip freakin' town hall meetings in my city because they provide dinner and I stepped into a huge pile of peanut shells in the grass at a playground last week (also orange peels, so not a squirrel) and and and . . .

*sigh*
Title: Re: Living with Food Allergies, FEB 2013
Post by: SilverLining on February 04, 2013, 01:22:58 PM
I'm with you krasota.  No need to start that type of socializing that early.

Title: Re: Living with Food Allergies, FEB 2013
Post by: ajasfolks2 on February 05, 2013, 08:03:15 PM
Just saw a food allergy mom's homemade video demo of the Auvi-Q on Facebook!!

SOOOO easy! 

Both kids and DH have now seen video as well -- THRILLED!!!!

Title: Re: Living with Food Allergies, FEB 2013
Post by: mommabridget on February 08, 2013, 05:07:51 AM
We will be making a five hour drive one way today to one of the top research hospitals for food allergies.  DS is participating in a trial as a control only- so blood work on the agenda.  Then I have my own agenda: 1) a script for the new Auvi-Q!!!   2) question staff about the new testing mentioned above 3) listen to what is new in the allergy world (trials, research results, promising treatments/research people/etc). 4) listen, listen, listen!! 5) anyone have any questions you would like for me to ask?

Love this thread!  My DS is 19, diagnosed at age 1.  This is our reality and there are days where we are affected enormously and other days where it is such a non-issue!!  But, it is ALWAYS there, either way. 
Title: Can anyone recommend allergist (not ped. only) in St Louis area?
Post by: SwayGirl on February 08, 2013, 10:11:29 AM
I am also getting the sense that many of us are in the market for a new allergist . . . or at least additional opinions as to diagnosis and prognosis and potential therapies or treatments.

My family is.

Amazing how you read my mind--I came to the boards this morning to post just this. Or really, a plea for a lead on a new allergist who specializes in FOOD allergies in adults. The allergist I've seeing since being diagnosed last summer is...okay. But just okay. I've learned everything I really needed to know to figure out how to live with LFTA on a day-to-day basis from these boards, and other reliable websites. It's almost shocking to me when I think back on how little education I got from this doctor.

But the deal-breaker for me was this: On my last visit, he decided, seemingly on the spot, that I fall under the category of "idiopathic" anaphylaxis because I'd had a couple of reactions I couldn't immediately pinpoint the cause of. I felt at the time that the label didn't apply, as I knew for a fact that I had in the past reacted to tree nuts and to strawberries, both allergies which this same dr diagnosed me with just a couple months before. When I protested (politely but firmly) that I believed these latest reactions had a food-related cause but hadn't identified it yet, he got very curt and said, "So are you the doctor now? If that's what you think, fine, but why bother coming to me!"

And he proceeded to delete the idiopathic dx. I was shocked he switched the dx back again on a dime like that, and when I asked why, he said because I disagreed with him! The whole thing was really confusing, and didn't leave me feeling like I was in the right place for me. I don't think I can deal with a doc so touchy that I can't have a conversation or ask a question.

Sooo, longwinded way of saying HELP! Anyone know of a good doc in the St. Louis area who focuses on food allergies? From all the literature in the office and forms I had to fill out as a new patient, I definitely get the vibe that this guy is more environmental. I've searched the internet but haven't been able to identify a non-pediatric allergist who has a focus on food rather than asthma/environmental allergies. I'm surprised because we've got several good-sized med centers here.

Oh, by the way: I later discovered the source of the main mystery reaction. Pizza I had safely eaten many times had suddenly become unsafe for TN due to a change in the flour used to make the dough! (The other reaction didn't seem so mysterious to me--walking through a cafeteria where they were frying something in a wok. Turned around and walked out but was immediately dizzy and within 5 min was having the worst reaction I've ever had, featuring super-fun cardiovascular symptoms that were new for me. This dr said about this: "Hmm, I suppose it's possible that some allergens could become aeresolized when frying...but that shouldn't cause a reaction..."  :tongue: I know now that it's not typical, but I'd already had several minor reactions from airborne/contact situations. Just feel like I'm not comfortable with a doc who's going to discredit my experiences just because they are not typical.

I'd sure appreciate a lead on a better doctor!

Thanks!

Swaygirl
Almonds, Walnuts, Strawberries
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on February 08, 2013, 11:21:53 AM
I'd try one of the pediatric specialists, honestly.

They won't necessarily be able to offer a lot of day-to-day advice for adult living, but as you probably know-- few allergists can do that meaningfully anyway.

At least a pediatric food allergy specialist will be able to relate well on your needs as a patient, and will likely have broader experience with food allergic people in general... ergo, s/he will have seen at least a few people with that kind of sensitivity.

Title: Re: Living with Food Allergies, FEB 2013
Post by: hezzier on February 08, 2013, 11:41:34 AM
Swaygirl- I sent you a PM
Title: Re: Looking for New Allergist
Post by: SwayGirl on February 08, 2013, 12:06:34 PM
I'd try one of the pediatric specialists, honestly.

Gosh, that never occured to me. I guess I didn't think a ped allergist would even see me, although I have no doubt I'd have much better luck finding one with more experience with FAs. Also, as a bonus, my kid would be wildly amused by the sight of me going to Children's Hospital for my dr appts!  ;)

Do you really think a ped specialist would see an adult?

Thanks for the idea!
Swaygirl
Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on February 08, 2013, 04:07:00 PM
I went to one at Duke. 
Title: Re: Living with Food Allergies, FEB 2013
Post by: Lisa on February 08, 2013, 06:09:59 PM
I know my kids' pediatric allergist offered to test me for insect venom allergy, so I think many would be amenable.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on February 08, 2013, 07:01:58 PM
Yes, we all see the same allergist-- he's a generalist, but his background in pediatric food allergy is superb. 



Today I spent an hour looking for a particular brand of Ramen noodles.  I went to three different stores.  All contain multiple brands, but NONE the one I need.  Such is my life.  Bleh.

Title: Re: Living with Food Allergies, FEB 2013
Post by: GoingNuts on February 10, 2013, 03:24:58 PM
Woke up at 5 AM with heart pounding, gasping for breath.

I had been dreaming that someone sent DS (who is up at college) a package with cheesecake brownie squares (?) that had different fillings.  He just bit into them without thinking.  One was filled with peanut butter.  He called me frantically, because he wasn't sure what to do.  I was talking him through it, while calling 911/University police on the other phone. 

Oy, a little FA anxiety, eh?
Title: Re: Living with Food Allergies, FEB 2013
Post by: SilverLining on February 10, 2013, 09:05:08 PM
GN, allergy nightmares are the worst!
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on February 10, 2013, 09:29:39 PM
I hear ya.

I'm waiting for the airplane dreams to start.   :hiding:
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on February 12, 2013, 10:53:15 AM
So today I will be:



And all of this time, there is a part of me wondering if other people travel without really even THINKING about this stuff... and knowing that they do not, I'm puzzled.  What does that feel like??  To not worry about being able to feed yourself/your child safely?  What are other people thinking about before a major trip overseas??
Title: Re: Living with Food Allergies, FEB 2013
Post by: PurpleCat on February 12, 2013, 01:19:59 PM
Ironically....When I went overseas a few times before marriage and way before allergies...my biggest planning was:

To change some currency for the start of my trip
to buy a few cans of tuna and a jar of peanut butter!!!!!
pack

Yep!  Peanut butter!  And boy was I glad to have it a few nights when my destination did not allow for a meal.  I could always find some kind of bread or crackers.  I ate a few meals that way!  Tuna was a pain because I did not have a can opener - LOL - that's not an issue anymore  :misspeak: really?  I'm that old??? :misspeak: no flip top, packet or pull off cover?
Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on February 13, 2013, 11:31:13 AM
Did not even open before deleting. Believe me--my eating shrimp is the OPPOSITE of sexy. Quite.

(http://i20.photobucket.com/albums/b205/McCobbre/01BDC59C-0172-4AFF-8AD1-71A349660CF6-149-0000001345EFE5DD_zps70a39ac8.jpg)
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on February 13, 2013, 11:52:40 AM
Well, that dinner might be a lot of things, but "lovely" probably isn't one of them.  LOL.

Yeah, calling anaphylaxis "sexy" is.... well, that is really, REALLY-- REALLY creepy and weird.

I don't often offer imperatives in doling out advice.  But here goes.

Run away from someone that thinks that anaphylaxis makes you more "romantic" in any way.   :hiding:

 
Title: Re: Living with Food Allergies, FEB 2013
Post by: ajasfolks2 on February 13, 2013, 07:30:04 PM
It is BEYOND WONDERFUL to not be dealing with stupid bleeping school Valentine's parties tomorrow and the candy stupidity and the Cupcake Queenies.

Yeah, baby!

 8-)

 :nocupcakes:

Title: Re: Living with Food Allergies, FEB 2013
Post by: TabiCat on February 13, 2013, 08:09:27 PM
If only !!!
Title: Re: Living with Food Allergies, FEB 2013
Post by: joanna5 on February 14, 2013, 06:11:36 PM
What gets me is how even now, after eight years of managing D's allergies, it just feels like every.freaking.thing in life is about food.  Not even that it's everywhere, although it is, but that everything that happens we have to filter through the FA lens.  We moved this summer.  My oldest isn't one to make friends quickly and was thrilled to get a call to invite him for a playdate... which is great, but means you have to have the awkward allergy conversation.  Another friend asked if he wanted to go to a local baseball camp over vacation and carpool.  Again, great, but there are emails/phone calls involved. 

(Ironically, both worked out beautifully, but it's sad that even in the best case scenario, it's still all about the FAs.)
Title: Re: Living with Food Allergies, FEB 2013
Post by: GoingNuts on February 14, 2013, 08:13:50 PM
Joanna, I hear you.  Everything is viewed through that lens.  Everything.

This morning when Inheard about the American/US Air merger, my first thought was, "how will this affect their allergy policy".

My son is I college, so I'm not arranging play dates anymore, but when we spoke earlier and he was telling me about upcoming plans, my first thought was about how food would play into it, how wou ld he handle it, etc.

I hate these damned allergies.  Just hate them.
Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on February 14, 2013, 09:29:22 PM
US Air has better policies for peanut than American, but not by much. It TNA folks that have to worry about both.
Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on February 15, 2013, 06:52:06 AM
What's the worst thing my husband could do for me on Valentine's?  Take me out to dinner. I can't imagine anything more stressful.

Fortunately he created a beautiful meal at home and a stress-free Valentine's Day!
Title: Re: Living with Food Allergies, FEB 2013
Post by: Janelle205 on February 15, 2013, 09:28:43 AM
Agreed, Mac - I have a decent number of safe restaurants here (as long as I order the same thing every time, which luckily are things I really enjoy), but I would not want to go out on Valentine's day - WAY too busy to make me comfortable.

DH and I will be having a special Valentine's dinner tonight after our daughter goes to bed.  Steaks, baked potatoes, steamed veggies.
Title: Re: Living with Food Allergies, FEB 2013
Post by: krasota on February 15, 2013, 11:04:42 AM
I had to stop going out for my birthday long before I had food allergies because it's so close to Valentine's Day and the restaurants were full of roses (asthma/migraine/hives trigger) and perfume (ditto).  It's pretty much the worst time of the year for me to leave the house.
Title: Re: Living with Food Allergies, FEB 2013
Post by: SilverLining on February 15, 2013, 12:46:12 PM
living with food allergies sucks.  But, the alternative is worse.

So.....time to call another company.  New company, labelling looked good.  I don't even remember what it was.  It's on my phone.  Lol.  We were walking through the grocery store, hubby and I both thought this new label looked good, so I wrote the info in my phone to check.  All I remember is it's a US company, so I don't know if I can trust them about sesame seeds.
Title: Re: Living with Food Allergies, FEB 2013
Post by: hezzier on February 15, 2013, 05:32:27 PM
Was in the city today for lunch date with DH, stopped at Whole Foods and found beautifully decorated Fancy Pants Bakery Cookies (very pricey).  DS has never had a cookie like that before, kind of sad the first one is at 8.
Title: Re: Living with Food Allergies, FEB 2013
Post by: ajasfolks2 on February 17, 2013, 06:29:07 AM
Missed a warning,

"Processed in a facility that processes tree nuts"
 
on a bread label.

Was directly underneath the BOLDED "Contains soy and wheat" notice.

But it wasn't bolded and either I didn't see or it didn't register as my eyes keyed on the bolded portion.

I may have read the label without reading glasses (now finally truly needed, TYVM).

I caught the mistake on a re-read/re-check at home a couple weeks later . . .

Thankfully, no reaction.  We got lucky. 

So, multiple lessons learned here:

1.  Mom: Reading glasses for ALL LABEL READING!!!
2.  Kids/hubby: Must be certain they are the back up label readers at home or elsewhere.  Trust NOBODY to do it for you.
3.  Everybody:  Breads (baked goods) are notorious for being high-risk.  Never forget this!
4.  Everybody:  Even the near-15+-year-veterans of living with food allergies can make mistakes.  Epinephrine must always be there to help cover for a mistake or the unforeseen.


Lessons learned.

Again.


Title: Re: Living with Food Allergies, FEB 2013
Post by: GoingNuts on February 17, 2013, 07:20:46 AM
Good reminder, Ajas.

I am soooo tempted to forward your post to DS, but I know it would not be well received.

Title: Re: Living with Food Allergies, FEB 2013
Post by: PurpleCat on February 17, 2013, 09:56:19 AM
Was in the city today for lunch date with DH, stopped at Whole Foods and found beautifully decorated Fancy Pants Bakery Cookies (very pricey).  DS has never had a cookie like that before, kind of sad the first one is at 8.

I bought one of those for DD for Valentine's Day.  Fun.....but......$3.99 for 1 cookie?  Really was too expensive.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on February 17, 2013, 11:02:49 AM
Good reminder, Ajas.

I am soooo tempted to forward your post to DS, but I know it would not be well received.


What she said.   :yes:
Title: Re: Living with Food Allergies, FEB 2013
Post by: ajasfolks2 on February 17, 2013, 07:49:17 PM
Forward away, and as to

Fancy Pants -- well, I make better cookies.

My kids say so too.   ;D

It was helpful to have them eat "commercial" cookie so that they could realize what they were NOT missing.

Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on February 18, 2013, 12:15:01 PM
That is so true.

I get tired of cooking, but my family mostly agrees that restaurant meals are...




meh.   By comparison, I mean.  My pizza is the best in town.  And it only costs about $4 to make one of my pizzas, which is way, way different than the 17-25 that the local places charge.


I make better salads, better pasta, better soups, better bread (mostly), better ice cream, better cupcakes, better cookies.

It makes store-bought and "going out" rather disappointing, I must say.   :thumbsup:
Title: Re: Living with Food Allergies, FEB 2013
Post by: hezzier on February 18, 2013, 02:48:53 PM
No doubt that homemade is way better for you even if it is full of sugar...at least it doesn't contain any fillers/preservatives/etc, but still nice on occasion to pick up something store bought...and much better for my waistline...if I make an entire batch of cookies, who do you think is going to eat most of them? 
Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on February 18, 2013, 05:15:40 PM
I like Fancy Pants cookies, and I'm incredibly grateful they can be bought at a store.  They're expensive, but they are an occasional thing.  Working moms need shortcuts. Period.  And some SAHMs  do, too, I bet!  I would have loved to make VDay cookies, but there was no time. 

So spend a little money to buy something that I think it pretty good* or have my kid not experience that little surprise in his lunch one day?  I'll take the former, tyvm.

I also think Dare Maple Creams are to die for.  And I am so glad they exist.  When you have as many events to take food to as I do, you need some shortcuts like these (every.single.time.we.are.at.church.there.is.communal.food--but we don't eat every time and we don't take cookies every time, but sometimes, it's really important to have them there).

So y'all can trash talk FancyPants, but I cried the first time I saw them in the store, and I thanked the manager. I certainly bought one for DS. And Hezz--he was 14.  So cool.   And I have thanked the company. And I am really glad that there is a safe alternative that non-FA parents can take to the class food fests.  :yes:

I do think that as a community we need to be supportive of products made for our community--especially when they are filling a real gap--if not with our pocketbooks, then with our sentiments.


*Okay--the way I enjoy a FP cookie is to eat a salted Blue Diamond almond, swallow, then take a small bite of cookie, then eat another almond. Rinse with Darjeeling tea and repeat. I bought the box of 8 cookies, btw.
Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on February 18, 2013, 05:18:29 PM
On a similar note, I'm sure I could no doubt make chocolates that are superious to the VNF chocolates in the heart box (well, DH could, lol), but I am so glad I can order them for DS. He loves them.  And I absolutely wouldn't have time to make them. Again, I thanked the company for making my son's VDay nicer. Poor kiddo was at school from 7am-4:30pm that day, walked across the street to eat dinner and do homework at a coffee shop, then walked back to school at 6:30 and was there until 9:30. Glad something made his day brighter.
Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on February 18, 2013, 05:26:47 PM
I came to say this: I didn't take communion at the installation service of a minster friend of mine who just moved to the area.  It wasn't sad for me.  It has been in the past, but it wasn't this time. I was just so happy for her. It was served by intinction. If I had been the first in line, I might have taken from the center of the loaf (it didn't have sesame on the top), but I wasn't.  And a guy in front of me ripped off a huge chunk of the crust and dipped that in the juice, and that was it for me. But the way the sanctuary was arranged, I did have to get up--no walking around me.  I just went up and crossed my arms like I do when I go to a Catholic church. Laity were serving, so I bet they didn't get it.  So I mentioned a food allergy.  Clergy will get that sign.  Oh well.

Oh--and I've sent two long emails to school today.  That ate up far more than my lunch break.  I'll make up that time tonight.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on February 18, 2013, 08:41:01 PM
There are some slices of normal that you just never take for granted...



DD13 spent the day wandering around town "shopping" with a group of her friends.  Without an adult. 

There were some times when I wondered if this was ever going to be a part of DD's life.  I'm so grateful that she can (and does) do things like this. 

Title: Re: Living with Food Allergies, FEB 2013
Post by: GoingNuts on February 19, 2013, 02:39:25 PM
I heard an interview this Fternoon with a mom who put her obese 7 year old on a diet (you can listen on NPR.org /tellmemore).  A one point the mom talked about how she became that "crazy mom" and the interviewer asked whether people couldn't just compare it to a peanut or egg allergy, how they would certainly understand how that was life threatening.  Why couldn't they understand that she was fighting for her DD's life too?

Oh, if only that show took phone calls, LOL.  ;D
Title: Re: Living with Food Allergies, FEB 2013
Post by: hezzier on February 19, 2013, 05:03:12 PM
Mac...I would have loved to supply DS's class with Fancy Pants Valentine's cookies, but just too expensive.  I couldn't justify $100 for a snack.
Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on February 19, 2013, 09:41:59 PM
Oh, no doubt.  I have just thought that for non-FA moms who might pick a box of them up with the other boxes of bakery cookies--as a safe option.
Title: Re: Living with Food Allergies, FEB 2013
Post by: becca on February 20, 2013, 07:24:31 AM
McC, I totally get that.  I am a SAH mom and sometimes i do not have time to bake, don't feel like it, or don't want to make the mess, etc...  or have to make too much other food, for a party, etc...  Dd feels like the store bought cupcakes and brownie bars from out local grocery are a treat.  So, I will occasionally get them rather than bake for her.  I do that for dh's birthday, sometimes.  he loves cheesecake, and I can make a safe one, but she hates it.  It is his birthday, however and I like to make his favorite cake.  So, I get her a package of something festive rather than bake for her too.

Great to have those choices!  And with a niche market, those bakeries are not getting rich, even with high prices.  I bet they just get by, making a living.  It is often a flash in the pan sort of career that varies with trends. 
Title: Re: Living with Food Allergies, FEB 2013
Post by: starlight on February 20, 2013, 02:28:40 PM
Great to have those choices!  And with a niche market, those bakeries are not getting rich, even with high prices.  I bet they just get by, making a living.  It is often a flash in the pan sort of career that varies with trends.

The thing with FancyPants, is that they could branch out of the niche market if they lowered their prices. I bought one of those $4 cookies at Whole Foods. Not amazing, but decent. Anyway, there were hoardes of cheaper, just as cute cookies available right next to them. The only people who would go for the FancyPants are the people with nut allergies and people with children with grabby hands. $7 for 8 small chocolate chip cookies is just too much to attract the sort of buyers they need to attract to be able to stay in stores. I'd be willing to pay up to $5-6, but $7? You can get two cartons of ice cream for that. Or 7 safe Dove chocolate bars. Or 3 boxes of Betty Crocker and the eggs and butter to make your own 50 chocolate chip cookies.

I understand the need for high prices if you truly have a niche market, aka online or your own store, or you need to buy special pricey flours to make things gluten free. But just for "natural" (natural does not = organic) and nut free ingredients? Yes, I'm happy to have this choice, and I did make this choice once, but it's one I'm very rarely going to make when I have so many other options, ykwim?
Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on February 20, 2013, 04:48:08 PM
That's a really good point. Their price point is not sustainable for long I fear.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on February 20, 2013, 05:28:19 PM
... which is really sad.

This is why I feel it is SO important to THANK companies that aren't necessarily marketing to a niche-- but whose policies make them reliable and readily available choices in the existing marketplace.

Gimball's.  PhillySwirl.  Etc.   :yes:
Title: Re: Living with Food Allergies, FEB 2013
Post by: YouKnowWho on February 20, 2013, 05:53:04 PM
But it helps to sell in Whole Paycheck to convince those to part with that kind of money. 

Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on February 24, 2013, 11:55:34 AM
For anyone who wonders whether or not it's important to know if there are treenuts that your child is allergic to.... versus NOT (or at least 'not-that') allergic to...


DD's school Europe tour bus must be free of those anaphylaxis triggers that she is demonstrably aerosol/contact sensitive to (at least in a big way, KWIM?  Hives are one thing, but anaphylaxis rolling down the M40 somewhere south of Birmingham isn't ideal, to say the least.

The problem is that on a packed school tour, the kids HAVE to pack snacks.  They have to-- it's as much as 5-7 hours between meals, and there is a LOT of physical activity in that time.    Those snacks must be: a) lightweight, b) high energy, and c) shelf-stable.

Granola bars, energy bars, and nuts/seeds, right? 

Well, in that family of things it is REALLY important to avoid only those things which pose actual contact/inhalation risk to a person who is allergic.

For my DD, those things are cashews and peanuts.  Like, those things REALLY cannot be consumed within 5-10 feet of her, no matter how careful the handwashing or whatever is afterwards.

What this means, though, is that almond-based snacks are okay.   That's important for other people to know.

Title: Re: Living with Food Allergies, FEB 2013
Post by: ajasfolks2 on February 24, 2013, 03:49:35 PM
Beyond thrilled!

Sign at entry to military commissary today:


(http://i24.photobucket.com/albums/c24/tahoequeen/IMG_0267_BlueBell.jpg)


Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on February 25, 2013, 09:51:33 PM
You know I'm sooooo jealous, right? 
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on February 26, 2013, 12:08:03 PM
Kind of freaking out.

Okay-- not "kind of."

I am quietly freaking out.  Close to hysteria, in fact.

I feel distinctly like the proverbial headless chicken, which when you think about it is a completely grisly image that ought to scare the crapola out of anyone....  and really, thinking about chickens at a time like this??  I need to be figuring out cell phone usage in Europe... I need to be reserving a hotel in London... I need to be adding things to my packing list... I need to be printing forms... I need to be dropping those forms off for the allergist...

I'm sort of paralyzed by the weight off the sum of all of those seemingly small details-- because forgetting ANY of them is going to be catastrophic-- or cost more time later, at the very least.  Even my LISTS have lists... and everytime I walk away from the computer (or pen and paper) to actually DO anything, I remember more things that belong on lists, and then I forget them as soon as I could write them down...  I'm doomed.

What. was. I. thinking??    :hiding:


Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on February 26, 2013, 01:17:23 PM
:heart:


Keep your eyes on the prize.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on February 26, 2013, 01:39:56 PM
Yay!  London hotel!  Near the train station!  Near the V&A museum!  Near the Tower!  Near Hyde Park!

Spoiler (click to show/hide)


phones...phones... phones... I keep reminding myself that cell phones have made my life EASIER.  Really they have.  Must remind self of this again.    <muttering>
Title: Re: Living with Food Allergies, FEB 2013
Post by: LinksEtc on February 26, 2013, 01:43:20 PM
CM,

I hope you & your dd have a great trip.   :grouphug: for all the stress.  Hardly anything is risk free, but you are on top of this allergy stuff.  Lists are good ... you're a great planner ... I'm excited for you and will be hoping that all goes smoothly.   :smooch:
Title: Re: Living with Food Allergies, FEB 2013
Post by: PurpleCat on February 26, 2013, 04:48:24 PM
OH!  Have a wonderful time!  I'm jealous!
Title: Re: Living with Food Allergies, FEB 2013
Post by: ajasfolks2 on February 26, 2013, 05:31:36 PM
With accepted offer on house and contingency nearly met

am realizing what a HUGE clean up we will have on inside of this home
as owners are nut lovers . . . oh the door and cupboard and handle and switch
cleaning!!

Perhaps cellphones could be programmed to do THAT?!
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on February 26, 2013, 06:08:08 PM
Oy-- this is the real reason that I dread ever moving again, Ajas. 

SO glad that you found a new house, though-- YAY! 
Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on February 26, 2013, 06:38:11 PM
Ajas!! Congratulations!! I was pondering that just now when looking at some houses online.


CM--you mean, you can check out any time you want but you can never leave?  I think I might take that in that city!
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on February 26, 2013, 06:40:59 PM
I think maybe we're all secretly hoping, actually.

It's a five minute walk from St. James Square.  <swoon>

Title: Re: Living with Food Allergies, FEB 2013
Post by: ajasfolks2 on February 27, 2013, 04:08:19 AM
CM, am so jealous of upcoming travels . . .

Funny trade off I was thinking about -- 20+ years ago I was travelling the world with ballet co & suitcase full of FILM since it was expensive & not always available where we went.  (Not to mention suitcase full of pointe shoes!!)  Now I would travel with suitcase full of allergy-safe foods.

There's always something new, isn't there?  LOL!

 :smooch:

Title: Re: Living with Food Allergies, FEB 2013
Post by: Janelle205 on February 27, 2013, 09:59:37 AM
I know it isn't going to change, but it is ridiculously irritating to spend $5 for a tiny container of soy-free margarine when there are 'regular' ones right next to it for .99.
Title: Re: Living with Food Allergies, FEB 2013
Post by: Gray on March 01, 2013, 04:37:05 PM
Being on a small maintenance dose of an allergen comes with unique challenges.  The other day, dd opened a box of crackers with her allergen and was about to just start eating  :o .  She's had them before, so why not?  Hard to explain to a young child, but I think she understands now.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on March 01, 2013, 06:01:11 PM
It's really hard to do re-restrictions that way.  We still sometimes get into trouble this way with milk protein.

Even after seven years, it's still not normal tolerance-- and I have to remind her. 
Title: Re: Living with Food Allergies, FEB 2013
Post by: booandbrimom on March 01, 2013, 06:15:05 PM
Did the post-FAHF2 checkup with our own doc.

1) Got an Auvi-Q prescription. So cute! So small!

2) Scratch tested for milk (same), peanut (MUCH bigger than during the trial), soy (negative), green pea (negative), hazelnut (negative). I should be happier. The milk one really bummed me out though. Will check RAST and perhaps try soy and pea in the office. He failed a pea challenge already with a 0 RAST and no skin reactivity...she says it happens 2% of the time.

3) She thinks his hazelnut positive was pollen related. Wants to see the RAST, but really thinks he's not allergic. Excellent if we could cross that one off.

I don't know why this stuff is always so depressing.
Title: Re: Living with Food Allergies, FEB 2013
Post by: Janelle205 on March 03, 2013, 12:24:30 AM
I hate it when manufacturers change ingredients.  Jerks.
Title: Re: Living with Food Allergies, FEB 2013
Post by: TabiCat on March 03, 2013, 02:50:36 PM
We had First Sunday pot-luck at our church today. We are heading in the back door near the kitchen so we can drop off our dish and DS lunch bag. Several men have set up large gas fry pits for frying fish so DH stops to ask one about their oil. He checks the container and tells dh its vegetable oil. Dh thanks him and says we just wanted to make sure its not peanut oil. One of the elders that we don't know personally (very large congregation)  comes around a cornor just in time to hear "peanut oil". HE turns to DH " oh no we can't use peanut oil it's too dangerous there's a child with an allergy in the church"

DS looks at him and says thank you I am allergic to peanuts.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on March 03, 2013, 03:21:31 PM
 :heart:   That must have made your DS feel awesome Tabi!  What a lovely gentleman to have shared this as a concern-- and not as a burden. 
Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on March 09, 2013, 11:23:42 AM
 Not judging a speech tourney today but volunteering in another capacity so ray I am touching the critique forms the kids will get back. Just had almonds with my lunch and made sure I washed my hands well.   Last week's judges lounge had peanuts. Ugh. I think of all those critique sheets they touched.  Yuck.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on March 09, 2013, 02:12:48 PM
FOUND OUR RAMEN!  (Which, in a recap, we are pretty much going to be dependent upon for basic nutrition for 3-10 days while in Europe-- DD and I both, potentially)

But not before "adventures in low-caffeine struck at Store number 1."   ~)  (Typical.)

The Story of "Not all That LOOKS safe... is the same as that which actually IS"


Store number one-- called this morning.  "I need a particular brand of Ramen noodles.  Yes, <laughs> I know-- but this is because of food allergies.  Everyone else in town except (ratty store) seems to carry Nissin/Top-Ramen and not Maruchan.  Any chance that you carry the Maruchan brand?"

"Yes-- we carry both brands." 

"Great!"  (Since this is also "budget-priced" grocery store and it's next to PetCo where I need to go to get more of our only-sold-in-one-store-in-the-entire-universe cat food.)

In store, I notice the rows-and-rows of shelf space devoted to Maruchan cup-o-noodle (you know, in the foam cups?)  And then I spot it-- HURRAY!  That magical BLUE label... loose packets, not ideal.. I prefer the case/sixpacks which are tidier, but at this point I could CARE LESS, because they HAVE IT...

 Hey-- 0.10 each, no less.  AWESOME.  I grab $3 worth.  Yes, this is a lot of ramen.


Get out to the car, drop that off, walk over to get cat food.  Back to car, drop THAT off, and something about the ramen catches my eye...

Hmm.  WHAT?!!!!   AUghhhhhhhh!!!!!  It's all NISSIN.  WTF??  HOW could I not have even noticed this??  HOW??  HOW??

Back into store.  Yup.  That's right.  All of the cup-of-noodle stuff is Maruchan... and all of the plain ramen is Nissin.  :banghead:

So I go to the OTHER (more expensive) store after I go back to pick DD up at the end of her workshop...

At first, all I saw THERE was the Nissin stuff, too.  I was just about to throw a giant hairy cat fit when DD gently pointed out to me the smaller wire bins of the Maruchan next to it.  Well. 

It cost twice as much.  But at that point, it could have cost $1 each and I seriously wouldn't have cared.    Now, why didn't I go to this store to begin with, you ask?  Well, because the CSR there didn't seem to "with it" when I called around this morning, quite frankly.



The good news is that I can probably count this four hour adventure as community service.  LOL.  Yeah-- sure.


 Because I was "buying food to donate to the food bank."    :rofl:
Title: Re: Living with Food Allergies, FEB 2013
Post by: ajasfolks2 on March 12, 2013, 12:10:53 PM
Refrigerator repairman here this morning.

Asked him to don shoe covers/booties.

Then asked him to wash hands, esp since he was repairing a food storage device for 2 LTFA kids.

He was AWESOME about it.  And mentioned he had eaten PBJ this morning.

Some people are getting it.  They really, really are.   :yes:

Title: Re: Living with Food Allergies, FEB 2013
Post by: GingerPye on March 12, 2013, 12:30:03 PM
 :thumbsup:
Title: Re: Living with Food Allergies, FEB 2013
Post by: Gray on March 26, 2013, 02:47:34 PM
*** poof ***
Title: Re: Living with Food Allergies, FEB 2013
Post by: twinturbo on March 26, 2013, 03:02:53 PM
I have to say our school moms are mostly awesome. Even though I've never asked they always go out of their way to make sure their own child's bday party is nut free for DS. We always bring our own food and never ask for that accomodation but they make it about the kids first. We've been to some really fun parties this year.
Title: Re: Living with Food Allergies, FEB 2013
Post by: ajasfolks2 on March 26, 2013, 06:11:21 PM
@ Gray,

You know, if I could have just ONE wish right now WRT food allergies, it would be standardization as to diagnosis . . .

which tests, by whom, how often, and what-the-heck-ever the numbers/results correlate to???????

MORE MONEY into testing and analysis and studies is likely the only way we'll get there.

It's been 13+ years since my son was officially diagnosed and had first ana reax.

Geez.  You'd think we'd be closer to SOME CONSENSUS by now.


(Vent over.)


Title: Re: Living with Food Allergies, FEB 2013
Post by: Gray on March 26, 2013, 07:06:03 PM
I hear you Ajas!

That's great, TT.

Title: Re: Living with Food Allergies, FEB 2013
Post by: Janelle205 on March 26, 2013, 07:56:26 PM
Additionally, I think that there really needs to be a way for patients to relate important intolerances that are not necessarily allergies on a medical form - I explain to them that I'm intolerant of some things, but that it isn't a true allergy, but the medical staff pretty much always just puts it in as an allergy.

To make that somewhat vague sentence more clear, I'm intolerant of a few antibiotics, to the point that I will not take them.  (I understand that some level of GI distress is expected with the abx - the level I had was definitely not just some.)  But it's not an allergy - yet that is the only way to really indicate that on most medical forms.
Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on March 26, 2013, 09:47:49 PM
Oh, I just say allergy and call it a day. I am/have been allergic to penicillin (would love to have a challenge), but quinolones make me wish I were dead. I DO NOT want them. I've never been tested. I don't have hives, etc., but wow, does that stuff make me feel awful and I don't want it.
Title: Re: Living with Food Allergies, FEB 2013
Post by: Janelle205 on March 27, 2013, 05:30:35 PM
See, that's what I usually do, but then the doctor asks about my symptoms and says "Well, that's not a real allergy."  Yes, I know this, but there isn't any other place to write this, and I'm still not going to take it, which is really what is relevant here.
Title: Re: Living with Food Allergies, FEB 2013
Post by: SilverLining on March 27, 2013, 08:19:29 PM
For years, when my youngest needed any antibiotic I would say NO PENICILLIN.  I did not say he was allergic, I just said he is not getting it.  Then, when he got allergy testing done, the allergist actually said he was amazed ds had never had an anaphylactic reaction to penicillin.  Now, I have the allergists advice to actually say he is allergic.
Title: Re: Living with Food Allergies, FEB 2013
Post by: Janelle205 on March 27, 2013, 09:46:55 PM
My regular doc is used to it, but I've had a stat care doctor totally throw a fit that I need to avoid two antibiotic families.  Zithromax (the z pack) ends with me living in the bathroom, to a point that isn't acceptable.  I was in college and actually had to stop going to class.  Doxyclycline might actually be a real allergy - I throw up, like clockwork, every single time I take it.
Title: Re: Living with Food Allergies, FEB 2013
Post by: notashrimpwimp on March 28, 2013, 01:40:56 AM
Living with food allergies means starting the evening by reading a menu and planning in advance precisely what to order...only to leave midway through the meal because of an allergic reaction. Pinpointing the cause, because the food read safe, proves difficult.  :disappointed:

Living with food allergies means trusting your body when others disagree and attribute your reaction to anxiety. How can you fear something you aren't even aware of? Sometimes it means facing a reaction's progression while trying to decide if it really is a reaction...when it usually is. :(

Living with food allergies means making alternate suggestions for hanging out with friends while hoping they understand why you declined an invitation because every time you make an exception something happens. :/
Title: Re: Living with Food Allergies, FEB 2013
Post by: booandbrimom on March 29, 2013, 03:57:03 PM
So soy is 0.8. Challenge in a week.

 :hiding:

Geez, if he can eat soy...and baked milk...and tolerate trace amounts of peanut...he could actually start eating in restaurants.
Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on March 29, 2013, 04:48:46 PM
Wow. That's great. And such a nice possibility at his age.
Title: Re: Living with Food Allergies, FEB 2013
Post by: SilverLining on April 01, 2013, 02:36:05 PM
Living with food allergies.....means.....crossing another company off my safe list.

I bought a Selection product.  It does not list "may contain" so I called.  The CSR could not say the name of the product properly because she doesn't speak English well enough. (That matters when I can die if the person doesn't understand me.). Anyway, she says they do not put "may contain" on the label but she can check for me.  I give her the code number and she says she has to put me on hold while she speaks to her specialist.  Then she comes back and says her specialist is in a meeting and she will have to call me back.

 :insane:  :insane:  :insane:

get with the program people.  We are living in the computer age.
Title: Re: Living with Food Allergies, FEB 2013
Post by: SilverLining on April 01, 2013, 02:36:35 PM

Got the call back.

It's may contain tree nuts.
Title: Re: Living with Food Allergies, FEB 2013
Post by: GoingNuts on April 01, 2013, 06:35:51 PM

Got the call back.

It's may contain tree nuts.
:disappointed:
Title: Re: Living with Food Allergies, FEB 2013
Post by: ajasfolks2 on April 01, 2013, 06:40:21 PM
If ANYONE believes that food allergiy is a "one size fits all" -- all he/she needs to do is READ THIS THREAD.

Such widely varying experiences . . . as we all go through life . . .

and (thankfully!) still living with food allergies!

Title: Re: Living with Food Allergies, FEB 2013
Post by: TabiCat on April 01, 2013, 09:26:24 PM
This is a little thing but thrilled me. I went out too lunch with some buds from work and found another restruant where I can eat the SALSA  :happydance:
Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on April 01, 2013, 09:42:30 PM
Woot!  Tabi I thought you were NKA.
Title: Re: Living with Food Allergies, FEB 2013
Post by: SilverLining on April 01, 2013, 10:19:08 PM
I am happy for you TC.   :)

I brought the Graham Crumbs back and got my money.  Then went to Walmart and bought the brand name.  DS was going to help me with the baking today, but of course there was not time after all that.

Aw well!  it Wednesday I need those fishless fish sticks for isn't it MC?  ;)
Title: Re: Living with Food Allergies, FEB 2013
Post by: TabiCat on April 02, 2013, 03:39:08 PM
Woot!  Tabi I thought you were NKA.

Nope but just jalapeno and apparent banana peppers. I once ate and LOVED jalapenos but in college I started  having problems with them "hurting my throat" until one day my face swelled and I become hoarse and then short of breath. Ended up at ER they said  was allergic and gave me my first and only does of epi and I have carried an epi and avoided ever since. I really didn't pay much attention to food allergies in general until DS was a baby since mine is pretty easy to avoid. When DS was diagnosed his allergist insisted I get properly test which my gp never did just kept renewing my EPI.

Eating out for Tex-Mex is hard  I can almost NEVER it salsa out. 
Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on April 02, 2013, 08:17:45 PM
Oh, I think I remember that now.  Yeah, kinda hard to avoid in Texas, huh?
Title: Re: Living with Food Allergies, FEB 2013
Post by: SilverLining on April 03, 2013, 09:36:19 AM
today some little allergy-related things are making me happy.

first, there is a Canadian company you can get free samples from.  Last time I passed on a few because they might have contained my allergens.  Not a big deal, but I did send an e-mail that I was surprised there was no questions about allergies.  They responded, I don't remember exactly what, but something about looking into it.  So, today got another e-mail to select free samples.  This time there was a question specifically about skin allergies/sensitivities and another specifically asking about gluten free diet.  Maybe this has nothing to do with my e-mail....but I feel good anyway....maybe I contributed to them looking into ingredients.

Second, I was looking as the followers of CAIAnaphylaxis on twitter.  One of their followers is WestJet.  An airline.  (They were more allergy safe then the law required many years ago.  I'm not sure exactly where they are right now.)
Title: Re: Living with Food Allergies, FEB 2013
Post by: ajasfolks2 on April 03, 2013, 05:27:12 PM
Had 2 moving co representatives to our home to do pre-move surveys and bids. Both men were very receptive to our food allergy needs (packers/movers must wash up when they arrive AND we’ll supply all their food — of course, we’ll work with their allergies and other dietary needs to keep ALL safe and healthy). Nobody looked at me like I had 3 horns and 4 noses . . . and one shared that his own young child also was nut allergic . . . and BOY could we share some stories. So much has changed so far as education and understanding in the general population since our family first began to deal with LTFA (life-threatening food allergy) 14+ years ago. So, two thumbs up for those guys!!
Title: Re: Living with Food Allergies, FEB 2013
Post by: hezzier on April 04, 2013, 08:20:34 AM
Ajas-very nice!  I don't know what non-military do when they move, but we always provide lunch and drinks for the packers and movers.
Title: Re: Living with Food Allergies, FEB 2013
Post by: buttons on April 04, 2013, 09:24:21 AM
My sister sent my (nka) daughter what would have been a lovely birthday gift of special cookie baking ingredients, but all have may contain warnings, and I had to return them with a request she receive a refund.  Will have to call my sister and explain - makes me feel paranoid and ungrateful, angry.  She's done this before.  I get to pay for postage, plus have that pleasant phone call. 

I don't know what the issue is, just stinks is all.
Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on April 04, 2013, 09:37:41 AM
Our SOP is just to toss the gift and write a thank you note (and once my son was writing his own thank you notes, he wrote those, too). But that's with regular folks. You would hope closest family members would get it.
Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on April 04, 2013, 09:39:20 AM
Ajas that's just lovely. We've had similar concerns in the past year, and what a relief to know that's one thing you don't have to worry about. :yes:
Title: Re: Living with Food Allergies, FEB 2013
Post by: ajasfolks2 on April 04, 2013, 09:14:16 PM
So, in our offer to feed the crew for lunch (and supper, if needed, plus snacks/bev) -- I made sure that they understand we will accommodate all their crew dietary/health needs as well . . . I was the one who called for extra breaks last time due to excessive heat . . . lots of Gatorade and popsicles!!

Title: Re: Living with Food Allergies, FEB 2013
Post by: Gray on April 07, 2013, 10:19:32 AM
Friday night we were travelling and at a friend's house for dinner.  Dd got a red, itchy patch on her face, plus itched slightly on her tummy, leg, & foot.  I gave benedryl and watched and symptoms went away and did not return.  They weren't really hives, but this is discouraging because this was not just a local reaction.  Also, I suspect that it was to a different food, not the allergen we've been dealing with, although there's no way to know for sure because the meal could have had traces of her allergen.

Will have to discuss with the allergist how I should have handled this.  For many hives, our plan calls for epi.  There were so many foods and spices at that dinner (shrimp, fish, cumin, pepper, etc) - I'll have to keep an eye on those foods.

Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on April 07, 2013, 02:47:46 PM
Possible XC with the spices and sesame?

Sorry--it's not a happy thought either way.
Title: Re: Living with Food Allergies, FEB 2013
Post by: Gray on April 08, 2013, 12:28:30 PM
I really doubt the rxn was from XC because she tolerates a significant maintenance dose of the allergen, but reactions can be unpredictable which is one of the risks of our current approach.  My gut says it was from a different food/spice.

Before the challenge, I was pretty conservative with XC risk and she never had an ingestion rxn (other than her initial rxn) that I knew of. Things are different now and I find myself still trying to find the right risk balance.  I have a lot of confidence in our new allergist, so I'm going to listen to her advice, although I hope we don't have to go back to total avoidance.
Title: Re: Living with Food Allergies, FEB 2013
Post by: krasota on April 20, 2013, 02:52:09 PM
Had to explain to my birthday child today that, yeah, the Wilton Scooby Doo cake pan is really cool, but egg-free, gluten-free cakes don't mold well.

Afterward, DH said he probably could've freehanded Scooby on a round or sheet cake.  So I suppose I should've bought the icing dye.  I still have time to go back to the cake shop to pick it up today and get it done before tomorrow's party.  But then again, I also have to make cupcakes, bake a cake, and make party food.  And pump.  *sigh*

I hope next year is easier.  He had a slightly sub-par birthday last year because his sister was still in the NICU.  And this year I'm trying to take care of two kids and the wire baby (breastpump).
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on April 20, 2013, 04:43:51 PM
Y'know what DOES mold well, though?

Rice-Krispie treats.  (Or equivalent for your allergen set, whatever it is.)


I seriously never thought of this as a way to make figural cakes until we did it with a free-standing RABBIT a couple of years ago.  I feel like a really super-slacker mom for denying my princess a 'cute' cake as a child.  Oh well.  There was the caterpillar.
Title: Re: Living with Food Allergies, FEB 2013
Post by: YouKnowWho on April 24, 2013, 07:25:52 AM
DS1 has never had a cute cake.  Ice cream sundaes, popsicles, Enjoy Life cookies with dollops of icing.

He knows my limitations and never complains.  It makes me love him all the more.

(Which I really needed to remember today since DH told me my meatloaf tasted like poo due to his "diet" restrictions).
Title: Re: Living with Food Allergies, FEB 2013
Post by: SilverLining on April 24, 2013, 07:55:30 AM
Today.  I feel like there's a giant target on my back....and instead of darts, I'm getting hit with guilt.

Ya!  This is fun for me too. 
Title: Re: Living with Food Allergies, FEB 2013
Post by: ajasfolks2 on May 06, 2013, 05:00:32 PM
Need to remind myself to go back to Whole Foods and buy some Ataulfo mangoes and prepare and freeze them so son could use for possible food challenge this summer.

So much yummier than the other mangoes . . . but am also wondering if I should get some of both varieties so he can food challenge both?

Hmmmm . . . might not be bad idea.

Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on May 08, 2013, 10:31:04 AM
While cleaning my kitchen this morning, I suddenly realized that with food allergies in our lives, we have the following situation--

"safe breakfast" always means that somebody isn't sleeping in.

Hot fresh bread?  Means that someone has been up FOR HOURS. 

Meh.

On the other hand, I'm also pretty convinced that most people don't actually understand what I mean by 'hot, fresh bread.'  So maybe that's okay.
Title: Re: Living with Food Allergies, FEB 2013
Post by: twinturbo on May 08, 2013, 03:19:51 PM
One of my friends sent me a wonderful Mother's Day gift. A really beautiful, too-expensive-she-shouldn't-have box of nuts delivered to my house. Good thing I had DH open it outside.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on May 08, 2013, 07:12:57 PM
I refused to purchase my avid bookworm of a DD a book today.  A promising-looking book about social/cultural constructivism, actually-- which I initially was perfectly happy to get her.

Why?


It was THIS book.

Those who have been around a while will no doubt recognize this author's name and claim to 'fame' (well, okay, infamy is more like it).


I explained why with a message with the subject line:  Why no book by Christakis will ever darken my door

and explained that some things never die.  Hatred borne of righteous anger.  Evil.  That sort of thing.  This is both, obviously.

Gosh, that still makes my blood boil and it's been YEARS. 

I also went on (probably in a fit of pettiness, it's true) to explain why people who aren't actually smart enough to get MD's and PhD's...( er.... and truth be told, most people in med schools and grad programs would argue that this particular linkage is incorrect, as that should be "or" LOL) are the only ones that think that an MD/PhD program is "better" than one or the other.  Nobody else is much fooled by them, and they make both lousy researchers AND lousy clinicians, because the programs are effectively watered down versions of both things, and not really good for much but producing mediocrity to begin with.   :evil:

Title: Re: Living with Food Allergies, FEB 2013
Post by: Janelle205 on May 08, 2013, 08:12:32 PM
I'm sick.  I want soup.  And I don't want to have to make it.

Prepared soup does not exist for the soy-allergic, for the most part.  And it definitely does not exist and the grocery store that is close to my house.  And it kind of defeats the purpose if I have to make a special trip to a different store.





It probably doesn't help that what I really want is Campbell's chicken and stars, the sick food of my childhood (and I was sick a lot).  Never going to happen.
Title: Re: Living with Food Allergies, FEB 2013
Post by: YouKnowWho on May 08, 2013, 08:57:33 PM
Hugs Janelle  :grouphug:  I so understand that problem, I truly do.

I wish I knew a way to mail safe soup to you :(
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on May 10, 2013, 04:46:34 PM
Stuff like 37 tons crab meat dumped on Utah freeway
used to just strike me as funny and peculiar.

Now, not-so-much.

More like:

Spoiler (click to show/hide)
Title: Re: Living with Food Allergies, FEB 2013
Post by: twinturbo on May 10, 2013, 05:03:33 PM
I treat milk trucks on the highway with the same respect (and stopping distance) as I do fuel trucks. Someone spilled beer at Target and we had to decide real quick whether that much hops and barley in the air or on the floor was going to be a problem.
Title: Re: Living with Food Allergies, FEB 2013
Post by: YouKnowWho on May 14, 2013, 01:19:03 PM
Three ice cream parties, cupcakes out the wazoo, more candy.

Why do I send my kids to school?  And yeah, that is just next week to celebrate the last days of school  :insane:
Title: Re: Living with Food Allergies, FEB 2013
Post by: hezzier on May 14, 2013, 06:36:11 PM
I think we might have you beat YKW.  Notice came home saying there were 5 May birthdays and 6 summer birthdays to be celebrated before the end of school.  The notice came out with 22 days left which mean if everyone signed up (I told the teacher we were not participating), there would be a treat every other day.  This does not include the popsicle they were given for doing a good job in the 2nd grade musical.  It also doesn't involve the popsicle to be given out for field day as well as one for the 2nd grade round up day (which is essentially a repeat of field day for only 2nd graders).  Unbelievable...here's a math problem for you...How much junk food can the school cram into my child before the end of school?


I can't wait for it to be over
Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on May 15, 2013, 12:25:20 AM
I was thinking of you Hezz.  That is just so unbelievable. So unbelievable.
Title: Re: Living with Food Allergies, FEB 2013
Post by: GoingNuts on May 15, 2013, 09:09:51 PM
For the past several months I've been grocery shopping like other people do; trying something new if it looks interesting, putting things in my cart as if on autopilot.

DS returns from college tonight, and this week's shopping was back to label checking, not buying the kind of bread I like, and being angry about how much stuff is made on shared equipment.  :tongue:
Title: Re: Living with Food Allergies, FEB 2013
Post by: SilverLining on May 17, 2013, 01:18:50 PM
humour is different when you have allergies.

I was flipping through news stations.  HLN was showing a short clip "The Human Factor" it was about the twins Evan and Erik that invented the Auvi-Q.

Why did it make me laugh?  because it was brought to you by Honey Nut Cheerios.    :dunno:
Title: Re: Living with Food Allergies, FEB 2013
Post by: krasota on May 17, 2013, 09:49:11 PM
Why did it make me laugh?  because it was brought to you by Honey Nut Cheerios.    :dunno:

I'd've laughed, too.

I laughed upon reading the ingredients of the purportedly Sensitive Skin hypoallergenic formulation of Neutrogena's sunblock  . . . and not because it had a half dozen ingredients that give me eczema or hives.  No, I laughed because two of the top three inactive ingredients were arachidyl alcohol and arachidyl glucoside.
Title: Re: Living with Food Allergies, FEB 2013
Post by: SilverLining on May 17, 2013, 09:56:53 PM
Lol.
Title: Re: Living with Food Allergies, FEB 2013
Post by: Mfamom on May 17, 2013, 10:14:49 PM
Why did it make me laugh?  because it was brought to you by Honey Nut Cheerios.    :dunno:

I'd've laughed, too.

I laughed upon reading the ingredients of the purportedly Sensitive Skin hypoallergenic formulation of Neutrogena's sunblock  . . . and not because it had a half dozen ingredients that give me eczema or hives.  No, I laughed because two of the top three inactive ingredients were arachidyl alcohol and arachidyl glucoside.

yes!  just had that headbanging conversation at whole body tonight.  my regular guy wasn't there.  the woman who was working was pushy, zero listening skills.  I said i needed something with no nut or tree nut ingredients, along with a handful of fruits.  she first said putting on skin no problem.  i regroup with her and say it is a problem. 
then, everything she gave me was "hypoallergenic" um except for the almond oil, the shea butter, the macadamia nut oils the, black walnut hulls.  OMG.  I finally told her I'd fend for myself.
Title: Re: Living with Food Allergies, FEB 2013
Post by: spacecanada on May 22, 2013, 01:13:38 PM
Please do not tell me your child has severe food allergies and does not require an epinephrine autoinjector and expect me to take them to camp.  I'm trying to educate, but I'm also freaking out because ultimately this child will be my responsibility for a weekend. 
Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on May 23, 2013, 05:26:05 PM
My son today (after I made a safe version, rolled in crushed pretzels):  What's a cheeseball?
Title: Re: Living with Food Allergies, FEB 2013
Post by: twinturbo on May 23, 2013, 08:34:52 PM
After youngest's latest yet again reaction out of seemingly nowhere, possibly heat from exercise or jumping around, wondering if it's time to start the conversation with doc about Xolaire. Have we reached that point? Are we heading there?
Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on May 23, 2013, 10:00:08 PM
Talk to RC about Xolair. 

I took it for a while. Man, you can feel that stuff go into your arm.
Title: Re: Living with Food Allergies, FEB 2013
Post by: Janelle205 on May 24, 2013, 02:07:30 PM
Today I discovered that my local grocery store does in fact carry my favorite variety of safe sandwich buns.  I had been driving all the way across town (like 45 minutes round trip, at least) to buy them.


Why have I not found them yet?  Because they aren't in the bread aisle, where there are other sandwich buns by the same manufacturer, and where, you know, it would make sense to put them.  Instead, they are on a small, low shelf in front of the deli case.  Where I never go, because I can't buy deli sliced products.  Saw them by total chance.  Arg.

But at least I know where to get them now. 
Title: Re: Living with Food Allergies, FEB 2013
Post by: GoingNuts on May 24, 2013, 05:45:14 PM
Janelle, which buns are these?  And which allergens are they free of?  With the disappearance of Wonder, we're having a bit of a bun crisis.  I'll have to post about it in Manufacturers.
Title: Re: Living with Food Allergies, FEB 2013
Post by: Janelle205 on May 24, 2013, 05:49:40 PM
I use the Pepperidge Farm onion buns, which are way, way better than any other commercially made onion bun (smaller, more flavor). 

I do not avoid peanuts or tree nuts.  They work for my egg and soy allergies, but do have soy oil and lecithin, and my egg tolerance is pretty high.  They also have poppy seeds, so would probably be a no-go for anyone with seed allergies.
Title: Re: Living with Food Allergies, FEB 2013
Post by: GoingNuts on May 24, 2013, 06:55:20 PM
I've never seen the onion buns, I'll have to check them out.  Their regular buns list sesame as an ingredient, so these might too, but you never know.

Thanks!
Title: Re: Living with Food Allergies, FEB 2013
Post by: Janelle205 on May 24, 2013, 10:03:14 PM
GN - I just checked them, and they have sesame as an ingredient.  Sorry.
Title: Re: Living with Food Allergies, FEB 2013
Post by: GoingNuts on May 25, 2013, 09:05:47 AM
Gah! 

Thanks anyway Janelle!
Title: Re: Living with Food Allergies, FEB 2013
Post by: spacecanada on May 25, 2013, 10:00:02 AM
A volunteer fed peanuts to the birds at work yesterday.  Not knowing this (because the staff know the animal food has to be TN/PN-free), when I picked up the bird I got hives all over my arm and neck.  Major sinus headache too.  We've now posted a sign in the room.
Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on May 25, 2013, 01:42:05 PM
Ugh.


Today: ants.

For the last couple of days we've seen tiny black ants in the kitchen. I want to get rid of them. I bought some ant traps. Yes, I know they have PB in them.  But ugh.  When I opened them up last night WHOOOSH came a strong peanut smell. Ick. 

The ants were going close to the pantry this morning, so I created a wall of cinnamon that they won't cross.  It will keep them in the area where the traps are.  At first I could only find teh good Penzey's cinnamon, but DH pulled out the giant container of cheap cinnamon. I don't like cinnamon--didn't know we had an el cheapo brand.
Title: Re: Living with Food Allergies, FEB 2013
Post by: GoingNuts on May 25, 2013, 03:53:25 PM
Good to know about the cinnamon.  I never knew that.

Ick, we gett them every spring, particularly after a good rain.  Fascinating little buggers, I just don't want them in my house!
Title: Re: Living with Food Allergies, FEB 2013
Post by: Janelle205 on May 25, 2013, 04:17:27 PM
Mac, can you get the Terro baits?  I don't think that they have PB - they are filled with a clear gel/liquid and don't have any smell that I noticed.

And they work.  Way better than anything else that I have tried.
Title: Re: Living with Food Allergies, FEB 2013
Post by: PurpleCat on May 26, 2013, 12:59:26 PM
Baking cookies for a friend who is new to gluten free.  Like baking for DD in the beginning.  Reading every label 3 times and photo copying ingredients for her to read.  She's going to be surprised!

My kitchen was spotless when I started.

I baked her cookies first and now have baked some for her family and us that are not gluten free.
Title: Re: Living with Food Allergies, FEB 2013
Post by: SilverLining on May 27, 2013, 06:54:34 AM
And another one in the family with allergies.   :banghead:
Title: Re: Living with Food Allergies, FEB 2013
Post by: GoingNuts on May 27, 2013, 07:25:55 AM
Oh no, SL.  Who?  What?
Title: Re: Living with Food Allergies, FEB 2013
Post by: SilverLining on May 27, 2013, 08:02:00 AM
One of my grandson's.  he outgrew soy allergy and a dairy intolerance.  Now he's developed an insect allergy.  A spider bite had his arm tripled in size.  It was mostly back to normal when I saw it (four days later) but, what looked like hives all over his back and chest.  Apparently not fom the spider bite but from something else, bites while outside playing.
Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on May 27, 2013, 09:04:39 AM
Hmmm . . . is that necessarily an allergy?  I know kids who do that with all kinds of bugs.
Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on May 27, 2013, 09:05:57 AM
I did look for the Terro baits but only had the chance to do this at 10:00 pm at our CVS. This is what they had--the Raid baits. They are cream colored and look like a flower on top.  Ants gone within 18 hours (most activity had ceased after 12 hours).
Title: Re: Living with Food Allergies, FEB 2013
Post by: SilverLining on May 27, 2013, 09:44:42 AM
Hmmm . . . is that necessarily an allergy?  I know kids who do that with all kinds of bugs.

One bite had his arm three times it's normal size (as well as red, and various other symptoms) and even with benedryl it was still somewhat swollen three days later.  I don't think that's "normal" and anyone who reacts that badly should get it checked.
Title: Re: Living with Food Allergies, FEB 2013
Post by: GoingNuts on May 27, 2013, 06:54:20 PM
 :disappointed:
Title: Re: Living with Food Allergies, FEB 2013
Post by: YouKnowWho on May 27, 2013, 10:03:52 PM
Leaving in less than a week and in a total panic.  Hotel with fridge and microwave, but no idea of the size.  Much prefer the kitchen of a cabin or even larger hotel room. 

DS1 can't do gluten and egg - that means packing his bread, sunbutter and jelly.  DS2 can't do peanuts. 

DH is trying to go primal.  And he expects me to give a rat's patootie about his dietary concerns.  Give me a freaking break.

Concerned because we are headed to a Bavarian town (don't get too excited, northeast corner of GA) and several state parks.  Not finding a single go-to fast food place local.  Nor am I finding a chain grocery. 
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on May 27, 2013, 10:10:09 PM
Do you need some go-to things with only rice or potato based starches?

I've done that kind of hotel cooking, btw.

Crockpot Spanish Rice-- brown rice, salsa, black beans and corn.  Can top w/ cheese if you're feeling saucy.

Microwave lentils, sausage, and carrots-- just like it sounds-- salt after cooking.

Corn tortillas and cheese and tomato paste == mini-pizzas.  (yeah, I know-- but it works in a pinch)
Title: Re: Living with Food Allergies, FEB 2013
Post by: YouKnowWho on May 27, 2013, 10:16:25 PM
Unfortunately the one who needs to do beans the most, cannot due to heartburn issues.  If it's dried, he is miserable.  Thankfully it's only four days and it's definitely doable thanks to many convenience foods that are not as good as eating at home.

I was more peeved at DH ranting about how jelly keeps up DS1's inflamation and how I should be more concerned about HIS paleo crap. 
Title: Re: Living with Food Allergies, FEB 2013
Post by: twinturbo on May 28, 2013, 07:51:36 AM
I've been holding on to this one for a few days. Ponder with me.

In the section of frozen novelties I was mentally hemming and hawing some So Delicious bars for DS1 which I'm sure looks indistinguishable from zoning out, but there was a new product next to it that caught my attention. It had a picture of a huge yellow lab head above a bunch of peanutty stuff. Aw yeah, frozen dog treats in the dairy case. At first I thought maybe some customer had misplaced it there but nope, thank you Shaw's what a stomach turning joy shopping for my food mixed in with dog food.
Title: Re: Living with Food Allergies, FEB 2013
Post by: YouKnowWho on May 28, 2013, 10:21:42 AM
LOL - You would hate our natural food store then.  They have bakery type cakes that are made specifically for dogs in the freezer section.  They have signs all over them about not being for human consumption but they really look like a cake you could pick up in the bakery.  They don't have many options in the freezer section and have opted to put them in with the GF options.

Our grocery stores all offer Frosty Paws, frozen dog treats and Bil Jac but they have it in a 4ft section off to itself.
Title: Re: Living with Food Allergies, FEB 2013
Post by: twinturbo on May 28, 2013, 10:28:19 AM
By comparison Paris is worse, much worse, but yeah I'm not down with food made for animals mixed amongst the food I buy for my children. Shaw's can afford to get dedicated freezer space for pet food.
Title: Re: Living with Food Allergies, FEB 2013
Post by: PurpleCat on May 29, 2013, 08:06:19 AM
So.....long week for me.....

Dropped DD off at school yesterday at 5:30 and they are in Washington, DC.  First day went well....mostly food from home.....dinner was at the Ronald Reagan Mall and she brought a homemade roll and Subway made her a safe sandwich on it.  She texted me this morning that breakfast was great!  They made her berries, bacon and home fries...all safe and she is happy.  Off she goes!  She promised to text me after each meal and even called a few times yesterday....mostly cause it was a long day of travel.

They drove past that huge train wreckage in Baltimore while it was burning, and got soaked in the evening while visiting memorials.  Other than that, she told me the hotel room is small!  Well, yes, 4 girls and all their stuff - because heaven forbid we arrive without all our hair appliances.  How these hotels handle the electricity with all these kids - 4 to a room, charging too many devices, plus apparently the boys bring their Play Stations, and the hair dryers, straighteners, etc.....

She's happy....I'm keeping busy and keeping my phone at my side!
Title: Re: Living with Food Allergies, FEB 2013
Post by: krasota on May 30, 2013, 01:27:23 PM
And in the "unexpected potential sources of exposure" . . .

We received testing materials from Seton today.  DS is homeschooled and we've chosen to administer the CAT for the state-required proof of progress.  The instructor materials are rented.  Today, the packet arrived with lots of liquid staining.  I'm assuming coffee, but I have to wonder . . . is there soymilk?  Nutmilk?  Regular milk?  Coffee with ground nuts or a substitute containing barley?

I no longer check out library books for myself because of crumbs and cats.  Didn't much think about testing materials, but it's the same thing.

And yes, I washed my hands right away. 
Title: Re: Living with Food Allergies, FEB 2013
Post by: spacecanada on May 31, 2013, 09:26:01 AM
Drove behind a police car today and the three letters of its number plate were NKA.  All I could think of was 'no known allergies'.  :)
Title: Re: Living with Food Allergies, FEB 2013
Post by: SilverLining on May 31, 2013, 12:51:25 PM
Drove behind a police car today and the three letters of its number plate were NKA.  All I could think of was 'no known allergies'.  :)

 ;D
Title: Re: Living with Food Allergies, FEB 2013
Post by: notashrimpwimp on June 01, 2013, 12:09:58 AM
And so it goes.
Title: Re: Living with Food Allergies, FEB 2013
Post by: GingerPye on June 01, 2013, 12:16:23 PM
OMGoodness, that's awful, SW.   :(
Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on June 01, 2013, 01:08:03 PM
 Krasota CM dealt with this issue but her DD does cyberschool and has a 504. One accommodation is new textbooks and materials.

How often will you have to do state testing? If you have to do much throughout the years I'm not sure how a 504 would would with the Commonwealth itself rather than CCS but it's something to keep in mind--even if only for that accommodation. DS had one--the first in our area for LTFAs. 
Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on June 01, 2013, 01:08:38 PM
NASW that is awful. Awful. ((Hugs))
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on June 01, 2013, 04:51:39 PM
:console: NASW-- "hostile work environment," much?


Krasota, what Mac says is true-- in fact, just this morning DD took the SAT with a proctor in a room by herself.  A room where food was controlled (basically verboten for the last week, in fact, and we still wiped things down).

Those 504 provisions all those years ago... laid the ground work for the accommodations from College Board.

Title: Re: Living with Food Allergies, FEB 2013
Post by: starlight on June 02, 2013, 03:18:04 PM
Not a shrimp, are you in the US or Canada? I just read this article and thought of you. http://www.indystar.com/article/20130531/NEWS05/305310057/Indianapolis-pays-85-000-to-settle-former-worker-s-suit-over-paprika-sniffing-dog?nclick_check=1
Title: Re: Living with Food Allergies, FEB 2013
Post by: notashrimpwimp on June 02, 2013, 04:39:56 PM
Thank you everyone. :grouphug:

Starlight, I am in the US and I have thought about trying to find a way to alert me before I start to react. A shellfish and nut sniffing pup sounds like a lifesaver.

Title: Re: Living with Food Allergies, FEB 2013
Post by: SilverLining on June 02, 2013, 09:32:57 PM
What a situation Starlight.  One needs the dog, the other can't breath around it.
Title: Re: Living with Food Allergies, FEB 2013
Post by: krasota on June 03, 2013, 09:59:13 AM
The test materials for Ronan are unused and new.  It's the instructor booklet which is reused and dirty.  And I can't get a 504 for *myself*.    Also, the testing material is purchased/rented from Seton--the Commonwealth isn't involved.  I'll contact Seton when we're back home. 
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on June 03, 2013, 11:53:55 AM
I'm not so sure about that, actually, Krasota.

I think that disability in a parent is also potentially something which can result in a loss of civil liberties, or interfere with a student's access to the educational environment.  Those things can be written into a 504 plan.

Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on June 03, 2013, 01:25:00 PM
We had a plan for dinner.

DS goes from school to a downtown theatre. They go have dinner nearby before the performance. There is a Chipotle there--and many other restaurants. I give dS a Chipotle coupon for a burrito and some money for a drink--not enough for dinner by itself.

I misunderstood the teacher I guess. DS texts me and tells me they aren't released that they are going to a place we haven't been (across from where we have been). He allergy info has everything but peanut and a few vegetarian things that should work.


I'll transfer some money into his account, and he can use his ATM card.

Should work but yikes.
Title: Re: Living with Food Allergies, FEB 2013
Post by: YouKnowWho on June 07, 2013, 10:42:57 AM
We had our first vacation in years where DS1 didn't have a reaction or barf.  Granted he didn't have a reaction on our last trip to FL, he just got a 24hr stomach bug and projectile vomited all over the back of the new car.  But this is HUGE for him and us.
Title: Re: Living with Food Allergies, FEB 2013
Post by: GingerPye on June 07, 2013, 12:22:57 PM
That is huge!!   :thumbsup:
Title: Re: Living with Food Allergies, FEB 2013
Post by: Janelle205 on June 07, 2013, 02:40:07 PM
So glad that you had a successful trip allergy-wise. :)
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on June 08, 2013, 09:55:04 AM
Indeed-- that is a GREAT milestone.



Today I'm being oddly pleased by the fact that due healing from relatively major oral surgery means that questions re: why DD isn't eating anything at tonight's potluck are less awkward than usual!   Yay-- for once, it's not about ALLERGIES!

 :happydance:
Title: Re: Living with Food Allergies, FEB 2013
Post by: Janelle205 on June 08, 2013, 10:28:26 AM
Manufacturers that change product formulations. :rant:  Especially when it is the ONLY type of a product that I can have that I use frequently.


NOTHING is improved by adding soy protein.  :paddle:
Title: Re: Living with Food Allergies, FEB 2013
Post by: GingerPye on June 08, 2013, 10:31:19 AM
Oh dear.   :-/  So sorry, Janelle. 
Title: Re: Living with Food Allergies, FEB 2013
Post by: Gray on June 09, 2013, 10:33:18 AM
*** poof ***
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on June 09, 2013, 10:38:05 AM
That is super-encouraging, Gray!!

We're considering the merits of doing a more aggressive egg challenge this coming fall.  Considering the likelihood that DD has been dosed with pretty high concentrations of egg-- especially in restaurant meals while we were abroad-- we really think that she might be able to tolerate regular amounts of cooked egg.


Right now, we've been seeing how well she holds tolerance while we withdraw the dose for a few months.  Which reminds me-- time to make minimuffins!


Title: Re: Living with Food Allergies, FEB 2013
Post by: Gray on June 09, 2013, 10:46:28 AM
That's great CM!  I hope things continue to go well with the egg dosing.
Title: Re: Living with Food Allergies, FEB 2013
Post by: Janelle205 on June 09, 2013, 03:39:59 PM
I'm reacting to blueberries now, apparently.  :rant:


I do not have very many safe fruits.  I can eat berries (well, maybe), pineapple, some varieties of citrus, grapes, and bananas in the winter.


Dear body - I am in charge of this ship, and this is crap.  We are not doing this.
Title: Re: Living with Food Allergies, FEB 2013
Post by: Gray on June 10, 2013, 08:36:37 AM
Sorry to hear that Janelle  :grouphug:


CM, have you temporarily stopped the dosing in the past for shorter amounts of time and how did the tolerance hold then?  I forget, how long have you been egg dosing?  I wonder where this will all lead with our DDs.  When I asked our new allergist at our last appointment whether dd will outgrow, she thought it may be possible that she will always just have partial tolerance.  I guess time will tell.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on June 10, 2013, 08:56:40 AM
That's kind of what our allergist thinks, too, with DD.  She may never have normal tolerance.

I don't either, actually-- either to milk or to egg.

We've been dosing for over 2y at this point, and had gotten up to about 350 mg of protein at one point, but the problem with pushing the dose HIGHER is that if you have an unexpected torque applied to the system somewhere else, the threshold can become unexpectedly 30% lower overnight-- and then, WHAM-- anaphylaxis.  So our allergist wants us to just keep dosing with a LOW dose, and not worry about pushing things.  Not sure if that is related to adolescence/hormonal shifting underlying things or not, but it's possible.  It's also true that we know already that DD is in this category of kids-- it's like trying to submerge a raft-- when you push down on one corner, something else pops up elsewhere. 

Her dose didn't hold completely when we tried this a year ago.  But it wasn't too bad to take a couple of weeks to bring it back up.

Title: Re: Living with Food Allergies, FEB 2013
Post by: Gray on June 10, 2013, 09:37:46 AM
Yes, our allergist does NOT push things either - she wants a dose that dd does NOT react to.  Then, if dd is consistent with that dose for a few months, sometimes I'll get the ok to increase it.  She spoke of "risk management", which made perfect sense to me.

She mentioned the research of people going through desensitization, holding a dose for sometimes years, and then WHAM, ana.

I feel fine with this approach, but it could be dangerous for patients/caregivers who don't understand that they always have to be prepared for a reaction.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on June 10, 2013, 10:05:05 AM
Yes!!  This is very dangerous, even under the advice of a good allergist.   I'm not sure how we'd manage this if DD went to school. 

The other thing to bear in mind is that this is about 1/25th of an egg DAILY, and baked into a mini-muffin that at 350F for fifteen to twenty MINUTES.  So the protein is pretty much totally heat-denatured-- and it's still dangerous.

Title: Re: Living with Food Allergies, FEB 2013
Post by: MandCmama on June 10, 2013, 10:37:51 AM
DS2 is getting closer to his baked egg challenge.  Originally our allergist didn't want to do it for that very reason- it's hard to know how much egg is in something, how well it's cooked, etc etc.  She basically doesn't want us getting too comfy.  DS2 is starting pre K in august, so she wants to see where we stand.  I just know he's going to fail.  It would be glorious if he passed.  But I know he's going to fail.

What is generally the procedure for a fail?  This office is NOT in a hospital, though close to several.  Will they call 911 and transport do you think?
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on June 10, 2013, 11:07:39 AM
Oh, we definitely still avoid.

But we don't do some of the avoidance that we once found necessary-- that is, now she can eat in restaurants, or stuff that is made in a facility with egg, or made on shared/cleaned lines.  She can get some vaccinations that were off limits before.

That kind of thing has been life-altering.  It's an insurance policy against low-level XC, basically.  In our experience, that has TOTALLY been worth it.

We're not deluding ourselves that we can actually eliminate her allergy, though.  I seriously doubt that is going to happen.
Title: Re: Living with Food Allergies, FEB 2013
Post by: LinksEtc on June 10, 2013, 09:11:36 PM
MandCmama, different offices seem to have somewhat different procedures and protocols for the challenges.  I would think for a major reaction, 911 would probably be called, but I'd suggest asking the allergist what to expect beforehand.  A lot of times the fail symptoms are relatively minor since they start out with such small doses and the patient is then kept a while for observation.

Good luck!

Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on June 13, 2013, 11:58:55 PM
Living with food allergies means...


KNOWING that any e-mail entitled

"Limited Time Offer: WEN Summer Mango Coconut" from Wen Hair Care...

has to be spam.  By definition.    :P
Title: Re: Living with Food Allergies, FEB 2013
Post by: TabiCat on July 14, 2013, 10:28:46 PM
We received a gift card to one of those Japanese Stake houses as a "parting gift" from our small group bible study. DHleaves to starting new job next week so he and I made a date night of it tonight.

The first thing chef said to the table after good evening was. " Do we have any food aallergies tonight?" I listened in to the next table and the same.

We are making headway I think.
Title: Re: Living with Food Allergies, FEB 2013
Post by: twinturbo on July 18, 2013, 12:32:11 PM
The ultimate paradox occurs when I run into someone who full on anaphylaxes to tree nuts isn't sure if she's allergic to nuts right after someone who thinks she's "allergic" to gluten unless it's organic, non-GMO gluten then it's wholesome.

The next person to use the term gluten freedom to me better duck--fast.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on July 18, 2013, 12:39:08 PM
LOL.  There's a lot of that out here, I'm afraid.

You're now living in the food allergy version of Willy Wonka's factory, for whatever it's worth.  Reality is merely one of... er... many apparent life-choices for the residents.   It's Choose-Your-Own-Adventure, the Special Diet edition.

  :hiding:
Title: Re: Living with Food Allergies, FEB 2013
Post by: TabiCat on July 18, 2013, 07:49:50 PM
oh TT when did you start hanging out with my sister.

"Allergic" to soy, and dairy+ gluten intolerant ALL SELF DIAGNOSED. But wait she can tolerate non-GMO soy and dairy from Jersey cows because the protein is different. Scary is that she gets her info online would makes me really worried for newbies out there dealing with dairy or soy allergies.    :hiding:
Title: Re: Living with Food Allergies, FEB 2013
Post by: YouKnowWho on August 03, 2013, 09:45:34 PM
Just to add to an already fun day, I had to drag my introverted self to a birthday party for one of DS2's classmates.  And all in all, it wasn't that bad  ;D

DS2 basically refused all food but the watermelon cut at our local grocery store (confident in how they handle things) and water to drink.  It took everything I had to drag him to drink and eat because there was a ginormous bounce house complete with slide. 

It's time for the birthday cake and I do my usual - grab a paper plate from the bottom of the pile and add his cupcakes to it.  The party was comprised of family, kids from class and kids from the neighborhood.  Another little boy asked DS2 why he had his own cupcakes.  DS2's mouth was full and he was trying to chew (mommy high five for waiting until his mouth was clear) when another child from his class mentioned he was allergic to peanuts so he didn't eat birthday cake at parties.

At that point, the little boy was being handed his slice of cookie cake and he asked if it had peanuts in it to the dad who was serving it.  He said he didn't know and asked if he had allergies.  The little boy said "I don't want to eat it if it has peanuts in it because it will make DS2 allergic."  I thanked him and told him it was okay to eat the cake, DS2 had his safe treat and that DS2 wouldn't have an issue unless he ate the cake.  This little boy was the only one at the table to finish the cake, icing and all and got up to throw his plate away and went inside.  Came out and said "Okay DS2,  I washed my hands - we can go play again!" 

I started getting all sniffly.  I went over and half hugged the little boy and said thank you for keeping him safe.  Turns out this little boy is actually in Target with DS1 and has asked not to have his bread on sandwhiches so he can sit near DS1 because he knows he is allergic.  What a gem!

Such a different story after reading countless replies about how it's someone's Constitutional right to serve PB and allergic parents need to suck it  (avoid Cafe Mom at all costs).
Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on August 03, 2013, 10:27:13 PM
Oh wow. I got teary, too. That is heart warming. Thank you for sharing.
Title: Re: Living with Food Allergies, FEB 2013
Post by: SilverLining on August 04, 2013, 07:18:05 AM
That is so sweet.  I'm glad your kids have such a wonderful friend. :)
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on August 04, 2013, 02:48:57 PM
Awwww... <sniff-sniff>

What a keeper that little gentleman is.   :smooch:
Title: Re: Living with Food Allergies, FEB 2013
Post by: GoingNuts on August 09, 2013, 09:05:00 PM
Amusing conversation with DS tonight as I reminded him to order a new MedicAlert bracelet.  He was complaining about not wanting to wear something on his wrist, and then he said that if he had to wear one he wanted it to be solid gold.

He then elaborated that he thought it should be "iced out" like a rapper's bracelet, with his allergens spelled out in tiny diamonds.  :rofl:

I suggested that he write to them and suggest a Limited Edition medic Alert Bling collection.  ;D
Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on August 10, 2013, 08:45:15 AM
:rofl:
Title: Re: Living with Food Allergies, FEB 2013
Post by: SilverLining on August 10, 2013, 08:46:23 AM
GoingNuts, my son went through that too.  He ended up getting himself a copper one.  Helps with the knees, and he likes the look more.
Title: Re: Living with Food Allergies, FEB 2013
Post by: YouKnowWho on August 11, 2013, 09:22:13 PM
Changed a rather fragrant diaper for Miss Em tonight.  And then she caught whiff of it and she started coughing.

"Mommy, I allergic to my poop - I throw up now!"

Laughed so loud, I think I scared her.  Trying to decide if it's a case of jealousy because she doesn't have allergies (I have a few foods that I won't let her eat because of sheer cost) or just following the protocol in the house.
Title: Re: Living with Food Allergies, FEB 2013
Post by: LinksEtc on August 12, 2013, 09:30:02 AM
Lol  :)
Title: Re: Living with Food Allergies, FEB 2013
Post by: hezzier on August 15, 2013, 07:42:26 PM
DS has a teacher that gets it.  Sent home a note today (not outing DS) that said due to allergies, all birthday treats must be arranged and approved ahead of time and NO NUTS!  I see this a step in the right direction!
Title: Re: Living with Food Allergies, FEB 2013
Post by: SilverLining on August 16, 2013, 06:31:30 PM
LOL @ little Miss Em.

hope it's a sign of a great year @ hezzier.
Title: Re: Living with Food Allergies, FEB 2013
Post by: catelyn on August 25, 2013, 10:03:48 AM
has anyone posted this?  Not sure where to put it.

http://therobynnest.wordpress.com/2013/06/01/when-the-worst-happens/
Title: Re: Living with Food Allergies, FEB 2013
Post by: SilverLining on August 25, 2013, 10:50:38 AM
That is powerful.  It needs to be posted separately so it doesn't get lost.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on August 25, 2013, 12:54:38 PM
Today, on my Comcast homepage--


The Health Benefits of Eating Peanuts:

Did you know peanuts can lower blood pressure, stabilize blood sugar and decrease your risk for heart disease?



 :misspeak:  :rofl:

Oh, they lower blood pressure, all right...


 as for the other two, I guess "prevention" is key, huh?   Both problems will take care of themselves if you're allergic, I suppose.  :evil:
Title: Re: Living with Food Allergies, FEB 2013
Post by: twinturbo on September 18, 2013, 01:38:13 PM
In order to take our younger MFA child to the playground we make sure we proactively bring his own set of digging toys for the sandbox. I keep them out of the way off to the side so as not to be a distraction to other kids. It astounds me that moms direct their kids over to toys that don't belong to them let them play on it first, and only ask me afterward if it's okay for their kids to use. THEN get huffy because YOUR KID's had milk playing with MY KID's personal toys. What happened to making your kids ask permission then wait to receive it?
Title: Re: Living with Food Allergies, FEB 2013
Post by: maeve on September 18, 2013, 01:54:56 PM
That's frustrating twinturbo. It has never ceased to amaze me what people will let their kids do (or do themselves) without asking permission first. When DD was a toddler, we were at Borders and this woman let her son just go up to my DD and kiss her smack on the lips. Not only is that an FA concern for us but nice to raise a little rapist who doesn't ask if it's OK to do something like that.  This woman laughed thinking it was cute; I could tell by DD's body language that she was unhappy. She is like me and has a very strict personal space bubble.  Another time it was a woman who grabbed DD's hand when DD was about 3/4ish so her tzi szu could give DD a "kiss"; it all happened so quickly that I couldn't say anything. It, of course, resulted in DD's eyes and face being swollen.

I was always taught to keep my hands to myself and not to touch anything that did not belong to me.  I guess that's not being taught these days.
Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on September 21, 2013, 02:20:45 PM
The Snickers bar next to the guy who is fixing my son's phone at the sprint store is making me nervous.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on September 21, 2013, 04:29:00 PM
Feeling VERY lucky that I didn't crack a molar watching the high school boy seated in the same room with my DD14, taking the ACT... who scarfed down both of THESE during the ten minute break-- including emptying the latter into his mouth and STILL CHEWING as he re-entered the room:

Spoiler (click to show/hide)

Yeah, mom was pretty much thinking... please-don't-be-sitting-next-to-DD-please-don't-be-sitting-next-to-DD-please-don't SNEEZE, OMG-OMG-OMG    :misspeak:

Title: Re: Living with Food Allergies, FEB 2013
Post by: PurpleCat on September 23, 2013, 01:55:15 PM
Our friendly fall squirrel is back (3rd year) and so are his peanut shell messes!  He and I should be on a first name basis!  I'm always yelling at him!  I should call him Anthony!  (Like the old commercial for Prince Spaghetti!)  He's only dining here in the fall, we must be close to where he will sleep this winter.  And none of my neighbors feed birds so where he gets the peanuts is a mystery.
Title: Re: Living with Food Allergies, FEB 2013
Post by: PurpleCat on September 23, 2013, 01:56:26 PM
and the custodian at the High School let the school nurse know they are changing the soap in the school, he gave her a cut sheet and she sent it home, today!  Wow!  and it is safe for DD, but I am ever so impressed!
Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on October 04, 2013, 11:33:51 AM
Reese's Pieces in chemistry class today. Grrrrrr.
Title: Re: Living with Food Allergies, FEB 2013
Post by: notashrimpwimp on October 04, 2013, 06:53:30 PM
The joy of finding a peanut/tree nut free bakery, only to react to a compote pie glazed with the same brush as the strawberry tart...
Title: Re: Living with Food Allergies, FEB 2013
Post by: GoingNuts on October 05, 2013, 09:53:58 PM
Yesterday I saw someone carrying a handbag monogrammed with the initials NKA, and I thought to myself, "why would anyone monogram a bag to say 'no known allergies?'".  :dunce:
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on October 05, 2013, 10:17:29 PM
:rofl:

I dunno, but CLEARLY those were the initials that I should have chosen for my child...


We chose.... poorly.   ;)
Title: Re: Living with Food Allergies, FEB 2013
Post by: YouKnowWho on October 05, 2013, 10:30:24 PM
Yesterday I saw someone carrying a handbag monogrammed with the initials NKA, and I thought to myself, "why would anyone monogram a bag to say 'no known allergies?'".  :dunce:

I may have clubbed her over the head and given it to the allergic ones to increase their chacra and put them in feng shui.  About 20 minutes spent in the health food store today shaking my head.  I guess I needed to light a big fattie.
Title: Re: Living with Food Allergies, FEB 2013
Post by: Janelle205 on October 05, 2013, 10:48:27 PM
This is a little bit more living with asthma...

Telling the home inspector that we wanted to know about any potential ventilation issues in the master bedroom, because the 5-7 daily nebs really ups the humidity in there - we're pretty sure this is why we have had 3 TV remotes in a year and 2 wireless mouses in two years give up on us.


He was super nice and thorough and went out of his way to show us ways to improve and maintain the air quality in what will hopefully be our home in about a month.
Title: Re: Living with Food Allergies, FEB 2013
Post by: GoingNuts on October 06, 2013, 07:38:37 AM
 :happydance: Janelle!

As for the monogramming, of course you all are right.  We have indeed chosen poorly.  And we should instruct our children to learn from our mistakes when naming their children.

Along those lines, elder DS's girlfriend is severely allergic to berries and bananas, and her sister has MFA's.  A little cousin anaphylaxed from his birthday cake at his first birthday party.  Clearly, this relationship should go no further.  I'd better start conspiring to break them out now.   ;)

JK.  I like her.  We'll deal with the atopic grandchildren if things continue to develop.  ;D
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on October 07, 2013, 08:14:20 PM
My 14yo DD is (cautiously, to be sure-- she started out with literally a CRUMB, and is now eating something about the size of a very small donut-hole) eating store-bought Chocolate-covered Old-fashioned donuts (well, small pieces, as noted) which are (apparently) pn/tn free... and they even contain egg yolk as a minor ingredient.... WOW-WOW-WOW...

(These-- and NO, absolutely NO endorsement intended as I have most definitely not called on these, but she has also eaten their hot-dog/picnic buns previously, and the cookies are made in a different facility)

and this makes me actually want to weep with amazement/nostalgia/joy for her.   :coolbeans: :heart:


Title: Re: Living with Food Allergies, FEB 2013
Post by: YouKnowWho on October 07, 2013, 08:47:26 PM
YAY CM!  That is awesome.
Title: Re: Living with Food Allergies, FEB 2013
Post by: rebekahc on October 07, 2013, 09:33:58 PM
My 14yo DD is (cautiously, to be sure-- she started out with literally a CRUMB, and is now eating something about the size of a very small donut-hole) eating store-bought Chocolate-covered Old-fashioned donuts (well, small pieces, as noted) which are (apparently) pn/tn free... and they even contain egg yolk as a minor ingredient.... WOW-WOW-WOW...

(These-- and NO, absolutely NO endorsement intended as I have most definitely not called on these, but she has also eaten their hot-dog/picnic buns previously, and the cookies are made in a different facility)

and this makes me actually want to weep with amazement/nostalgia/joy for her.   :coolbeans: :heart:


 :happydance: :happydance: :happydance:
Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on October 07, 2013, 10:08:41 PM
CM, that is so huge. Wow.  I don't even know what else to say, because it is so incredibly amazing. It brings tears to my eyes.  I'm really thrilled for her and for you and your DH. It means so much to have made this kind of progress. Who could ever imagined seven years ago?  Five years ago?
Title: Re: Living with Food Allergies, FEB 2013
Post by: SkyScorcher on October 07, 2013, 10:59:07 PM
I've eaten three entire doughnuts now.

These are the best things ever.

Must.
Stop.
Eating.
The doughnuts.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on October 07, 2013, 11:08:43 PM
I think that this is about the point at which one points out that trans fats can get STUFFED in light of something that won't kill you instantly.

Maybe that is a remark that actually would ONLY be understood here, come to think of it.   ;D
Title: Re: Living with Food Allergies, FEB 2013
Post by: SkyScorcher on October 07, 2013, 11:20:41 PM
Yeah, boy, Life Skills really comes in handy here, eh?

'Let's see.... 3g of trans fat per serving.... TOTALLY WORTH IT.'
Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on October 07, 2013, 11:20:49 PM
That's so wonderful, Kiddo.  You've got a lot of people here who are so happy for you!  :yes:
Title: Re: Living with Food Allergies, FEB 2013
Post by: notashrimpwimp on October 08, 2013, 05:50:24 AM
 :thumbsup: What an amazing feeling!

Natural Flavors

You're ubiquitous.
I'm incredulous.

How to manage restrictions that are dietary
when your identity's considered proprietary?


 :hiding:
Title: Re: Living with Food Allergies, FEB 2013
Post by: GoingNuts on October 08, 2013, 06:00:18 AM
Hooray Sky!!!  Woo-hoo!
Title: Re: Living with Food Allergies, FEB 2013
Post by: LinksEtc on October 08, 2013, 06:26:10 AM
Congrats CM & Sky!!!  That's wonderful!    :heart:   I'm really happy for you both.



I like the little poem notashrimpwimp  :)    -   :paddle:  to "natural flavors", etc.
Title: Re: Living with Food Allergies, FEB 2013
Post by: GingerPye on October 08, 2013, 09:32:55 AM
Sky,  :thumbsup: :thumbsup: :thumbsup:
One for each donut.

LOL

I know how your mom is feeling.  Did she get pics?
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on October 08, 2013, 09:40:37 AM
Does a picture of the EMPTY package count?  I could still get one of those.  LOL!!
Title: Re: Living with Food Allergies, FEB 2013
Post by: GingerPye on October 08, 2013, 09:52:30 AM
Well, I guess so --- I was thinking of the pic of your DD eating her first store-bought donut.

I have a few pics like that of my kids and their "firsts" --- weird that we FA parents take pics of our kids eating foods for the first time .... LOL
Title: Re: Living with Food Allergies, FEB 2013
Post by: SkyScorcher on October 09, 2013, 05:51:09 PM
I have eaten 4 of a 6-box of jelly-filled powdered doughnuts. 

Saturated fat has never tasted this good.

Will post pics. 
Title: Re: Living with Food Allergies, FEB 2013
Post by: SilverLining on October 09, 2013, 09:37:02 PM
So happy for you.  And laughing as I read this.
Title: Re: Living with Food Allergies, FEB 2013
Post by: twinturbo on October 10, 2013, 11:35:39 AM
That Q&A from Sicherer about anaphylaxis from contact is a joke. Never, ever does he address contact-to-ingestion in the same response. Have I ever posted the sign from Sicherer's waiting room? Huge all caps that no food is allowed for the safety of patients. Apparently food has magical residue properties in his waiting room but not in a classroom. Another fine example of lab controls that don't exist in real life.

How much would I piss him off if I requested he start to include addressing external validity in his answer as Dr. Wood does. Enough to get our test results first then get pedantic later. Who in their right minds is worried about getting peanut butter on the small of their back for 30 seconds? Obvious answer: no one. So let's drop the polite fiction we're hysterical about peanut butter on our pinky toe in a lab when the true concern is the residue of a sticky, durable protein that is a known potent allergen very likely to induce anaphlaxis in extremely low dosage, yet unlikely to be outgrown, left by HANDS transmitted by hand or surface to other HANDS. Hands that kids use to eat with, pull at wiggly teeth, rub their faces.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on October 10, 2013, 06:08:26 PM
 :yes:



http://www.usatoday.com/story/news/nation/2013/10/10/newser-alzheimers-peanut-butter/2961393/


That's just...  weird in the context of FA.

{brain melting}

Hmmm.
Title: Re: Living with Food Allergies, FEB 2013
Post by: ajasfolks2 on October 10, 2013, 06:49:36 PM
That Q&A from Sicherer about anaphylaxis from contact is a joke. Never, ever does he address contact-to-ingestion in the same response. Have I ever posted the sign from Sicherer's waiting room? Huge all caps that no food is allowed for the safety of patients. Apparently food has magical residue properties in his waiting room but not in a classroom. Another fine example of lab controls that don't exist in real life.

How much would I piss him off if I requested he start to include addressing external validity in his answer as Dr. Wood does. Enough to get our test results first then get pedantic later. Who in their right minds is worried about getting peanut butter on the small of their back for 30 seconds? Obvious answer: no one. So let's drop the polite fiction we're hysterical about peanut butter on our pinky toe in a lab when the true concern is the residue of a sticky, durable protein that is a known potent allergen very likely to induce anaphlaxis in extremely low dosage, yet unlikely to be outgrown, left by HANDS transmitted by hand or surface to other HANDS. Hands that kids use to eat with, pull at wiggly teeth, rub their faces.



Have I told you lately how much I love you?

 :smooch: :smooch: :smooch:
Title: Re: Living with Food Allergies, FEB 2013
Post by: twinturbo on October 10, 2013, 07:16:20 PM
What's bananas is he's a great doctor, extremely nice guy, and incredibly accomplished researcher. In person he is exacting (which I LOVE), not at all dismissive of concerns, and completely open to outliers. I think the problem is in two parts. First, he answers questions as asked so the primary responsibility lies in a faulty question. Note to Allergic Living, ask about contact-to-ingestion with population and ecological validity. Second, he's busy so one could reasonably assume a pat question receives a pat answer to save himself time so he can treat patients like my kids. He's got to cut some corners assuming he actually sleeps, eats and showers within a 24 hour period.

Off to go soothe self with gym and tasteless, chalky protein supplement.  :tongue:
Title: Re: Living with Food Allergies, FEB 2013
Post by: Janelle205 on October 10, 2013, 09:10:25 PM
I think that I may be developing a blueberry allergy.

I refuse to believe this.  I need a ostrich/head in the sand smiley.
Title: Re: Living with Food Allergies, FEB 2013
Post by: SilverLining on October 11, 2013, 08:28:46 AM

[url]http://www.usatoday.com/story/news/nation/2013/10/10/newser-alzheimers-peanut-butter/2961393/[/url]


That's just...  weird in the context of FA.

{brain melting}


I hope the patient remembers if they are allergic to pb.  Then they could use strawberries.  Because, for this specific test, a pb alternative would not work.
Title: Re: Living with Food Allergies, FEB 2013
Post by: krasota on October 14, 2013, 12:08:52 PM
Picked up a package of Brach's candy corn hoping that this was the year they'd decided that they could go top 8 free and be in a dedicated facility.  (Hey, optimism.)

Realized after a few seconds I'd picked up a package of "candy corn and peanuts".  Yep.  Big ol' bag of shelled peanuts mixed in with candy corn.

Goodbye, optimism.
Title: Re: Living with Food Allergies, FEB 2013
Post by: notashrimpwimp on October 14, 2013, 01:44:08 PM
Allergies complicate doing a solid for one's mother. I know she loves nut and seed butters so I decided to drop in to the health food store in the complex I was visiting. I emerged, red-faced and hives-sprinkled. Apparently they have a peanut grinding machine too.

Then someone spilled their drink and I rushed to help clean it... only to discover it was of the strawberry variety.  :hiding:
Title: Re: Living with Food Allergies, FEB 2013
Post by: YouKnowWho on October 14, 2013, 07:03:28 PM
Picked up a package of Brach's candy corn hoping that this was the year they'd decided that they could go top 8 free and be in a dedicated facility.  (Hey, optimism.)

Realized after a few seconds I'd picked up a package of "candy corn and peanuts".  Yep.  Big ol' bag of shelled peanuts mixed in with candy corn.

Goodbye, optimism.

I must figure out how to transfer pictures from my phone to here.  I also picked up the same bag and was  <insert O.O eyes>

Is it a southern thing?  Must admit salty peanuts and sweetened candy corn sounded good.  Not enough to buy but I was intrigued.
Title: Re: Living with Food Allergies, FEB 2013
Post by: PurpleCat on October 15, 2013, 02:20:15 PM
OH skip Brachs.  Starburst candy corn RULES in our house!!!!!   :hiding:  I eat too many - they are so yummy!
Title: Re: Living with Food Allergies, FEB 2013
Post by: krasota on October 15, 2013, 07:26:20 PM
OH skip Brachs.  Starburst candy corn RULES in our house!!!!!   :hiding:  I eat too many - they are so yummy!

Um, Starburst "candy corn" is fruit flavored, not mellowcreme.  Doesn't count.   :disappointed:
Title: Re: Living with Food Allergies, FEB 2013
Post by: PurpleCat on October 16, 2013, 07:03:52 AM
OH skip Brachs.  Starburst candy corn RULES in our house!!!!!   :hiding:  I eat too many - they are so yummy!

Um, Starburst "candy corn" is fruit flavored, not mellowcreme.  Doesn't count.   :disappointed:


I thought so at first, but one taste and well....winner!!!!
Title: Re: Living with Food Allergies, FEB 2013
Post by: krasota on October 17, 2013, 10:43:26 AM
OH skip Brachs.  Starburst candy corn RULES in our house!!!!!   :hiding:  I eat too many - they are so yummy!

Um, Starburst "candy corn" is fruit flavored, not mellowcreme.  Doesn't count.   :disappointed:


I thought so at first, but one taste and well....winner!!!!

Oh, I don't doubt that they are tasty and addictive like crack, but I want mellowcreme, not artificial fruit flavor. 

After last year's ranting, I never did make them like I swore I would.
Title: Re: Living with Food Allergies, FEB 2013
Post by: Gray on October 19, 2013, 03:05:56 PM
So, dd has been doing great with the 2 crackers for months now.  We have permission to go up to 3 crackers if we want as long as no symptoms.  The allergist and I both don't have a strong opinion on where all this will lead or whether it will offer more long term protection.

What do some of you call this place - The Source of All Knowledge?  LOL

Any opinions on continuing to up the dose?  Don't worry - I won't take opinions shared as medical advice.  I'm just curious what you think.

Title: Re: Living with Food Allergies, FEB 2013
Post by: PurpleCat on October 19, 2013, 07:02:47 PM
DD went to her first Homecoming Dance tonight.  Her first dance in High School.  She's going to have her eyes opened tonight.  Bet the conversations I had with her were nothing like the conversations many other Mom's had with their daughter's tonight.  Allergies add a whole new dimension to parenting!


Now....just waiting......
Title: Re: Living with Food Allergies, FEB 2013
Post by: GoingNuts on October 19, 2013, 08:35:32 PM
PC -  :grouphug:

Fill us in tomorrow!
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on October 19, 2013, 09:00:03 PM
Any opinions on continuing to up the dose?


We've been disconcerted enough with many of the reports of out-of-the-blue anaphylaxis that we've kept DD's dosing low intentionally with egg, a previous anaphylaxis trigger.

IMMV, of course.  But this is a conversation we definitely had with Dr. Awesome. 
Title: Re: Living with Food Allergies, FEB 2013
Post by: krasota on October 19, 2013, 10:59:27 PM
I was bamboozled!  Swindled!  SHENANIGANS!

Starburst "candy corn" has the texture of candy corn (not unlike paste), but the flavors range from cough syrup to furniture polish.   :fishslap:
Title: Re: Living with Food Allergies, FEB 2013
Post by: PurpleCat on October 20, 2013, 08:21:16 AM
I was bamboozled!  Swindled!  SHENANIGANS!

Starburst "candy corn" has the texture of candy corn (not unlike paste), but the flavors range from cough syrup to furniture polish.   :fishslap:

 :bye:  We just opened another bag!!!  So Yummy!  Never heard they tasted like furniture polish - LOL!  I've never eaten that before!  LOL!
Title: Re: Living with Food Allergies, FEB 2013
Post by: PurpleCat on October 20, 2013, 08:41:48 AM
DD called DH to pick them up 15 minutes early.  Apparently it's not cool to stay at the Homecoming dance until it ends.  Too funny!

She took ventilin to prevent an asthma flare up before they went to the school, her choice.  She's had past asthma issues with too much laughing, dancing and night air.  When her asthma flares during the night, I have to quickly figure out if it's allergy or asthma.  I was so glad to see I did not need to ask her to take it.  She did it for herself!

She had fun.  She ate nothing.  She had a couple bottles of water and never put them down until they were empty.  My rule....put your drink down, never drink from it again.  Toss and get a new one.  I'd rather give her extra money for extra drinks.  For allergies, cause someone else may take a drink from her bottle, for life, cause someone might drop something like a drug in it.

They had baked goods by the student council and packaged munchie snacks.  DD said all the munchie snacks were in big bowls mixed together and people touching baked goods were touching them so she decided she did not want to eat or touch any of them.

They had chaperones in the bathrooms so those rooms were not messed up.  (my worry, if someone gets sick after eating an allergen and you know, the toilet is not clean.....and she, oh never mind, it's gross to think of....but necessary.)  I had told her to put toilet paper on the seat.

Sounds like the chaperones did a good job dealing with the kids that did arrive after drinking and there were a few kids who crashed the dance that the chaperones went on the prowl to kick out.

There was no special boy and no kissing opportunities to worry about.  She mostly hung with her friends and danced with a few boys.

She came home, told me a few things, said her peak meter numbers were normal, went off to shower ...........and I feel sound asleep without worry.

This morning she is up, gabby and happy.  She's going on an adventure to a huge corn maze with a friend.  (Who's mom is a High School nurse - my favorite Mom to send her off with!)

First dance at High School, a success!
Title: Re: Living with Food Allergies, FEB 2013
Post by: twinturbo on October 20, 2013, 08:59:23 AM
@Gray

How would you say quality of life is at current dose?

The Smart Gambler's Credo says
(http://jgodfrey.files.wordpress.com/2009/11/luck1.jpg?w=300&h=84)

Quote
Some luck lies in not getting what you thought you wanted but getting what you have, which once you have got it you may be smart enough to see is what you would have wanted had you known.


-Garrison Keillor


Personally? I'd hold for now. Get through the school year then try an updose once school is out of session. Clinically you have the green light therefore the decision is one of does it fit your life right now, and how much more would your family stand to gain to increasing over status quo? The data on OIT as a 'cure' is not holding up. Doesn't mean tolerance amount won't go up over time but one could argue you've got a good balance at the moment. You have the rare gift of choosing your moment to updose on your own terms.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on October 20, 2013, 09:08:03 AM
PC, that is terrific!!  I'm so glad that she had a good time.   :happydance:
Title: Re: Living with Food Allergies, FEB 2013
Post by: GoingNuts on October 20, 2013, 11:59:50 AM
Hooray for PC's DD!  :clap:

Other parents really can't imagine what these milestones mean to us.
Title: Re: Living with Food Allergies, FEB 2013
Post by: Gray on October 20, 2013, 09:31:44 PM
How would you say quality of life is at current dose?

It's great.  We are really living more of a non-allergy lifestyle now, although I always make sure dd has the EpiPens available.  I have no false sense of security.


Quote
Some luck lies in not getting what you thought you wanted but getting what you have, which once you have got it you may be smart enough to see is what you would have wanted had you known.


-Garrison Keillor

There is some truth to the above quote.   :yes:


Personally? I'd hold for now. Get through the school year then try an updose once school is out of session. Clinically you have the green light therefore the decision is one of does it fit your life right now, and how much more would your family stand to gain to increasing over status quo? The data on OIT as a 'cure' is not holding up. Doesn't mean tolerance amount won't go up over time but one could argue you've got a good balance at the moment. You have the rare gift of choosing your moment to updose on your own terms.

Adding another cracker in the short term isn't going to change much for us.  It is great being given a say on the updosing and it is also a really good thing to have an allergist keep me within safety limits.  Before getting the second opinion, I knew I was pushing things further than I should - 
:paddle: for me.

Since we are technically not in an OIT program, and the standard care is generally avoid if allergic, I have to consider that if we push too hard and dd were to have a significant rxn, it might give the allergist little choice but to advise avoidance again.

I know hope can be a dangerous thing with allergies, but I am hopeful with how well dd is doing.
It will be really interesting to see how they test whether, at some point, dd is truly and fully tolerant.



CM, thank you for your input also.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on October 20, 2013, 10:13:57 PM
We've kind of shifted gears in our thinking re: baked egg at this point, Grey-- we used to think about all that COULD change with "tolerance" (however one defines that), and think about how to push dosing up into that range so that we could "get there" someday...

but then we realized over a period of a few years that the changes that we already have are really amazing.

We don't worry about cross-contamination any more.


No-- let me repeat that.


We. don't. worry. about. cross. contamination. any. more.

We buy whatever pasta we like.  We allow restaurant meals that would have been UNTHINKABLE before.  We don't worry about contact with... salad dressings, potato salad, chickens, chicken FEED, animal food, hair products, art supplies, baked breads, pizza crusts...

It's amazing how much this has changed for us when we stopped and thought about it.  My dd can actually go OUT to a restaurant with her friends.  She can get a flu shot each year.  She is going to be able to have a chicken of her own.  While I know that seems like a peculiar way to "live the dream" and y'all can mock us all you like, this is like having a fairy godmother wave a wand over DD and tell her that she CAN go to the ball after all.   SHE feels like she won the darned lottery for being able to have a CHICKEN. 

Quality of life is a highly idiosyncratic measurement, basically. 

So yeah, if she isn't ever able to tolerate eggs in her diet-- SO WHAT.  I would never want to risk what we've gained.   :yes:
Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on October 20, 2013, 10:59:32 PM
PurpleCat I'm glad your dd had a good time.

DS' first homecoming dance was a letdown to him.  There were many, many students grinding, making out, etc.  He and his friends went around making fun of them "shooting" a "documentary" about them (fake camera, fake mike, real, out loud dialogue). 

This year he and his group (boys and girls) got dressed up, took pictures, ate at someone's house, went bowling, then had a bonfire.  :) And the host kid for dinner had exact schedules printed up for parents.  :rofl:  He had a much better time this year, and they didn't even go near the school.  I did worry about allergy stuff, though.
Title: Re: Living with Food Allergies, FEB 2013
Post by: Gray on October 21, 2013, 06:02:58 PM
I find myself shaking my head  :yes: to your post CM and cracking up about the chicken (which btw, I totally appreciate as I think only an allergy parent would).  We are in a similar situation, minus the chicken of course  :) .

I am ok with our situation indefinitely, but I'm also fine with whatever the allergist wants to try as long as there's not a significant risk of having to avoid again.  If she said avoid, I would, but I hope it doesn't come to that.

There are some differences:  your dd has a more severe rxn history, different allergens, my dd at least almost passed an OFC (it was written as a pass).  Also different ages of our dd's.

I'm glad I've got people to compare notes with.


Kind of unrelated, but it seems the school is being much stricter than I requested - whatever, I'd rather they do that than the opposite.  We have a great school nurse.



@PurpleCat - Congrats!



Title: Re: Living with Food Allergies, FEB 2013
Post by: jschwab on October 23, 2013, 12:16:14 PM
I'm new here but I feel like I can finally vent to people who understand. If I see another inspirational article in Living Without about someone with a serious life threatening food allergy who "chooses not to live in fear" and travels to remote regions armed with an allergy card and phrasebook and is fine, I am going to puke.
Title: Re: Living with Food Allergies, FEB 2013
Post by: GingerPye on October 23, 2013, 12:17:30 PM
LOL, oh, no kidding!
Title: Re: Living with Food Allergies, FEB 2013
Post by: twinturbo on October 23, 2013, 01:19:54 PM
I'm new here but I feel like I can finally vent to people who understand. If I see another inspirational article in Living Without about someone with a serious life threatening food allergy who "chooses not to live in fear" and travels to remote regions armed with an allergy card and phrasebook and is fine, I am going to puke.

Truth. Refreshing, unadulterated truth.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on October 23, 2013, 01:31:32 PM
Yup-- here, the testimonials are about those who travel to amazing not-too-remote locations armed with seventeen epipens, three different dictionaries, a smart phone (for Google translate) and an extra suitcase loaded with safe shelf-stable food that cost more than the entire contents of the OTHER bags.  And by "other bags" I mean those of the all of other passengers on the trans-continental flight, which one required sedation to board... only to realize that no, if I'm sedated I might not be alert enough to head off disaster at 32,000 ft over nothing but open water....


 :hiding:

Yeah, reality is a little different if you happen to have a threshold lower than the 50th percentile. 

Title: Re: Living with Food Allergies, FEB 2013
Post by: YouKnowWho on October 23, 2013, 01:55:52 PM
LOL I celebrated our trip to Helen, GA last June as being the first trip that didn't involve a reaction, vomit or a combination of the two.

We successfully navigated a driving trip to NJ (two days there, two days back) with only one child getting car sick (apparently letting him have two glasses of McD's sweet tea and a McGriddle was a bad idea) and no reactions!

Much different than a trip where DS1 christened the back of the brand new car coming back from Legoland with the start of a stomach bug.

Or the trip to St. Louis where we were told in Outback that the honey mustard dressing was safe for his egg/gluten allergy, had a rxn and then told oh but it just has three ingredients honey, mustard and mayo.  Ummm - those are not three ingredients.  DS1 spent the better part of our trip in the restroom figuring out which end to back up.  Stomach bug or allergy fall out, I don't know.
Title: Re: Living with Food Allergies, FEB 2013
Post by: SilverLining on October 24, 2013, 10:43:10 AM
Yesterday I was at school trying to find the class for a parent-teacher interview, when my dell-phone rang.  It was Ernie's girlfriend.  At her work, there is something coming up, which she is supposed to provide cupcakes for.  (Seriously....it never ends) and she knows that one of the employees is allergic to peanuts.  So she called me to see if a particular brand is safe.

My brain does not switch gears so fast, lol.  So I started asking her questions trying to place the brand. Finally, had to visualize this forum, and it all fell into place.

She had a product I would feel safe purchasing.
Title: Re: Living with Food Allergies, FEB 2013
Post by: SilverLining on October 28, 2013, 09:57:18 PM
well doesn't that just figure.

It's cold enough there is frost in the morning.  It's cold enough we've had to run our furnace.

So....why was there a wasp in my son's room?  Crawling on the costume he's working on.  And he's been working on it for weeks.  Since he's not going out, he's dressing up to hand out treats, so his costume is NOT winter weather safe.  A lot of cardboard.

I grabbed the shirt, rolled it up and took it into the backyard.  The wasp was DEFINITELY still there when I unrolled it.  But, there's very little light, and I lost sight for a second.  I don't know if it flew away, fell off the table, or hid within the shirt.  I shook it, and I had a flashlight.  But without being POSITIVE it was off the shirt, I didn't dare bring it back in.

So now, his shirt, with lots of work and cardboard is sitting in the yard until morning.

I feel bad.  Nothing I could do.  I searched until I was frozen.  Searched in the cold dark. ~)

For anyone who doesn't know me, this son is allergic to insects.  We don't know specifically which ones because he was to young to describe it when he got bit and a year later stung, and the doctor refuses to test. Unlike foods, there's no reason to not avoid getting bit and stung by all of them.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on October 29, 2013, 10:20:24 AM
Oh, Silver-- I really hope that the costume is okay.   :-[
Title: Re: Living with Food Allergies, FEB 2013
Post by: SilverLining on October 29, 2013, 11:52:05 AM
No frost, so it seems OK.

I searched and could not find the wasp.  I've had the stuff hanging in the house about 5 hours now.
Title: Re: Living with Food Allergies, FEB 2013
Post by: jschwab on October 30, 2013, 12:43:11 PM
I joined an adult allergy group that seemed good and one of the responses I got to my introduction was a suggestion that if I, perhaps, healed my leaky gut I could eat all my allergens again.  ~) I actually did follow a gut-healing type diet with my celiac husband before I got allergies so this advice make me want to throw things. What do you say to people who say stuff like that?
Title: Re: Living with Food Allergies, FEB 2013
Post by: YouKnowWho on October 30, 2013, 01:34:25 PM
Ask them why they are there if they healed their leaky guts  :evil:
Title: Re: Living with Food Allergies, FEB 2013
Post by: jschwab on October 30, 2013, 02:09:40 PM
LOL :). My husband has severe gluten intolerance, maybe celiac (he had ataxia that was worsening before he went gluten free). Even with that, we were always very respectful of the difference between a true food allergy and other issues with foods. He never, ever told anyone he had an allergy even though even a crumb would sicken him for a week. I am ecumenical about food problems and don't mind talking about everyone's issues in the same breath but, seriously, there is a difference.
Title: Re: Living with Food Allergies, FEB 2013
Post by: SilverLining on October 30, 2013, 03:34:15 PM
I have asked people to show me their medical licence.  I have also informed people that practicing medicine without a licence is against the law.  (No...of course I was not planning to have them arrested.  I just end wanted them to shut up.)

These things are not advisable if you would like to remain on friendly terms with people.
Title: Re: Living with Food Allergies, FEB 2013
Post by: jschwab on October 30, 2013, 03:43:28 PM
Yeah, I am too nice to actually bark at people. I was surprised because it was a page specifically devoted to adults with food anaphylaxis. I mean, gosh, if I had known all I had to do was down some kombucha and take some probiotics. I feel so silly now!
Title: Re: Living with Food Allergies, FEB 2013
Post by: Janelle205 on October 30, 2013, 04:32:20 PM
I've heard the leaky gut thing before as well.  I also heard from a counselor that I went to when I was having non-allergy related anxiety issues that my food allergies were caused by a disconnect between my left brain and my right brain, and if I reconnected them, I could be allergy free.

Didn't go back to that counselor.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on October 30, 2013, 05:00:27 PM
Sounds like someone needed to reconnect at least ONE part of the brain, anyway...

 :dunce:
Title: Re: Living with Food Allergies, FEB 2013
Post by: jschwab on October 30, 2013, 10:20:07 PM
I've heard the leaky gut thing before as well.  I also heard from a counselor that I went to when I was having non-allergy related anxiety issues that my food allergies were caused by a disconnect between my left brain and my right brain, and if I reconnected them, I could be allergy free.

Didn't go back to that counselor.

Wow. I am a pretty open person to alternative healing strategies but, oh, wow. I'm sorry that happened to you.
Title: Re: Living with Food Allergies, FEB 2013
Post by: SilverLining on October 31, 2013, 07:37:51 AM
I don't know where else to post this, so it's going here.

Earlier this week, I. Was flipping through stations and on one of the news stations they had some health guru type telling people to it chocolate with peanuts and nuts because they are healthy.  I wanted to pay closer attention but got interrupted.  I'm not positive, but I think it was CP24.

Then, this morning, on CP24 there's a reporter at EMS headquarters where police and other EMS employees are giving safety rules (e.g. have kids eat before T&T so they don't eat the candy without mom checking it; make sure drivers can see them; etc.). But one woman talked about giving out peanut-free treats, and showed some, showing the PF symbol.

Anyway, found it interesting.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on October 31, 2013, 01:21:08 PM
This is a classic difference-of-perspective moment.

DD has been getting CRAZY amounts of mail from top-tier colleges. 

So a postcard comes on Monday--


Quote

Every day is a rolling Smorgasbord



{blink-blink}

this thing... I do not think it means... what YOU think it means... at least not to THIS prospective student.

LOL.  :rofl:

I'm pretty sure that the intention was "Wow.... soooooo coooooooool... how FUN!"

But what my DD experienced was more like:

https://www.youtube.com/watch?v=vfthzU3V4zo


Right.  Well, that's okay, honey-- they offer no merit aid and want 50K a year.   ;)

Title: Re: Living with Food Allergies, FEB 2013
Post by: twinturbo on October 31, 2013, 02:48:58 PM
Verrry interesting phone call I finished with my insurance company. My visit to the allergist had been flagged as a possible 3rd party liability because it was filed under allergy. I was asked point blank if someone gave me something that caused an allergic reaction. I may take a risk to call back sometime to inquire if they would support our directives to school to perform strict avoidance.
Title: Re: Living with Food Allergies, FEB 2013
Post by: SilverLining on October 31, 2013, 03:56:07 PM
WOW!!

TT, was this appointment specifically due to a reaction?

As for the school....if the insurance deemed a charge third party because a reaction was caused and avoidable, would the insurance company fight them for the money, or would you have to? (I don't know how your insurance carriers work.)
Title: Re: Living with Food Allergies, FEB 2013
Post by: twinturbo on October 31, 2013, 04:29:22 PM
The insurance company only knew it was for allergy, not what type of appointment. I explained it was for establishment purposes. The line of questioning was to see if there was some other entity that would responsible like work related or medical facility giving me the wrong med. They definitely were looking into it to see if someone else was responsible for it. I've never had this happen for any of the family's appointments before.
Title: Re: Living with Food Allergies, FEB 2013
Post by: SilverLining on October 31, 2013, 07:35:30 PM
Well, if insurance companies start sue ing schools for causing medical expenses through birthday party food, maybe principals will finally grow some kahuna's and say NO FOOD.
Title: Re: Living with Food Allergies, FEB 2013
Post by: twinturbo on October 31, 2013, 11:56:06 PM
I keep DS1 home today-not hard he's sick. He stays behind DH in doorway to not get near candy bags. He eats his safe candy not mixed in with other candy. Big ugly hive pops up during bath time. 1.5 hours since Benadryl and counting. I try not to despise Halloween but it's getting harder every year.
Title: Re: Living with Food Allergies, FEB 2013
Post by: GoingNuts on November 01, 2013, 07:01:14 AM
Could be viral, TT, but certainly given the timing it's suspicious.

DS has an almond challenge scheduled for 12/16 at Mr. Sinai.  I'll create a separate thread when it gets closer.
Title: Re: Living with Food Allergies, FEB 2013
Post by: GoingNuts on November 01, 2013, 09:43:46 AM
Just overheard while on line @ JFK's Jet blue terminal - a father talking to his son while picking  out an inflight snack:  "be careful, a lot of those chips contain PN oil".

And then at checkout, "daddy look!  They have Sun Cups!"

And bless Jet Blues heArt, they do.  :heart:
Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on November 01, 2013, 12:11:38 PM
GN that is so cool.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on November 02, 2013, 05:23:56 PM
Man, when you carefully check the Amazon reviews for a fun-looking new cookbook and read reviews that glowingly describe "vegetarian-friendly" and "food allergy aware" about a product...


only to find out that not only are half of the recipes in the cookbook GLUTEN-FREE!! but that all but a tiny handful use eggs in large quantities, well over 25% of them include nuts as a key ingredient... and that of the 100 recipes, you can probably use exactly FIVE of them without major modifications.


Blergh.   :P


So.

Allergy-friendly... this word... I do not think it means... what you think it means.

Now trying to figure out who would like a mostly-vegetarian cookbook that features eggs, dairy, and treenuts in most recipes.  {sigh}  (Actually, I already know.  I just don't have a current street address. :heart:)
Title: Re: Living with Food Allergies, FEB 2013
Post by: jschwab on November 02, 2013, 06:15:05 PM
That is so frustrating, CMDeux! You would think it would leave out in most of the recipes the 8 major allergens or have some built in modifications. I think Living Without does the best at having a mix of things to accommodate different people. Usually our hangup is that we are grain-free (for complicated reasons not necessarily all having to do with food issues) so allergy recipes which mostly contain rice or rice flour (which gives me a rash) are a no. And it's hard to find substitutes with the consistency of rice a lot of the time.

I should actually post some of our home recipes. Hubby is a devoted home cook and he has developed a lot of unique and inventive recipes over the years substituting nearly every ingredient with something else that serves the same function. He even makes a homemade grain free English muffin that is convincing and grainfree sourdough bread that is also very convincing. Those are all based on the magic of eggs, though :(. My greatest fear is that my next allergy will be eggs. I eat at least two per day, often many more.
Title: Re: Living with Food Allergies, FEB 2013
Post by: jschwab on November 02, 2013, 09:37:43 PM
Hey, I had a normal day. It's been a month since my out of the blue major almond reaction. Every day since has been some combination of cleaning, stressing, researching foods, washing all my clothes and then figuring out that my laundry soap is covering me head to toe in rash and washing everything again, washing walls because there is almond oil on every surface I touch (from my lotion), reconfiguring the pantry and endless small food contamination reactions. But today I had a normal Saturday and my kitchen is finally under control and I have a plan for managing everything. I have meals planned for eight days and I can sit back and relax.

I am so relieved to be done.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on November 02, 2013, 09:55:11 PM
 :coolbeans:  That is SUCH a good feeling.  I'm really happy that you had that today. 
Title: Re: Living with Food Allergies, FEB 2013
Post by: twinturbo on November 03, 2013, 10:06:52 AM
I was in the ER last night, got bored so I pestered nurses with EMS questions. This time it was pediatric ECMO. In my state only one hospital in the largest city has it so I asked why and what if you need it in remote areas?

She said the main hindrance is the requirement of a highly specialized pulmonologist to run it. That led to air ambulances and her experience working them. The context was transporting patients. She said the ECMO is so large transporting it would require a cargo plane, something beyond an air ambulance at any rate.

According to her two air ambulance companies are reputable: REACH and Lifeflight. Later on I found they had recently merged. When asked about regulation she stated both are highly regulated by the FAA and very professionally managed. In the Pac NW there is excellent coverage between REACH and Lifeflight. One membership is covered by both in reciprocity, now they're one company so I can't see how that's not true.

I'm not sure how the membership works but according to nurse there's a REACH office in town. Assuming I'm not croaking I plan to visit them in person to get nitty gritty on how exactly they are enabled once membership is purchased, how they interact with EMS, and what kind of equipment they run. I want to know do they have helicopters for extractions as well as planes. You can't land a plane on a boat or remote area without a landing strip, KWIM?

I already asked paramedic contact last year about air transport from sea vessels. It was definitely a grey area but EMS can call in for air transport. The key there is getting that person to recognize the need to call it in. That's what I going to inquire with Lifeflight/REACH. I may be able to tap into an emergency dispatch manager to cross-reference all of this.

I think there was something else... forgetting at the moment.

Now I remember. I want to ask about medical transport to either destination or home if a flight is rerouted and grounded due to in flight medical emergency on a commercial carrier with a membership. The idea to not be stranded in some random city with no safe food sourcing.
Title: Re: Living with Food Allergies, FEB 2013
Post by: GoingNuts on November 03, 2013, 10:51:46 AM
Why were you in the ER?
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on November 04, 2013, 10:42:25 AM
Quote
I want to know do they have helicopters for extractions as well as planes.

YES.  They serve {local hospital} and due to where our house is, we hear both LifeFlight and Coast Guard helicopters land.

Marine vessel extractions are often handled by USCG here-- though what medical interventions are possible there, I am not sure.  Must be some though, because obviously if they are rescuing someone with a swimmer and a basket, there's likely to be injury/hypothermia involved.  USCG copters are FAST, too.  They can be in our heliport here in forty minutes from a shipboard rescue, is my understanding.

Does that help?

Title: Re: Living with Food Allergies, FEB 2013
Post by: twinturbo on November 04, 2013, 10:59:13 AM
Not with private. Two different sectors.

But if we do want hard numbers and facts on USCG and admiralty regulation--that I can get endless details on. I'm not sure that would help because the point of private is to have the ability to call upon it like a taxi.

On the other hand... would it help to know exactly when public rescue gets called? I can get that EXACTLY but it's going to cost me a three hour "chat". I can tell you having an overwhelming amount of military vessels vs. private vessels that I'm not sure that one is as advertised no matter what I'm told on how it's 'supposed' to work. Hence, my interest in private.

Has to do with the admiralty laws re: captain of private vessel and who controls communication. I was going to go through REACH first then I can follow up with father dearest, then paramedic former military contact who owes me one.

I'm trying to find a way to get us to Mt. Ranier or San Juan in the next few years, can you tell?  :rofl:
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on November 04, 2013, 11:08:55 AM
Gotcha.

 :yes:
Title: Re: Living with Food Allergies, FEB 2013
Post by: TabiCat on November 04, 2013, 05:29:34 PM
I knew it would come but it still hits hard. DS has always been ultra compliant on food. "The rule is h rule". Recently though, he is starting to question to want to push the envelope. The concept of may contains bothers him. And we descovered recently that he Remembers "he was allergic to egg but not now" . This worries me he might try and test himself. I still have no worries that he might try peanuts or peanut butter YET.
Title: Re: Living with Food Allergies, FEB 2013
Post by: jschwab on November 05, 2013, 11:23:47 PM
All of my other funny food reactions since the almond reactions seem to have turned out to be cross-contamination and not the actual food. But the lanolin/wool issue is sticking as a real thing, meaning half of the clothes I love for chilly weather are no longer in play :(.
Title: Re: Living with Food Allergies, FEB 2013
Post by: notashrimpwimp on November 06, 2013, 03:23:04 AM
Recent question I've been pondering: would the inability to breathe through your nose during a reaction signify anything? No running nose or sniffling, just no air...
Title: Re: Living with Food Allergies, FEB 2013
Post by: SilverLining on November 06, 2013, 06:35:42 AM
In can indicate the nasal passage is swollen.  (Is that the proper term?)

I've had that happen many years ago.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on November 06, 2013, 09:50:34 AM
All of my other funny food reactions since the almond reactions seem to have turned out to be cross-contamination and not the actual food. But the lanolin/wool issue is sticking as a real thing, meaning half of the clothes I love for chilly weather are no longer in play :(.

I feel your pain.  So much.  :(  I love wool.  I just can't have it against my skin for any length of time.  I knit.  This is a tragic combination.   :'(
Title: Re: Living with Food Allergies, FEB 2013
Post by: jschwab on November 06, 2013, 11:13:15 AM
All of my other funny food reactions since the almond reactions seem to have turned out to be cross-contamination and not the actual food. But the lanolin/wool issue is sticking as a real thing, meaning half of the clothes I love for chilly weather are no longer in play :(.

I feel your pain.  So much.  :(  I love wool.  I just can't have it against my skin for any length of time.  I knit.  This is a tragic combination.   :'(

We're outside a lot and I have a lot of Smartwool socks, long underwear, etc. :(  Knitting without wool stinks! Incidentally, I also lost my Vitamin D supplements. I don't know how I am going to get that D this winter. I should have know it would happen since I've developed all the same stuff as my mom and she can't deal with wool. We have the same body with mine on a 30 year delay.
Title: Re: Living with Food Allergies, FEB 2013
Post by: jschwab on November 06, 2013, 11:14:59 AM
OMG, the kids are in online school and the second grader has a lesson right now with a movie on different allergies, including a lot of information on people with food allergies. It's so inclusive, it makes me want to cry. They are glued to the screen.
Title: Re: Living with Food Allergies, FEB 2013
Post by: notashrimpwimp on November 06, 2013, 02:37:06 PM
SilverLining, would that concern you? Would that count as respiratory involvement?

It would be lovely to not worry about being around people who eat. Imagine the adventures! :)
Title: Re: Living with Food Allergies, FEB 2013
Post by: hezzier on November 06, 2013, 07:20:11 PM
I love DS's teacher.  Went to the classroom the other day and she has 2 signs (one on the window and one on the door frame) that says no food allowed in her classroom!!  I asked her if it was new...she said no, but I hadn't noticed it before.  Now, I have to say, it's not quite true because she still gives out candy to the kids and will allow birthday treats if they have been pre-arranged, but cannot contain any nuts.

She did this all on her own. 
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on November 07, 2013, 11:54:38 AM
Y'all remember my hissy fit re: field trips years ago?

You know-- the hissy fit that involved legal nationally?

And resulted in fully-accessible field trips?

Quote from:  official Baskin-Robbins Field trip
THERE WILL BE NUTS in the Baskin Robbins, so be careful!

Quote from: Culinary School Tour and Demo
- This trip is food focused and may not be a good choice for students with allergies. We will be touring active kitchens and may be working with food as well.


 ~)


Just goes to show you that some people apparently can't really "get" what inclusion means.  Because given the descriptions of each activity, the disclaimers above SHOULD NOT have been necessary.

Their ONLY legitimate purpose is exclusion.   "by the way, ________ not welcome here."  :-[

Put this in ANY other context, and it screams "illegal" in addition to 'squicky as all hell.'

"IMAX films may not be a good idea for those with seizure disorders."

"those with orthopedic challenges should be aware that the hike covers steep terrain and is probably not suitable for them."

Seriously-- not five years ago, I took these people into a headlock with the assistance of their corporate legal team and OCR DC.  My daughter did it LAST year over something ELSE.

Clearly some educators are just not that bright.  (No offense intended.)

I'm just.... SO... tired.

Title: Re: Living with Food Allergies, FEB 2013
Post by: jschwab on November 07, 2013, 02:10:53 PM
CMdeux, are those required field trips? I'm curious about the law because I have always viewed it as very squidgy when it comes to school activities and disabilities. Are schools required to accommodate every child at every activity, because they certainly don't. I would push for more inclusion of kids with food allergies even though my kids are not affected if I knew which legal leg to stand on, so the families themselves don't always have to be the bad guys. I actually had an anaphylactic reaction at a school event one based on bad catering information.
Title: Re: Living with Food Allergies, FEB 2013
Post by: twinturbo on November 07, 2013, 02:38:33 PM
That's all linked/covered in Schools subforum. It is regulated through ADAA, Civil Rights, etc., as is any qualifying disability that meets legal and medical definition.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on November 07, 2013, 02:47:16 PM
jschwab, you definitely get where this edges into grey territory with them-- all field trips are ALL covered as "voluntary" activities, but to be "official" activities, they also HAVE to be sanctioned (and that is the term they use) and also have to be "educational" somehow...

which means that yeah-- TECHNICALLY, everything is supposed to be accessible to ALL.

Which clearly isn't the case, nor should it be, in all probability, given that a virtual school is going to be drawing disproportionally from populations which are homebound for medical reasons or those seeking a non-B&M schooling setting for reasons related to disabling conditions.

So should ALL field trips be open to ALL students and also be accessible to EVERY family in the state?

Probably not, kwim?

Where I have a big, big, BIG problem with this is that it treats FA's very differently than any other disability-- and I'm almost wondering if it isn't retaliatory.  I refused to do marketing for them this year.

I don't think for one instant that this isn't about my DD.  Not for an instant.  Because the entire policy w.r.t. food on field trips in this state is about her.  Seriously-- that carefully crafted disclaimer/notice about short/long field trips and food/no food is IN MY CHILD'S 504 plan.

So to do an end-run around her privacy like this?  Oh yeah-- I'm PISSED.  BIG-TIME.


The ONLY other mention of disability in any way/shape/form (in about two dozen statewide field trips that I've looked at this morning) in my state was w.r.t. a park field trip which stated:

"XXXXXXX park is wheelchair accessible."

Seems reasonable.

Also seems reasonable to me that people MANAGING their own diabetes, RA, FA's, or anything else are probably the best judges of what is or is not a good idea.  You know, without the school pointing out that they aren't welcome.  I'm also really angry because it's so darned presumptuous to assume that just because DD couldn't possibly safely attend either trip-- that NO kids with nut/other FA could.  Sheesh. 


Substitute racial info into those statements I posted and see how THAT one looks. 

Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on November 07, 2013, 03:25:58 PM
Jackpot:

Section 504 and Students with Disabilities.

Quote
In order to ensure that students with disabilities have equal access to the school program, Section 504 requires that schools provide accommodations. So, if a student with a disability needed an accommodation or related aids and services to participate in the field trip, those services must be provided.
For example, in Quaker Valley (PA) Sch. Dist., 39 IDELR 235 (OCR 1986), a girl with a neurodegenerative disorder that affected her motor, sensory, perceptual, and language functioning was denied the opportunity to go on field trips and participate in a swimming program. Due to “safety concerns”, the school principal had unilaterally made the decision to exclude her from six field trips with her third grade class, including a trip to a television station. She was the only student excluded from the field trips. In school the girl was provided with accommodations, such as an escort to assist her when walking and holding her hand. But no consideration was given to providing similar accommodations on the field trips or in the swimming program. The Office for Civil Rights (OCR) determined that the “safety” considerations were not justified and that the girl should have been provided with accommodations to ensure her participation in the field trips and the swimming program. Additionally, OCR determined the school district violated Section 504 because it did not notify the girl’s parents of the upcoming field trips, while the other children’s’ parents were notified.
On the other hand, OCR has found that there are times when schools, after individual consideration, may exclude a student from a field trip if the student’s participation presents an unacceptable risk to the student’s health or safety. But the school must be able to justify that determination. In North Hunterdon (MD) Pub. Sch. Sys., 25 IDELR 165 (OCR 1996), OCR determined that the school district was justified in excluding a student from a field trip when the student had several seizures on the same day as the field trip.


In the instance of food allergy, it's VERY unlikely that a determination re: safety/advisability CAN be made without inputs from the child's parents regarding risk and current status.

Title: Re: Living with Food Allergies, FEB 2013
Post by: hezzier on November 07, 2013, 09:19:15 PM
I love DS's teacher.  Went to the classroom the other day and she has 2 signs (one on the window and one on the door frame) that says no food allowed in her classroom!!  I asked her if it was new...she said no, but I hadn't noticed it before.  Now, I have to say, it's not quite true because she still gives out candy to the kids and will allow birthday treats if they have been pre-arranged, but cannot contain any nuts.

She did this all on her own.

Ok, I reread the sign today, says "Allergy Alert:  No food in the classroom unless approved by Mrs. teacher, Mrs. principal or Mrs. nurse"
Title: Re: Living with Food Allergies, FEB 2013
Post by: twinturbo on November 07, 2013, 09:50:49 PM
So I've had a banner freakin' day here yet I have to say there was some traction in clarification. I have two updates on nitty gritty details re:air ambulance memberships and MedicAlert's GPS. For whosoever wants to know how does it work--exactly.

(P.S. I ripped eTrak a new one)

Air ambulances like REACH, Lifeflight, Air Med, etc. have memberships available for purchase. The membership covers a family for one year. Anything above what insurance pays them they eat in cost if you are a member. What it does not do is allow you to call upon them directly. The membership also functions on a geographic territorial network with limited reciprocity with other air ambulance services. There are a mix of helicopters and planes but each craft and crew is stationed at different locations. They respond ONLY to EMS dispatch or fire/rescue, which means you call in to 911 and would need to impress very clearly to the dispatcher that you have a pediatric patient experiencing anaphylaxis, you've administered epinephrine, the clock is ticking on that effectiveness therefore you can't wait 30-45 minutes for a truck to show up in the boonies. You've got a REACH or Lifeflight membership, you've talked to them you know they can get there in 10 minutes and that they are equipped to handle pediatric patients. This is the advice one of the crew and the sales team gave me, the sales gal I talked to has a child with peanut anaphylaxis so she definitely "got" the situation having been there first hand.

Here's your problem with location if you're out in the middle of nowhere--your location. I got the MedicAlert GPS Essentials tracking device "powered by eTrak" which means they are responsible for the one-button 'panic' device itself and the tracking system/software. Where MedicAlert comes in is that they are tied in to specific devices keyed to notify them if the 'panic' mode is enabled with a 2-second push. A text message notifies pre-set parties that the panic signal has been activated. Then MedicAlert tries to call those registered parties. If the parties cannot be reached EMS is called on the location of the GPS for a wellcheck.

So here's where the GPS is an epic fail: any tree, or valley, or nearly any obstruction inhibits the signal from communicating with the satellite. Say you want to go to a forest. GPS loses you and starts to track you by slinging off of cell towers (in eTrak's case it's Verizon). Your location becomes wherever that Verizon cell tower is. And once too far for the range of a Verizon cell tower your little eTrak has not been programmed smartly enough to know to not keep jamming out a perpetual fast-paced battery draining signal in order to fulfill its mission to update. Say, can't I just find the wifi in a local federal forest thingie out in the woods to sit and update my GPS because it can use wifi to update? ONLY IF that wifi location is preprogrammed in to be recognized as a location in the receiving database (per DH former IT computer engineer).

What does this mean? A trip to the woods with a GPS panic button and an air ambulance sounds like an awesome tactical extraction on paper. What it yields is a GPS that last locates on a Verizon tower miles away from destination while poor little GPS freaks out trying to update and drains itself dry. The first set of trees or valleys obscures the signal forcing the unit to rely on cellular or wifi. Trying to force an update via wifi at destination will only work if destination is already a known area programmed into territory. Your air ambulance membership still puts you at the mercy of emergency dispatch, you'd have to convince them to radio over to Lifeflight. This is all assuming you're in the area of your membership coverage.

Both the air ambulance and GPS cell ID territory network would have to be consulted via map in order to understand your coverage. Expert knowledge of how the GPS will function, or more importantly not function, and possibly how emergency dispatch works would basic requirements to understand the limitations.

There was one new thing the air med people turned me on to and that is fire med memberships available through the city. I'm going to follow up with the REACH/Lifeflight crew in person some time. They're going to let me check out the craft and pester them in person, pretty cool of them. I'll look into the fire med and bug local law enforcement and/or FD for that membership. It's supposed to be easy for us to access so I'd be surprised if it's more than looking it up on the internet, but still I'm a stickler for details. Not on tonight's agenda though.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on November 07, 2013, 10:06:15 PM
Cellular service out in the western coastal states, btw--



very spotty.  VERY.  Particularly once away from the coastal-valley, I-5 corridor.

Just driving to the coast, there is a 20-30 MILE wide dead spot in my coverage with Verizon, and I mostly have no coverage while on the beach, either. 

Also worthy of note-- at least in the PNW, Verizon coverage tends to be dramatically better than AT&T outside of urban areas, and either one is several orders of magnitude better than any OTHER cellular carrier.    There's a reason why relatively few people out here had iPhones until recently. ;)  We're not philistines-- just pragmatic. 

Great research on that subject, TT.  I guess that I sort of knew most of that instinctively having grown up out here-- that LifeFlight wasn't 'on-call' to its members, so to speak-- but it never occurred to me that it MIGHT be, if that makes sense.  Sorry; I probably could have saved you some time there if I'd know that was what you were thinking about.  :)

I've had paws in a REACH copter before-- nicely equipped, very professional staff. 

In outlying areas of the PNW, also be aware that EMS may be "volunteer" rather than fulltime professionals.  Now, that isn't necessarily a BAD thing.  For example, we have a nuclear engineering prof who is a County deputy sheriff here- auxiliary.  He's a great guy, and just as well-trained as the paid officers, with nearly identical duties/powers. 
Title: Re: Living with Food Allergies, FEB 2013
Post by: jschwab on November 07, 2013, 10:27:35 PM
jschwab, you definitely get where this edges into grey territory with them-- all field trips are ALL covered as "voluntary" activities, but to be "official" activities, they also HAVE to be sanctioned (and that is the term they use) and also have to be "educational" somehow...

which means that yeah-- TECHNICALLY, everything is supposed to be accessible to ALL.

Which clearly isn't the case, nor should it be, in all probability, given that a virtual school is going to be drawing disproportionally from populations which are homebound for medical reasons or those seeking a non-B&M schooling setting for reasons related to disabling conditions.

So should ALL field trips be open to ALL students and also be accessible to EVERY family in the state?

Probably not, kwim?

Where I have a big, big, BIG problem with this is that it treats FA's very differently than any other disability-- and I'm almost wondering if it isn't retaliatory.  I refused to do marketing for them this year.

I don't think for one instant that this isn't about my DD.  Not for an instant.  Because the entire policy w.r.t. food on field trips in this state is about her.  Seriously-- that carefully crafted disclaimer/notice about short/long field trips and food/no food is IN MY CHILD'S 504 plan.

So to do an end-run around her privacy like this?  Oh yeah-- I'm PISSED.  BIG-TIME.


The ONLY other mention of disability in any way/shape/form (in about two dozen statewide field trips that I've looked at this morning) in my state was w.r.t. a park field trip which stated:

"XXXXXXX park is wheelchair accessible."

Seems reasonable.

Also seems reasonable to me that people MANAGING their own diabetes, RA, FA's, or anything else are probably the best judges of what is or is not a good idea.  You know, without the school pointing out that they aren't welcome.  I'm also really angry because it's so darned presumptuous to assume that just because DD couldn't possibly safely attend either trip-- that NO kids with nut/other FA could.  Sheesh. 


Substitute racial info into those statements I posted and see how THAT one looks.

OK, now I get your point completely. Yes, that is ridiculous to use exclusionary language from the get-go, just throwing up a wall and making kids feel unwelcome for no reason, although they are probably thinking they are being helpful. In PA, they usually ask families to volunteer the information if they need accommodation privately to the organizer and then they make a blanket stipulation for that trip or activity that no peanuts/shellfish/tree nuts/dairy, etc. should be brought by other families. I think some types of activities/offices have a blanket peanut ban altogether. I was just curious because I know some of the staff who organize the field trips and I could probably slip in some personal advocacy to them on how better to handle things for allergy families, if needed Everyone needs allies, you know? That reaction I had at a school event I was so mortified and it was really bad (the potato salad was made with sour cream instead of just mayonnaise) and I just sucked it up and hid. I was too afraid to use my Epi-Pen. Imagine being a kid and trying to be cool at your first school event!
Title: Re: Living with Food Allergies, FEB 2013
Post by: jschwab on November 07, 2013, 10:31:41 PM
Jackpot:

Section 504 and Students with Disabilities.

Quote

In the instance of food allergy, it's VERY unlikely that a determination re: safety/advisability CAN be made without inputs from the child's parents regarding risk and current status.


Gotcha.
Title: Re: Living with Food Allergies, FEB 2013
Post by: jschwab on November 07, 2013, 10:45:06 PM
So I've had a banner freakin' day here yet I have to say there was some traction in clarification. I have two updates on nitty gritty details re:air ambulance memberships and MedicAlert's GPS. For whosoever wants to know how does it work--exactly.

(P.S. I ripped eTrak a new one)

Air ambulances like REACH, Lifeflight, Air Med, etc. have memberships available for purchase. The membership covers a family for one year. Anything above what insurance pays them they eat in cost if you are a member. What it does not do is allow you to call upon them directly. The membership also functions on a geographic territorial network with limited reciprocity with other air ambulance services. There are a mix of helicopters and planes but each craft and crew is stationed at different locations. They respond ONLY to EMS dispatch or fire/rescue, which means you call in to 911 and would need to impress very clearly to the dispatcher that you have a pediatric patient experiencing anaphylaxis, you've administered epinephrine, the clock is ticking on that effectiveness therefore you can't wait 30-45 minutes for a truck to show up in the boonies. You've got a REACH or Lifeflight membership, you've talked to them you know they can get there in 10 minutes and that they are equipped to handle pediatric patients. This is the advice one of the crew and the sales team gave me, the sales gal I talked to has a child with peanut anaphylaxis so she definitely "got" the situation having been there first hand.

Here's your problem with location if you're out in the middle of nowhere--your location. I got the MedicAlert GPS Essentials tracking device "powered by eTrak" which means they are responsible for the one-button 'panic' device itself and the tracking system/software. Where MedicAlert comes in is that they are tied in to specific devices keyed to notify them if the 'panic' mode is enabled with a 2-second push. A text message notifies pre-set parties that the panic signal has been activated. Then MedicAlert tries to call those registered parties. If the parties cannot be reached EMS is called on the location of the GPS for a wellcheck.

So here's where the GPS is an epic fail: any tree, or valley, or nearly any obstruction inhibits the signal from communicating with the satellite. Say you want to go to a forest. GPS loses you and starts to track you by slinging off of cell towers (in eTrak's case it's Verizon). Your location becomes wherever that Verizon cell tower is. And once too far for the range of a Verizon cell tower your little eTrak has not been programmed smartly enough to know to not keep jamming out a perpetual fast-paced battery draining signal in order to fulfill its mission to update. Say, can't I just find the wifi in a local federal forest thingie out in the woods to sit and update my GPS because it can use wifi to update? ONLY IF that wifi location is preprogrammed in to be recognized as a location in the receiving database (per DH former IT computer engineer).

What does this mean? A trip to the woods with a GPS panic button and an air ambulance sounds like an awesome tactical extraction on paper. What it yields is a GPS that last locates on a Verizon tower miles away from destination while poor little GPS freaks out trying to update and drains itself dry. The first set of trees or valleys obscures the signal forcing the unit to rely on cellular or wifi. Trying to force an update via wifi at destination will only work if destination is already a known area programmed into territory. Your air ambulance membership still puts you at the mercy of emergency dispatch, you'd have to convince them to radio over to Lifeflight. This is all assuming you're in the area of your membership coverage.

Both the air ambulance and GPS cell ID territory network would have to be consulted via map in order to understand your coverage. Expert knowledge of how the GPS will function, or more importantly not function, and possibly how emergency dispatch works would basic requirements to understand the limitations.

There was one new thing the air med people turned me on to and that is fire med memberships available through the city. I'm going to follow up with the REACH/Lifeflight crew in person some time. They're going to let me check out the craft and pester them in person, pretty cool of them. I'll look into the fire med and bug local law enforcement and/or FD for that membership. It's supposed to be easy for us to access so I'd be surprised if it's more than looking it up on the internet, but still I'm a stickler for details. Not on tonight's agenda though.

What hunters and hikers do is use those GPS emergency services (never cell, obviously - you might as well throw it in the campfire) but ALWAYS with a detailed plan left behind with someone contactable It may not sound fun to follow a very detailed plan on your trip for where you will be but if the emergency service calls an emergency contact first and they can give details from your plan AND you are prepared to send up flares in the event of emergency, it might be worth the effort to get you where you want to be. Also, I know that in some areas in the mountains, other signaling devices are available (avalanche transceiver). Maybe they will scan for those on Mount Rainier? 
Title: Re: Living with Food Allergies, FEB 2013
Post by: twinturbo on November 07, 2013, 11:04:04 PM
Right, this IS a GPS device that when GPS fails due to an obstruction such as a tree it then resorts to cell ID. Per eTrak the GPS device and service provider this is a GPS satellite issue in signal obstruction of any GPS device. Garmin, etc., any brand same problem: signal obstruction between device and satellite.

The plan for a lost party in the woods or injured would work for a lost or injured party--not an anaphylaxing one. It does nothing to address the issues of immediacy and precise location as I related to said devices and services. Hope that clears it up.

And I want to add for this population with high membership and trust with MedicAlert specifically is that they are responsive to the issues with eTrak (who they contract for GPS device and service) but they are not physically familiar with the device or its software interface. The marketing material does not convey the limitations of the tracker per previous post, so the idea of (and I quote) never having to worry where a loved one is again does not hold up technically. There's no way they can deliver on that one.

In outlying areas of the PNW, also be aware that EMS may be "volunteer" rather than fulltime professionals.  Now, that isn't necessarily a BAD thing.  For example, we have a nuclear engineering prof who is a County deputy sheriff here- auxiliary.  He's a great guy, and just as well-trained as the paid officers, with nearly identical duties/powers.

Sort of. That's actually close to part of my background so I know those programs first hand. My understanding is volunteer FF actually have more in common with paid than volunteer LE have with paid FT sworn personnel. The latter come in more variety differently purposed and some LE agencies will simply not allow them at least not in the capacity of sworn personnel.

I didn't go with the notion that air ambulances are on call but I did want to feel out how far the social engineering goes. I think there's some room there for me to explore. Professionally speaking it's in my interest to follow up if I'm to springboard off of my LE background into GIS at some point. I already know the local PD structure, personnel, county, dispatch. At some point I'm going to circle back to dispatch if I can.
Title: Re: Living with Food Allergies, FEB 2013
Post by: jschwab on November 07, 2013, 11:20:53 PM
Right, this IS a GPS device that when GPS fails due to an obstruction such as a tree it then resorts to cell ID. Per eTrak the GPS device and service provider this is a GPS satellite issue in signal obstruction of any GPS device. Garmin, etc., any brand same problem: signal obstruction between device and satellite.

The plan for a lost party in the woods or injured would work for a lost or injured party--not an anaphylaxing one. It does nothing to address the issues of immediacy and precise location as I related to said devices and services. Hope that clears it up.

I completely get that. And it's not completely true that it's a situation unique to anaphylaxis. If you were a hiker having a serious heart attack or you were bleeding out from a bear mauling, it's the same situation. Flares and hope and a detailed plan + GPS with a good emergency contact who is available are your best friends, and you won't really have any others. I'm not trying to throw you a curveball or throw a damper on your plans, but that is just an inherent part of being in the woods and other remote areas. There are not many ways of even minimizing the risk in case of a catastrophe, let alone zeroing it out.
Title: Re: Living with Food Allergies, FEB 2013
Post by: twinturbo on November 07, 2013, 11:28:22 PM
Yes, we are agreeing. Both then and now. The message I hope I'm conveying is that I mapped out what really happens with the devices and services as opposed to the marketing promises. Reality and brochure don't match up. Caveat emptor. FWIW, I will plainly say I 100% believe there are accidents that need attention and that they happen to hunters. But with respect to the main focus of the FA board I've admittedly tightened the scope to FA.

For what the devices and services truly are they offer some great advantages as long as one understands their limits. I bought a REACH membership and I've been using the GPS Essentials device with general satisfaction. It took a while to sort out exactly what it will and will not do, and who to go for service questions. eTrak will send you to MedicAlert. MedicAlert will send you to eTrak.
Title: Re: Living with Food Allergies, FEB 2013
Post by: jschwab on November 07, 2013, 11:41:02 PM
Yes, we are agreeing. Both then and now. The message I hope I'm conveying is that I mapped out what really happens with the devices and services as opposed to the marketing promises. Reality and brochure don't map up. Caveat emptor.

Ah, ok, I had the sense you were still looking for that elusive fail safe solution. It's tough. It's a stressor even with healthy people to walk into that unknown of "what if?". Last year my husband had a really bad kidney stone attack half mile into the AT. That was the longest half mile of my life. It was so short but with someone who can barely walk and looks like they are dying, it puts on the gray hairs. And it made me more cautious and aware of the actual risk of being even a little bit away from people who can help. I still think you should do it, though, with thorough preparation. I'll be going up in the woods soon stressed to the max about this new allergy. Can't help it, though.
Title: Re: Living with Food Allergies, FEB 2013
Post by: twinturbo on November 07, 2013, 11:52:38 PM
WRT to going in the woods use some serious tick prevention. DEET freaks my world but those **** Lone Star ticks and alpha-gal. They were historically in the SE but they've made their way WAY far north. You may know about them already (the alpha-gal) but that seems to be on the rise.

Good hunting to you. If I had more time I'd go myself. I'll hit you up with some chat about it sometime in OT.
Title: Re: Living with Food Allergies, FEB 2013
Post by: jschwab on November 08, 2013, 12:02:58 AM
WRT to going in the woods use some serious tick prevention. DEET freaks my world but those **** Lone Star ticks and alpha-gal. They were historically in the SE but they've made their way WAY far north. You may know about them already (the alpha-gal) but that seems to be on the rise.

Good hunting to you. If I had more time I'd go myself. I'll hit you up with some chat about it sometime in OT.

Yes, contact me - we're new to hunting but it's become a family lifestyle. One of those non-food centric hobbies we've picked up (even though it's technically about food lol). You're not supposed to bring food with you in the field, so it's ideal  :). I had Lyme last year but I don't think Lone Star and Alpha gal are up here yet, but I will check into it. We have heard good things about soaking clothes in permethrin. Which is the one that makes you allergic to meat? If I get that one, I'm seriously doomed because that's about all we have left.
Title: Re: Living with Food Allergies, FEB 2013
Post by: twinturbo on November 08, 2013, 12:08:29 AM
Deer = Lyme. Lone Star = alpha-gal. Ain't it grand?
Title: Re: Living with Food Allergies, FEB 2013
Post by: jschwab on November 08, 2013, 12:12:56 AM
Deer = Lyme. Lone Star = alpha-gal. Ain't it grand?

And that is the meat one? Sigh...
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on November 08, 2013, 10:18:38 AM
Yes, it's the mammalian meat one.
Title: Re: Living with Food Allergies, FEB 2013
Post by: krasota on November 09, 2013, 10:02:21 AM
And they've identified more Borellia species than the one carried by deer/black-legged ticks.  Basically, STARI has been kind of "like lyme, but not because it wasn't a deer tick and it's not the same borellia infection" . . .  At least that was the news this summer--I think they've finally confirmed the bacteria in both non-blacklegged ticks and then subsequently in humans.  Or something.

So all the ticks are pretty much horrible nasty things.  Larval/seed ticks are less of a problem than their older selves.

Alpha-gal terrifies me. 
Title: Re: Living with Food Allergies, FEB 2013
Post by: Janelle205 on November 09, 2013, 10:45:11 AM
As someone who has had Lyme disease, I use DEET exclusively for bug purposes in the summers when I work at a camp.  I use the 100% deet, which comes in a small bottle, but that is more because the other kinds generally have some sort of scent that makes me wheeze.

I almost always wear long pants and spray mostly on the clothes.  I wear a mask when I put the spray on so that I don't inhale any of it.  And I always shower it off before bed.  When I was a counselor and went camping, I would leave the bug spray on until I was ready to go to the tent for the night, then wipe quickly with wipes, bag the wipes up and hang (bear country) and then get into the tent for the night.
Title: Re: Living with Food Allergies, FEB 2013
Post by: YouKnowWho on November 12, 2013, 07:56:59 AM
So I can admit serious transgressions here too.

We have had a good run of traveling sans reactions, until Sunday.

We went to Cracker Barrel for breakfast.  I brought DS1's cereal in, ready to order just milk for him but she pointed out the grits would be fine (DS1's fave food) and the bacon would be safe.  Well the grits would have been fine if it wasn't for that stupid blatant warning about wheat contamination.  Itchy face - benadryl on board.

Fast forward to Sunday night when I was stocking up on cookies for DS1 to have in the hotel because the GF selection is much cheaper up here.  Grabbed the sugar wafers and shortbread cookies - DS1 launched into the shortbread cookies and ate three.  Then I saw him reading ingredients.  Yup, egg.  Benadryl again.

Not sure if the dose of Benadryl earlier or the fact that they were baked, but reaction was minimal and could have probably been just waited out. 

And yes, once again he should have been epi'd and wasn't because we were traveling.  Which honestly is the stupidest reason ever. 

It does make me wonder yet again, should I try for baked egg tolerance though.
Title: Re: Living with Food Allergies, FEB 2013
Post by: krasota on November 12, 2013, 11:47:15 PM
I hear you, YKW.  I had a reaction last night that I'd have epi'd the kids for in a heartbeat.  But with myself, there's always the thought, "but what if I'm over-reacting?"
Title: Re: Living with Food Allergies, FEB 2013
Post by: YouKnowWho on November 13, 2013, 10:52:10 AM
I hear ya Krasota, I so hear you.

Ironically, prior to leaving, I got new epi pens and showed the boys the trainer.  And was once again having them practice with it.  I was also talking about that several people mentioned that while they were in fear of the shot that they were generally surprised that it didn't hurt (DS2 might want to grow up to be Dracula but DS1 is in panic in regards to needles which of course has me fearful of what he would do when he actually needs it, kwim?).  Then there is the always do as I say, not as I do aspect.  But I explained that for most people that feeling of doom disappears.  DS1 explained his is not a doom feeling but more like a monster sneaking up behind him and wrestling with him.  And Benadryl doesn't always chase the monster away.  Talk about feeling like a horrible mom then.

But one of the big reasons he didn't get epi'd over the course of Sunday is that DS1 was clear the monster wasn't in the room.  So I decided to base off his intuition, not off the action plan (ingestion = epi).   
Title: Re: Living with Food Allergies, FEB 2013
Post by: SkyScorcher on November 13, 2013, 03:29:15 PM
Oh, hey, an e-mail from University of Chicago... this should be goo--

(http://i43.tinypic.com/2s01yc9.png)

Nope.
Nope nope.
Noooope.
Title: Re: Living with Food Allergies, FEB 2013
Post by: SkyScorcher on November 13, 2013, 03:33:25 PM
Also, I don't want to be a Reedie, Mommy....

(http://i41.tinypic.com/14tm2km.jpg)
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on November 13, 2013, 03:35:18 PM
So you're saying that you lack a certain adventuresome spirit, then?   :evil: :coffee:
Title: Re: Living with Food Allergies, FEB 2013
Post by: SkyScorcher on November 13, 2013, 03:35:58 PM
Only if part of the financial aid package is a gift certificate for the local E.R.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on November 13, 2013, 03:42:11 PM
This seems appropriate here:


Sky, congratulations on making the DEAN'S LIST!  What are you going to do now?



I'm going to Disneyland!

   ;)  Maybe not the same thing.  Sentiment holds, though...

annnnnd I just realized that my DD is too young to even 'get' the "I'm going to Disneyland" line:

Title: Re: Living with Food Allergies, FEB 2013
Post by: SilverLining on November 15, 2013, 06:43:40 AM
Those commercials aren't what come to my mind.

I think of Casey Anthony.  And a web-site that used to have really hot-headed arguments.  If people continued fighting, or used inappropriate language they would be be banned temporarily.  Everyone referred to it as "going to Disneyland" as in "You need a trip to  Disneyland" or "be careful or you're going to Disneyland".  And if a person was banned temporarily, whenever someone from that IP attempted to access the board, they would go to the home page of Disneyland.
Title: Re: Living with Food Allergies, FEB 2013
Post by: jschwab on November 16, 2013, 12:33:28 PM
I hate always having to stand around with my hands in my pockets instead of helping clean up at events involving food. Or not pitching in to clean up food wrappers at the playground.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on November 16, 2013, 05:15:05 PM
 I hear ya. 

I always try to volunteer with a clear statement about "set up, not clean-up" for food based activities.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on November 16, 2013, 06:52:28 PM
Okay, why is it that nobody else seems to understand that an "awards" banquet feels like...

well, not like a reward of some sort, anyway.

More like punishment. 

 :hiding:

So let's recap.  To attend an "awards" banquet with food allergies one must:

a) explain to the organizers that you'll need some accommodations wrt food.
b) once they've agreed to that, you'll need to either:
    i) speak with caterers extensively and hope for the best (unwise with low threshold or MFA)
    ii) FURTHER explain why you need to know exactly WHAT is being served so that you can...

c) determine how to surreptitiously handle the fact that you won't be eating anything that you didn't bring yourself anyway.

d) Must be non-messy, something easily pulled out of a bag and sufficiently identical as to not make others uncomfortable...  and must be substantial enough that nobody nearby will feel compelled to ask "Is that all you're eating??  Let me find you something that you can eat!"

 :disappointed:

I hate events like this.
Title: Re: Living with Food Allergies, FEB 2013
Post by: spacecanada on November 16, 2013, 08:04:36 PM
I had a party in my office when my work (an animal shelter) decided to change from using walnut cat litter to sawdust pellet cat litter.  I can go in the cat rooms now!  :D  (I  :heart: cats!)
Title: Re: Living with Food Allergies, FEB 2013
Post by: twinturbo on November 16, 2013, 08:17:50 PM
Somewhere in there is a roca joke.
Title: Re: Living with Food Allergies, FEB 2013
Post by: jschwab on November 16, 2013, 10:19:57 PM
Okay, why is it that nobody else seems to understand that an "awards" banquet feels like...

well, not like a reward of some sort, anyway.

More like punishment. 

 :hiding:

So let's recap.  To attend an "awards" banquet with food allergies one must:

a) explain to the organizers that you'll need some accommodations wrt food.
b) once they've agreed to that, you'll need to either:
    i) speak with caterers extensively and hope for the best (unwise with low threshold or MFA)
    ii) FURTHER explain why you need to know exactly WHAT is being served so that you can...

c) determine how to surreptitiously handle the fact that you won't be eating anything that you didn't bring yourself anyway.

d) Must be non-messy, something easily pulled out of a bag and sufficiently identical as to not make others uncomfortable...  and must be substantial enough that nobody nearby will feel compelled to ask "Is that all you're eating??  Let me find you something that you can eat!"

 :disappointed:

I hate events like this.

Do you do go out of your way with this for your daughter's sake? I'm just curious, because we never worry at stuff like that (weddings, etc). Hardly anyone ever notices if we don't eat. We just eat before we go and sit and sip, no big deal. I guess if she is the awardee, it's different, though?
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on November 16, 2013, 11:13:10 PM
Exactly-- when you're the one being awarded stuff, then you kind of have to attend.   :-/
Title: Re: Living with Food Allergies, FEB 2013
Post by: jschwab on November 16, 2013, 11:21:34 PM
Exactly-- when you're the one being awarded stuff, then you kind of have to attend.   :-/

Of course, but I don't think anyone would notice if she didn't eat, KWIM? Bringing your own food gets trickier. It's really more about the award, right? Congratulations to her, BTW!

All that considered, it still sucks not to be able to eat at your own party. My husband and I have never had a proper wedding and I always assumed if we ever had a big anniversary party with guests that we would end up serving food we could not eat. That seems kind of weird now, come to think of it, but it would be absolutely impossible to get it safe enough.
Title: Re: Living with Food Allergies, FEB 2013
Post by: SilverLining on November 17, 2013, 02:13:19 PM
I have been nominated to host a Dr. Who party.  (I've been nominated because I'm the only one who has SPACE tv station.   :)

So, food.

I'm in contact with one of the people.  She is planning to make fish fingers and custard.  I'm OK with her bringing may contain items...but she wants to cook it here.  I don't like that.  So, I'm trying to get a list of ingredients BEFORE she shops.  This is proving difficult.

The other two people I don't know.  They are friends of this guest...she invited them, then told my son.  (Just accept that I'm OK with this.  She's kind of my adopted daughter anyway, lol.). But....I don 'to know if they want to bring food.  I told her they do not have to.  But if they want to....maybe bananas.....or mini oranges.....or apples for a rubbish plate.

~~~

This should all just be fun.  This should not be so stressful.

I HATE ALLERGIES!!!
Title: Re: Living with Food Allergies, FEB 2013
Post by: jschwab on November 18, 2013, 07:54:40 PM
I made dinner to feed an army and then could not eat it because it tasted "funny". Half a bottle of Benadryl later... sigh. I hate this new allergy thing for me where it's in my throat and is intense nausea. And it was an unwelcome reminder that I still do not have a good plan for the Epi.
Title: Re: Living with Food Allergies, FEB 2013
Post by: SilverLining on November 21, 2013, 08:12:57 PM
Jschwab, sorry you weren't able to eat the food.  You've recently developed your allergies?  Or got new ones?  Hopefully you are able to pinpoint the guilty ingredient.

~~~

One of ingredients the person wanted to use, I cannot find safe.

Fortunately she's OK.  I think she's baking something else (cookies or something).  Even if it's may-contain it's not an issue if she cooks it elsewhere.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on November 21, 2013, 08:51:53 PM
"Eating Nuts is Tied to Lower Risk of Death"

:rofl:

Wow, is THAT ever a doozy of an-- um-- overgeneralization
Title: Re: Living with Food Allergies, FEB 2013
Post by: YouKnowWho on November 21, 2013, 09:18:43 PM
Along those lines, I keep getting suggested FB advertisements in my feed.

Mr. Peanut, various breadmakers advertising whole grain wheat bread, perfume infused jewelry, Glade candles, etc

Today Chiquita banana asked me to like them to learn more about their health benefits  :-/
Title: Re: Living with Food Allergies, FEB 2013
Post by: jschwab on November 21, 2013, 09:52:07 PM
Jschwab, sorry you weren't able to eat the food.  You've recently developed your allergies?  Or got new ones?  Hopefully you are able to pinpoint the guilty ingredient.


Thanks. I have two "old" allergens - milk and shellfish - and one brand-new one - almond - so things in my kitchen are just likely still cross-contaminated to a small degree with the new allergen even though my family cleaned like crazy for me. We used it in flour form so it was everywhere. The mystery ingredient was a bottle of fish sauce and also chicken stock my husband made. I have never had a problem with fish sauce but maybe it had some contamination on the bottle since it was around for awhile and was among the things we didn't consider could be contaminated.
Title: Re: Living with Food Allergies, FEB 2013
Post by: rebekahc on November 21, 2013, 10:40:46 PM
It could be that you're reacting to the fish sauce since your system is on high alert right now, too.
Title: Re: Living with Food Allergies, FEB 2013
Post by: hezzier on November 21, 2013, 11:02:55 PM
At swim practice tonight, DS got a side stitch (he calls them chest cramps).  Coach came over to tell me after practice.  Somehow we got onto the topic of allergies.  She made a comment that at this time of year that shouldn't be a problem, I said he has them year round as well as food allergies.  She asked what foods he was allergic to...so I told her.  She had never heard of anyone being allergic to EGG.
Title: Re: Living with Food Allergies, FEB 2013
Post by: jschwab on November 21, 2013, 11:50:50 PM
It could be that you're reacting to the fish sauce since your system is on high alert right now, too.

I had that thought, too. I know some people with shellfish allergies can deal with fish sauce and some can't. I *thought* I'd had some since my reaction, but I am not sure. We need to throw out the bottle. It was washed on the outside when my family did the big cleanup. So far, nothing more, knock on wood.
Title: Re: Living with Food Allergies, FEB 2013
Post by: hezzier on November 22, 2013, 06:19:19 AM
It could be that you're reacting to the fish sauce since your system is on high alert right now, too.

I had that thought, too. I know some people with shellfish allergies can deal with fish sauce and some can't. I *thought* I'd had some since my reaction, but I am not sure. We need to throw out the bottle. It was washed on the outside when my family did the big cleanup. So far, nothing more, knock on wood.

Did you throw out everything that a cross contaminated measuring spoon could have been dipped into?  Spice, herbs, baking soda. etc

Title: Re: Living with Food Allergies, FEB 2013
Post by: jschwab on November 22, 2013, 10:04:48 AM


Did you throw out everything that a cross contaminated measuring spoon could have been dipped into?  Spice, herbs, baking soda. etc

Yes, we did. I was pretty crummy for awhile after the reaction and having a lot of skin contact reactions but my mom and my husband were heroic in getting the kitchen and pantry cleaned out. Because you shake the fish sauce from the bottle, we just washed the outside. Maybe a mistake.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on November 22, 2013, 10:32:58 AM
J, I'm betting that in the wake of a massive reaction (to the new allergen) your system just has your shellfish threshold WAY reduced from what you're accustomed to.   :heart:

Title: Re: Living with Food Allergies, FEB 2013
Post by: jschwab on November 22, 2013, 10:40:47 AM
J, I'm betting that in the wake of a massive reaction (to the new allergen) your system just has your shellfish threshold WAY reduced from what you're accustomed to.   :heart:

Maybe? Do you react to fish sauce? You are my shellfish-o-meter now ;D. It's Thai Kitchen.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on November 22, 2013, 11:02:33 AM
??? Well, I really have no idea.  I haven't had anything Thai Kitchen in my house since DD reacted to stuff of theirs that they claimed COULDN'T be peanut-contaminated-- that was almost a decade ago.  On the other hand, that may point to a larger manufacturing issue there, as they handle a LOT of super-potent allergens in dust/powdered form that makes cross contamination a bigger problem even in other product lines.  For reference, the product in question was a coconut milk that was in a separate building from their dry/powder mixing and packaging which is where the peanut powder/dust was. 

I don't react to Better-than-Bouillion, though, and that's cleaned/shared lines, I think.  I do sometimes react to Worcestershire, it just depends on how much and how full my allergy cup is otherwise. 

My threshold fluctuates a bit, so I wouldn't say that my experiences are terribly reliable.   :-/
Title: Re: Living with Food Allergies, FEB 2013
Post by: jschwab on November 22, 2013, 11:12:40 AM
??? Well, I really have no idea.  I haven't had anything Thai Kitchen in my house since DD reacted to stuff of theirs that they claimed COULDN'T be peanut-contaminated-- that was almost a decade ago.  On the other hand, that may point to a larger manufacturing issue there, as they handle a LOT of super-potent allergens in dust/powdered form that makes cross contamination a bigger problem even in other product lines.  For reference, the product in question was a coconut milk that was in a separate building from their dry/powder mixing and packaging which is where the peanut powder/dust was. 

I don't react to Better-than-Bouillion, though, and that's cleaned/shared lines, I think.  I do sometimes react to Worcestershire, it just depends on how much and how full my allergy cup is otherwise. 

My threshold fluctuates a bit, so I wouldn't say that my experiences are terribly reliable.   :-/

I did not even think to call them and asked about shared lines. I will investigate...
Title: Re: Living with Food Allergies, FEB 2013
Post by: twinturbo on November 22, 2013, 11:34:59 AM
I doubt they'll truly know since they are so removed from the actual facility of manufacture. Thai Kitchen is a brand, not a manufacturer so it's more similar to Newman's Own. For fish sauce I'd probably go with Squid brand which is a Thai domestic brand because they are more likely to have a dedicated bottling facility in the way Heinz ketchup is such a huge producer. Those little bottles rebranded there's no way they aren't shared with something. Just IMO.
Title: Re: Living with Food Allergies, FEB 2013
Post by: jschwab on November 22, 2013, 12:02:42 PM
I doubt they'll truly know since they are so removed from the actual facility of manufacture. Thai Kitchen is a brand, not a manufacturer so it's more similar to Newman's Own. For fish sauce I'd probably go with Squid brand which is a Thai domestic brand because they are more likely to have a dedicated bottling facility in the way Heinz ketchup is such a huge producer. Those little bottles rebranded there's no way they aren't shared with something. Just IMO.

Oh, interesting. I am embarrassed to admit that this case of fish sauce expired a few years ago, anyway, so I would not be able to track it down anyway.  :P We bought big case with discount from the coop and then I got shellfish allergy so we stopped using the bottles for a while.
Title: Re: Living with Food Allergies, FEB 2013
Post by: twinturbo on November 22, 2013, 12:08:05 PM
Oh, pish. You're talking to someone from an immigrant household. There's no such thing as an expiration date.
Title: Re: Living with Food Allergies, FEB 2013
Post by: Linden on November 22, 2013, 07:27:41 PM
Oh, pish. You're talking to someone from an immigrant household. There's no such thing as an expiration date.

 :rofl:  Asian DH and I totally cracked up.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on November 22, 2013, 08:18:06 PM
Reminds me of the time when my high school BFF wanted to throw a birthday party for a container of dip that my mother had left in our fridge.  Because the expiry was a year out of date. 

 :hiding:  first thing I told my (now) DH was "never accept condiments from my mom without seeing the original container-- and even then, be skeptical.  She refills things."

{shudders}
Title: Re: Living with Food Allergies, FEB 2013
Post by: twinturbo on November 22, 2013, 09:07:26 PM
Oh, pish. You're talking to someone from an immigrant household. There's no such thing as an expiration date.


 :rofl:  Asian DH and I totally cracked up.


No doubt he has similarly unearthed artifacts at his parents or grandparents place. Otherwise we wouldn't have stories to fuel mymomisafob.com. Like hotel snack foods from the late 1980s, or decade old unused codeine stored in the fridge (WTH?) from a surgery no one remembers and a pharmacist who probably retired since filling it.  :thumbsup:
Title: Re: Living with Food Allergies, FEB 2013
Post by: jschwab on November 22, 2013, 10:24:23 PM
Expiration date is (was?) October 29, 2009, folks  ~). I think we bought it 2007 and I got the allergies 2008/2009? Thanks for the laugh.
Title: Re: Living with Food Allergies, FEB 2013
Post by: jschwab on November 22, 2013, 10:25:00 PM
Double post...
Title: Re: Living with Food Allergies, FEB 2013
Post by: hezzier on November 23, 2013, 05:29:24 PM
Friend's PA son is going through desensitization, started with peanut flour, ate an actual peanut today.
Title: Re: Living with Food Allergies, FEB 2013
Post by: Linden on November 25, 2013, 11:00:42 PM
Oh, pish. You're talking to someone from an immigrant household. There's no such thing as an expiration date.


 :rofl:  Asian DH and I totally cracked up.


No doubt he has similarly unearthed artifacts at his parents or grandparents place. Otherwise we wouldn't have stories to fuel mymomisafob.com. Like hotel snack foods from the late 1980s, or decade old unused codeine stored in the fridge (WTH?) from a surgery no one remembers and a pharmacist who probably retired since filling it.  :thumbsup:


:rofl:  I can just see my in-laws saying "They just put a date on there because they have to."  My non-immigrant mother would side with them because, "if it doesn't smell bad, it's fine!"
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on November 26, 2013, 09:36:03 AM
Sounds like my mother.

On the one hand, she's right that there's nothing magical about an expiry.  On the other, though...  I'm pretty sure that things which are years-and-years-and-years beyond it are NOT okay.  This distinction was lost upon her, I must say.
Title: Re: Living with Food Allergies, FEB 2013
Post by: hezzier on November 26, 2013, 09:40:20 AM
This is my MIL also...we haven't been to their house in years.
Title: Re: Living with Food Allergies, FEB 2013
Post by: twinturbo on November 26, 2013, 10:29:12 AM
Well, the idea of refrigerating or putting an expiration date on preparations that are themselves preservatives that predate refrigeration I scoff at myself, like soy sauce, curry, I'd put fish sauce on that list for fermentation and salt content. I openly ignore yogurt and cheese dates, anything that clearly is stabilized at room temp or requires it to ferment. Enzymatic pickles for example.

It's keeping the bag of room service coffee from 1988 when no one drinks coffee and a coffee maker has never been owned and will never be owned pointlessness that we turn the corner in to hoarding territory. I think that's an actual geriatric medicine issue where patients hoard medicines and will store the extras in a huge ziploc all together creating the portable pharmacy of nightmares.

That's until the zombies come. When the zombies attack then you run to all the really old people. They know how to farm and have hoarded a ton of stuff.
Title: Re: Living with Food Allergies, FEB 2013
Post by: YouKnowWho on November 26, 2013, 11:43:07 AM
My parents still have spices with packing tape on them and Shop Rite pricetags.  We moved from NJ in 1984.  I finally convinced them last year to dump the hot sauce bottle that was probably purchased prior to my birth  :evil:
Title: Re: Living with Food Allergies, FEB 2013
Post by: TabiCat on November 26, 2013, 03:00:05 PM
Sending out well wishes for safe and low stress holiday feasts and family gatherings. Foody holidays are just not what they used to be.

---------

MIL has decided that her new corn cassarol would be better with Jelopaneos. I know you don't do Jelopaneos but .....

Not a big worry for me there are plenty of other food I can eat and almost everything will be DS safe but really it is CAN'T not DON'T or won't.  ~)
Title: Re: Living with Food Allergies, FEB 2013
Post by: jschwab on November 26, 2013, 03:49:27 PM
Sending out well wishes for safe and low stress holiday feasts and family gatherings. Foody holidays are just not what they used to be.

---------

MIL has decided that her new corn cassarol would be better with Jelopaneos. I know you don't do Jelopaneos but .....

Not a big worry for me there are plenty of other food I can eat and almost everything will be DS safe but really it is CAN'T not DON'T or won't.  ~)

I got really lucky on this one. My mom is shellfish-allergic, too, (also adult onset) and while her allergy is not as severe as mine, she gets it about segregating utensils and all that. She has always made safe food for me and I have never had a reaction at her house on holidays. She's amazing, especially for someone who has almost zero food restrictions. It really can be that simple and drama-free and my heart goes out to people, especially kids, who don't have their restrictions honored or respected :(.
Title: Re: Living with Food Allergies, FEB 2013
Post by: jschwab on November 26, 2013, 04:35:54 PM
Oh my gosh, when you are extremely food-restricted this is what your monthly shopping list looks like:

100 pounds meat
30 bags frozen veggies
100 pounds potatoes
45 cartons of eggs
etc.

Title: Re: Living with Food Allergies, FEB 2013
Post by: twinturbo on November 26, 2013, 05:00:51 PM
Taking the temp of FAS on the following idea.

What if we built an internal registry of vetted or recommended food allergy and anaphylaxis allergists? Also how epinephrine supplies and anaphylaxis management works outside our home country, particularly in areas of the world that have limited supplies and less experience with food induced anaphylaxis or much of any anaphylaxis?

This occurred to me as I'm building a personal registry in the Asia-Pacific area, particularly Taiwan, Singapore and Japan. For example, I know which clinician I would see in Singapore, and connect with FA support on the ground there, but I also know at times epinephrine auto-injectors become severely constrained at times with the supply available by lottery. Taiwan is vastly different, it's not as international as Singapore but a lot of the allergy and anaphylaxis research comes from there. I'm working on the epinephrine availability there.

I intentionally left HK out because it has such a large international footprint there it's a special case, much more accessible and diverse. I also wouldn't have much need for anything there personally beyond a daytime visit.

Mainland China--so vast not much point until you get to specific region or city. But I can find out.

I know a lot of us have traveled so I wonder if we pooled it can it coalesce into a resource?
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on November 26, 2013, 05:05:54 PM
Interesting idea, TT-- yes, I think that such a resource WOULD be very valuable.

I simply have little idea what exists in many of the places that we traveled in the EU and UK-- our plan was basically reliant upon carrying about 14 autoinjectors, with the idea that even if we needed to burn a couple, we'd be fine without replenishing our stock prior to our return flights.  Emergency department and a fistful of documentation from our stateside allergist (who is an experienced international traveler himself) was our "plan."

We did find it useful to think through having reliable cellular and emergency dispatch numbers in each country.   
Title: Re: Living with Food Allergies, FEB 2013
Post by: twinturbo on November 26, 2013, 05:14:30 PM
Definitely. We'd like to take the kids to Europe some day and if both can't go maybe the older one with fewer allergies can first. The idea would be to look before leaping. We've been to Europe a few times but that was before kids and FA. I wouldn't have a clue how we would handle it there besides chef's cards ( ~)right), phones and EAP. England is fairly straightforward but say we want to go to Ireland? Hospitals where? Chemist shop where? Epinephrine supply? Allergists--vetted allergists.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on November 26, 2013, 05:22:42 PM
eragon would know.

 :yes:  She lives in the UK, but she and her family have traveled most of the EU on the continent.

We didn't travel much in Ireland-- only Dublin proper.  I have to say that for PA/TNA, Europe was a breeze.  Egg/Milk would be fairly nightmarish with a low threshold, but you can also do advance planning via some of the local fast food options, which is what we did.  DD ate a lot of Mcdonald's, which was (ironically) safe for her there and not-so-much here.

We did not travel with pre-vetted allergists listed.  I didn't really see much point when I stopped and considered it.  I have our allergist's e-mail contact, which I could give to a provider there... and beyond that we were going to be dealing with first responders and ED staff, so our paper documentation (and I kept a backup on a flash drive with my passport and financial info, just in case, you know?) was really key-- it documented the highlights (?) of DD's reaction history, and we also carried with us support meds:

oral steroids
antihistamines
inhaled steroids and short-acting bronchodilators

So we could opt to follow treatment orders from our regular allergist, basically, if we felt we should-- regardless of what an in-country ED physician thought. 

Pharmacy practice is considerably different in Europe-- we would have had little difficulty obtaining steroids if we'd needed a longer course of them, honestly.



Title: Re: Living with Food Allergies, FEB 2013
Post by: jschwab on November 26, 2013, 06:07:44 PM
When I went last year (to Germany), I took my own food and bought and cooked simple meals for myself. I did not eat in any restaurants - too risky. I went hungry a lot because they lack simple convenience foods like plain potato chips and I did not expect that but I survived it fine. It was easier when I was eating with family in their home and I could look at labels. I speak German fluently so I could ask about allergens, but restaurant eating is outside my comfort zone even here since I have been dinged so often.

One thing to consider is that waitstaff in Europe is often not native to wherever you are so even if you have a chef card and speak the home language fluently, that can present a barrier.
Title: Re: Living with Food Allergies, FEB 2013
Post by: Janelle205 on November 26, 2013, 10:00:46 PM
Does anyone else get really, really uncomfortable when characters on TV shows have allergic reactions or asthma attacks?

I hate asthma attacks on TV shows.  Probably because I've had some pretty spectacular ones, but they really freak me out.
Title: Re: Living with Food Allergies, FEB 2013
Post by: spacecanada on November 27, 2013, 09:57:41 AM
Great idea TT!

When I went to Finland (to attend a youth conference) I relied on restaurants and supermarkets for food.  I brought plenty of food from home but needed very little of it.  I had chef cards translated into Finnish, although almost everyone spoke very good English.  The allergy awareness and accommodations there were really good, even in quick service restaurants.  I had emergency numbers memorised and in my phone, knew where the hospital was and made sure key people were Epi-trained, but didn't look into local anaphylaxis treatment procedures or availability of epinephrine auto-injectors (I brought six of them with me). 

I never would have thought auto-injectors could be in limited supply in developed countries such as Singapore.  Do they prescribe phials of epinephrine and syringes to those who don't get the auto-injectors?  That would be pretty scary to manage on your own, being able to draw and administer the proper amount during a reaction.

What I would like to (also) see, or have a link to, is in which states can paramedics and first responders (fire fighters, police, etc.) administer epinephrine?  Or which states have ambulances without paramedics, just first responders or EMTs or whatever the case may be.  How does that affect allergy management in those states, should I ever vacation there?  I never really thought about that until my recent reaction whilst on holidays (in America), in the ambulance, wondering if they could administer epinephrine if my initial dose wore off and I needed more.  (Turns out they could, and they had it ready because I was relapsing, thankfully I didn't need it because my vitals were okay, but what if they didn't have the ability to administer it and I needed it?)  At home, all fire fighters are trained paramedics (I wouldn't expect this elsewhere), all fire trucks and rescue vehicles have epinephrine in their 'first aid' kits, and all emergency ambulances come with paramedics.   

I guess I didn't do my homework before vacation, thinking most places (in Canada, America, and northern Europe) would be like home in their first responders and anaphylaxis management.  With so many other things to think about to plan a safe vacation, this one slipped my mind in the pre-planning stages and it worries me.  It's now high on my radar and freaking me out a bit because we love to travel and know very little about differences (if any) in anaphylaxis management in places we visit.  Not to mention, where does one find out this information before a vacation?  It would be great if we had something here to refer to. 
Title: Re: Living with Food Allergies, FEB 2013
Post by: twinturbo on November 27, 2013, 10:08:18 AM
Does anyone else get really, really uncomfortable when characters on TV shows have allergic reactions or asthma attacks?

I hate asthma attacks on TV shows.  Probably because I've had some pretty spectacular ones, but they really freak me out.

I don't like any medical 'humor', or 'humour' to be inclusive, and that's coming from someone with Stifler brain.
Title: Re: Living with Food Allergies, FEB 2013
Post by: jschwab on November 27, 2013, 03:33:48 PM
Um, thank you, doctor, for the living will brochure handed to me immediately upon acknowledging my life-threatening food allergies. I know this means you are a good doctor who has their patients' best interests at heart, but I had not been thinking along those lines today  :P.
Title: Re: Living with Food Allergies, FEB 2013
Post by: LinksEtc on November 27, 2013, 03:45:13 PM
I'm sorry jschwab, but that made me lol. 
Title: Re: Living with Food Allergies, FEB 2013
Post by: jschwab on November 27, 2013, 03:47:52 PM
It made me laugh, too. Sigh, gallows humor for allergists, I guess.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on December 02, 2013, 12:23:48 PM
Getting your braces off just isn't that exciting when 95% of the stuff that was verboten... is...

er--

still out-of-bounds anyway.

I guess we can MAKE toffee, biscotti, and taffy/caramels. 
Title: Re: Living with Food Allergies, FEB 2013
Post by: jschwab on December 02, 2013, 06:04:11 PM
Getting your braces off just isn't that exciting when 95% of the stuff that was verboten... is...

er--

still out-of-bounds anyway.

I guess we can MAKE toffee, biscotti, and taffy/caramels.

I make taffy/caramels with maple syrup. It's easier because it's already liquid and it tastes fantastic.
Title: Re: Living with Food Allergies, FEB 2013
Post by: jschwab on December 04, 2013, 03:12:22 PM
I bought hard boiled eggs and only saw after I cracked them that they were coated in a "natural resin". Is NOTHING unadulterated?
Title: Re: Living with Food Allergies, FEB 2013
Post by: twinturbo on December 04, 2013, 08:38:19 PM
Thank goodness FIL lives up the block because DH is en route to Boston. I got nailed by something tonight. He came over for the first hour while the Benadryl and Zyrtec kicked in. At least the kids had a nice distraction with grandpa. *knock on head* Time for a cuppa to combat the sleepies.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on December 04, 2013, 10:16:50 PM
Oh man-- I'm sorry.   :grouphug:
Title: Re: Living with Food Allergies, FEB 2013
Post by: jschwab on December 04, 2013, 11:17:17 PM
Oof, I hope you feel better! Do you know what happened?
Title: Re: Living with Food Allergies, FEB 2013
Post by: PurpleCat on December 05, 2013, 07:18:49 AM
How are you doing now?  That sounds scary.
Title: Re: Living with Food Allergies, FEB 2013
Post by: twinturbo on December 05, 2013, 10:00:32 AM
Ok. Boys are ok. FIL checked in with me this morning. Basically eating white rice and plain chicken until DH gets back. It was probably something in the birch or rose family. That red, burning area around the mouth after I crunched into a chunk of celery maybe in Costco soup. If DH was home I would have been meh about it but the kids, KWIM? I was like hey dad can you come down for an hour? Went over 911 calls (again) with my oldest and pinned his MedicAlert panic button to him.
Title: Re: Living with Food Allergies, FEB 2013
Post by: PurpleCat on December 05, 2013, 01:42:36 PM
Glad everyone is OK.  How unnerving and yes, I KWYM.......

Being a mom complicates everything - and we are NOT allowed to be sick, hurt, or out of commission in anyway!   ;)  So good you can count on your FIL.
Title: Re: Living with Food Allergies, FEB 2013
Post by: jschwab on December 05, 2013, 06:04:21 PM
Scary that you were not able to positively identify it :(. Hope recovery is OK.

I realized going into the courtroom today for jury duty that if I had a reaction, no one would know and I'd be isolated from my stuff so I asked a fellow juror to be aware I have an Epi in my bag. He was so nice about it.
Title: Re: Living with Food Allergies, FEB 2013
Post by: hezzier on December 05, 2013, 09:10:14 PM
DS had a field trip this morning so I went in to check if his teacher wanted my extra epis for the bus ride or did she have the set from the nurse.  Parents were not riding the bus, but could meet them at the auditorium.  She said she had the schools so all was good (I can honestly say DS got the best teacher for him this year, not only does she get allergies, but she gets him also).  She then proceeded to tell me that her niece has allergies (to what I don't know) and recently had a reaction.  The niece's DH had to give her an epi, but apparently administered it more on the front of the thigh not the side.  The needle hit the bone and caused some serious pain and suffering.  Did not sound pleasant at all.
Title: Re: Living with Food Allergies, FEB 2013
Post by: ajasfolks2 on December 06, 2013, 06:37:20 AM
There's always one.

One teacher who -- even though he/she supposedly read and signed the 504 -- still offers candy as a reward.

Seriously.

It really is NOT THIS HARD to comprehend:

no food as a manipulative, incentive, or reward.

The 504 does NOT state, "unless you offer a nonfood <bs> second class alternative".

*sigh*


Title: Re: Living with Food Allergies, FEB 2013
Post by: ajasfolks2 on December 06, 2013, 06:38:28 AM
Make it better.  Make it happen.  Make it last.

Title: Re: Living with Food Allergies, FEB 2013
Post by: PurpleCat on December 07, 2013, 11:42:36 AM
DD went to a play last night with a friend from school and their family.  The friend's brother was in the play.  The mom knew the concessions would not be safe and she gave DD a chocolate bar she bought at Whole Foods that was nut free, dairy free, soy free......basically allergen free.  What a lovely unexpected thing to do for my DD.   :yes:
Title: Re: Living with Food Allergies, FEB 2013
Post by: GoingNuts on December 07, 2013, 04:29:39 PM
PC, friends like that are worth their weight in gold.  So happy your DD had that experience.
Title: Re: Living with Food Allergies, FEB 2013
Post by: SilverLining on December 08, 2013, 07:13:06 PM
I am needing to relearn how to read a label.

Again, I bought something with a big bold peanut free label.  Got it home, and there is a nut warning.

I am NOT complaining.  For people who are allergic to peanuts but not to nuts this is good.  I still completely avoid both, so, I just need to relearn.
Title: Re: Living with Food Allergies, FEB 2013
Post by: jschwab on December 08, 2013, 09:03:39 PM
I am about five years into my food allergies and my mom just told me yesterday that my brother was allergic to cheese, eggs and orange juice as a kid (outgrew them). She didn't think it mattered to mention it.
Title: Re: Living with Food Allergies, FEB 2013
Post by: GoingNuts on December 09, 2013, 06:10:33 AM
jschwab, several years into my younger DS's allergy/asthma nightmare, my aunt casually mentioned to me over lunch that my paternal grandfather had severe asthma and "could only eat mama's cooking" because he got terribly sick whenever he ate anything else, and there was a long list if things he couldn't eat.  When I asked her to define what really sick meant, she didn't know.  Only that he never ate out of the house.  ~)

Who knows WTH that mean in 1930's NYC?
Title: Re: Living with Food Allergies, FEB 2013
Post by: jschwab on December 09, 2013, 10:00:37 PM
jschwab, several years into my younger DS's allergy/asthma nightmare, my aunt casually mentioned to me over lunch that my paternal grandfather had severe asthma and "could only eat mama's cooking" because he got terribly sick whenever he ate anything else, and there was a long list if things he couldn't eat.  When I asked her to define what really sick meant, she didn't know.  Only that he never ate out of the house.  ~)

Who knows WTH that mean in 1930's NYC?

Hmm, interesting  ??? ???. I think she thought it didn't matter to mention since it was hives only (no respiratory involvement) and he outgrew it. I will have to revise the whole family history I gave the allergist a couple weeks ago.
Title: Re: Living with Food Allergies, FEB 2013
Post by: krasota on December 10, 2013, 07:41:12 PM
Not happy that my carrot allergy has become contact reactive.

Oh, well, at least having a toddler makes this very easy to discover.  And it's only localized, too, which is a good thing.
Title: Re: Living with Food Allergies, FEB 2013
Post by: jschwab on December 14, 2013, 10:44:25 PM
My kids took my mouth turkey calls and used them after we went to a party where they ate all kinds of foreign stuff. I really don't want to be a bad mom and get whiny but, seriously, they go INSIDE the mouth. I am good with germs but I can't deal with the potential contamination. I am sure it's fine but really? Really? They get cut down to size and mold to the mouth in time, so if I can't use them I have to start out all over again with brand new ones.
Title: Re: Living with Food Allergies, FEB 2013
Post by: Janelle205 on December 17, 2013, 08:30:37 PM
One of the great things about food allergies is that you make lots of foods that are truly more delicious because they are made from real stuff and from scratch.


One of the not so awesome things is that then, your husband tells all of his friends at work about the delicious things that you make at home for him and then signs up to bring them for the holiday work potluck.  Yes, there is nothing that I would rather do right now then make a huge batch of my homemade 'Mexican' mac and cheese, for which I need to make a seasoned cheese sauce, fresh salsa, and seasoned cooked chicken.  I know it is great.  That is why I sometimes take time to make it for you.
Title: Re: Living with Food Allergies, FEB 2013
Post by: hezzier on December 20, 2013, 08:22:04 AM
I know I've said on here that I love DS's 3rd grade teacher, and some won't agree with food in the classroom, but anyway...

Teacher asked me if there were any safe candy canes.  I said Spangler and told her I had seen them on sale at local grocery store.  So DS's gift from teacher was a book wrapped with a candy cane attached.  Here's the amazing part...

She photocopied the side of the spangler box and attached it to the candy cane!

Love this

Title: Re: Living with Food Allergies, FEB 2013
Post by: twinturbo on December 20, 2013, 10:13:37 AM
I would take that as an incredible gesture. My oldest's pre-K teacher was one of the extremely few people I actually trusted to cook for him, even over most of our family. She even started carrying his EpiPens like I do, on her all the time to the point she took them home unintentionally a once or twice.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on December 21, 2013, 10:35:54 AM
Hezz, that IS lovely.


Our allergist's office did that for DD when she was in her first year of allergy shots.  But it always surprises and touches me when someone (even them) gets it so well.   :heart:
Title: Re: Living with Food Allergies, FEB 2013
Post by: yelloww on December 21, 2013, 01:16:47 PM
Swung through CVS to pick up a new set of Auvi Q's before year end. The person who rang me out said "does this person have any allergies?". My answer was along the lines of "um, yeah, that's why I'm picking those up!"  :insane:   :dunno:

Apparently they were seeking an update on allergy info in the computer for ds and simply wrote "allergies?" on the Rx slip for the Auvi-Q.
Title: Re: Living with Food Allergies, FEB 2013
Post by: Janelle205 on December 21, 2013, 04:30:03 PM
To give them credit, my first epi script was as much (and probably more) for severe asthma than for allergies.  But that does seem like a pretty ridiculous question.
Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on December 21, 2013, 09:22:22 PM
Our cvs has put bags of peanuts under the counter at the pharmacy. Grrrrr.


Krasota that is not good news about carrots.
Title: Re: Living with Food Allergies, FEB 2013
Post by: LinksEtc on December 21, 2013, 09:33:39 PM
Dd has been having a bit of an asthma flare this week.  Ped office suggested coming in for a quick check and things looked good.  This was the first time I met this doc.  I just answered his basic ?s.
He told me I was one of the best educated asthma moms he's met  :) .


In the back of my mind I was congratulating myself for not sharing any of my unorthodox asthma ideas & staying strictly on-topic.    :hiding:
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on December 21, 2013, 10:56:35 PM
 :grouphug:   Links.
Title: Re: Living with Food Allergies, FEB 2013
Post by: YouKnowWho on December 22, 2013, 11:16:05 AM
I am a little annoyed with the Publix pharmacy because their system allows for allergens but not incorrectly IMO.  They have DS1's rye allergy marked as grass  :disappointed:  Granted our major concerns with meds tend to be wheat and barley (malt sweeteners) and egg.  But I am still puzzled to how a grass allergy would factor into medication.  Now granted, I have yet to run into a medication that included rye but it's still annoying.

Yes, I have gone up the corporate line with this and been told it is more than sufficient.   :rant:
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on December 28, 2013, 02:03:03 PM
Just realized that my DD14 is attending her fourth birthday party ever this afternoon.   :-[

What makes this kind of pitiful and sad?

She's gone to all of those she's been invited to.   :hiding:

In related news, she will be soloing at this one.  But we're still working out whether or not she'll be comfortable with me going all the way home since it's on the other side of town... meaning that she'll be waiting for 20 minutes or more if she texts one of us an SOS.

Title: Re: Living with Food Allergies, FEB 2013
Post by: Janelle205 on December 28, 2013, 08:04:31 PM
I have found ingredient changes on THREE previously safe foods today.  Bah.
Title: Re: Living with Food Allergies, FEB 2013
Post by: PurpleCat on December 29, 2013, 06:49:04 AM
I am a little annoyed with the Publix pharmacy because their system allows for allergens but not incorrectly IMO.  They have DS1's rye allergy marked as grass  :disappointed:  Granted our major concerns with meds tend to be wheat and barley (malt sweeteners) and egg.  But I am still puzzled to how a grass allergy would factor into medication.  Now granted, I have yet to run into a medication that included rye but it's still annoying.

Yes, I have gone up the corporate line with this and been told it is more than sufficient.   :rant:

So far all the pharmacies I have used have put DD's garlic allergy under parsley oil!  When will they learn, there is no "box" for allergens to fit in?
Title: Re: Living with Food Allergies, FEB 2013
Post by: twinturbo on December 29, 2013, 10:38:47 AM
That's weird. Why parsley oil at all?
Title: Re: Living with Food Allergies, FEB 2013
Post by: LinksEtc on December 29, 2013, 10:38:38 PM
Hope you don't mind another asthma post.

DD:  I have to take my medicine eeeevveerryy morning.

Me:  It only takes a few seconds, it keeps you healthy, etc.

Dd:  yeah, but that's 10 seconds and 10 seconds all my life and that turns into years.

The drama.

Title: Re: Living with Food Allergies, FEB 2013
Post by: GoingNuts on December 30, 2013, 07:42:54 AM
That's funny Links.  At least to an outsider!
Title: Re: Living with Food Allergies, FEB 2013
Post by: PurpleCat on December 30, 2013, 07:50:39 AM
I don't know and no one can tell me.  It's just bizarre.  (the parsley oil I mean)
Title: Re: Living with Food Allergies, FEB 2013
Post by: LinksEtc on December 30, 2013, 09:19:05 AM
 :grouphug: CM.


That's weird about the pharmacies.  If a customer has a rxn and they purposely documented the allergy incorrectly, I would think that opens them up to all sorts of problems.
Title: Re: Living with Food Allergies, FEB 2013
Post by: twinturbo on December 30, 2013, 12:50:24 PM
10 s/day 365 d/yr

3,650 s / 60s per minute = 60.833333 min

Only 1 hour per year.

She'll be happy to know it would take 8,760 years before that 10 seconds per day comes to one earth year. I didn't adjust for leap years or Daylight Savings or travel to different time zones. Or extraterrestrial adventuring, travel at speed of light, etc.
Title: Re: Living with Food Allergies, FEB 2013
Post by: LinksEtc on December 30, 2013, 03:45:22 PM
10 s/day 365 d/yr

3,650 s / 60s per minute = 60.833333 min

Only 1 hour per year.

She'll be happy to know it would take 8,760 years before that 10 seconds per day comes to one earth year. I didn't adjust for leap years or Daylight Savings or travel to different time zones. Or extraterrestrial adventuring, travel at speed of light, etc.

 ;D, you crack me up.  For the longest time, I didn't fully appreciate your sense of humor ... lately, lots of LOL's.

Technically, it's 40 seconds a day when in green zone - 2 puffs a.m. & 2 p.m.

I have no idea why my little second grader suddenly wants to become noncompliant.  I told her we could discuss her concerns with the doc, but she said no, and "don't you embarrass me".   :)
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on December 30, 2013, 04:02:20 PM
To which my response is an innocent.... What?  I thought you had questions about management... shouldn't we discuss those with the "expert" on management?

 :thumbsup:


Either that or "Well, then don't MAKE me embarrass you."


Depending on the day and the level of sass, I mean.

Title: Re: Living with Food Allergies, FEB 2013
Post by: LinksEtc on December 30, 2013, 04:05:54 PM
 :)
Title: Re: Living with Food Allergies, FEB 2013
Post by: twinturbo on December 30, 2013, 04:30:16 PM
My 7 year old model comes in the 2007 Rules Lawyer edition as well. He would have tried to squirm out on some relative temporal technicality if I didn't CYA it.

As for me, I was raised by enlisted sailors so somewhere below 'pack of wolves'. It's true, my mom's family never forgets to remind me.
Title: Re: Living with Food Allergies, FEB 2013
Post by: yelloww on January 02, 2014, 03:49:03 PM
Auvi Q popped out of ds's pocket of his track pants at Dave and busters today. We realized it hours later that it's missing. I had another one with me the whole time, but now I'm hoping that someone finds it at d and b and turns it in. There were kids there today since school was out so hopefully no kid finds it and starts playing with it.

We have two others still, but now we have to get preauthorization for our insurance. Ugh.
Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on January 02, 2014, 04:02:08 PM
If it's not the ocean, it's got to be something, huh? Yikes. Sorry.

It just occurred to me that when we out packing tape on the label next time around to out contact info underneath.
Title: Re: Living with Food Allergies, FEB 2013
Post by: yelloww on January 02, 2014, 04:11:26 PM
We've lost two to water and moisture. Ocean twice actually. I just forgot to post about it.
Title: Re: Living with Food Allergies, FEB 2013
Post by: twinturbo on January 02, 2014, 04:54:48 PM
Mine went through the washing machine.
Title: Re: Living with Food Allergies, FEB 2013
Post by: twinturbo on January 06, 2014, 12:30:50 PM
Packing for two MFA kids on a 'simple' daytrip. The phrase slower than molasses rolling uphill in barrell comes to mind. At this point a camper starts to look good.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on January 06, 2014, 12:39:25 PM
You need a support van like the cyclists in the Tour de France.  That's my experience, anyway.  LOL.
Title: Re: Living with Food Allergies, FEB 2013
Post by: Janelle205 on January 06, 2014, 01:39:49 PM
It's to the point now where I only focus on packing the irreplaceable stuff.  I do the best I can with clothes and the like and then really focus on the meds and emergency food bag.

I always forget something important when we go somewhere that we have to end up buying, like underwear, deodorant, a hairbrush, etc.  But my med bag is always impeccable.
Title: Re: Living with Food Allergies, FEB 2013
Post by: YouKnowWho on January 07, 2014, 09:47:10 AM
You should see me pack for NJ.  I know it's still civilized and all but you wouldn't know that based on how I pack.

We have a crate that we pack in the car now.  That is the one to be unloaded in NJ.  In the backpack, I carry enough snacky food that if the worst happened, I would have food for five people for three days.  It always makes me nervous on the drive up and down, where we stay for the night, etc.

Which reminds me - must send DH with a larger suitcase this month and a shopping list.  Free checked bag = stocking up on much less expensive GF products :)
Title: Re: Living with Food Allergies, FEB 2013
Post by: twinturbo on January 09, 2014, 09:45:52 PM
Truth stranger than fiction my severely peanut allergic child must be retrained to say he loves Charlie Brown and Snoopy rather than an exhuberant, "I love Peanuts!" He's not confused even when reading labels but I don't need him confusing classmates or teachers.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on January 09, 2014, 10:10:17 PM
 :misspeak:   ;D


Packing PLANNING (I haven't even GOTTEN to "packing" yet) for an all-day tomorrow.  Realized that pretty much, we have canned beets, ramen, and some cabbage, in addition to sunbutter crunch bars.  Hm.  We may get stuck in PDX traffic homebound.

Sure, that sounds like lunch to me, right?    I mean, the canned beets probably aren't ideal...  maybe I'll cook some carrots in mirin and make risotto balls.  Then again, maybe DH and I will eat sandwiches from Safeway and DD will eat the ramen.

Title: Re: Living with Food Allergies, FEB 2013
Post by: twinturbo on January 09, 2014, 10:34:29 PM
Have you ever dry-fried the ramen? My mom used to make it as a side dish all the time if we weren't eating it as a soup. I believe I have mentioned before I'm composed of at least 20% MSG by volume. Anyhow, it comes out more chow mein like, hot or cold noodle salad.

For that matter there's a Safeway and Chipotle around there. The Safeway has a lot of open air nutty stuff around the entrance.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on January 09, 2014, 10:50:59 PM
We're also fond of the Broadway deli-- for DH and I, that is.  We often pop in there and get sandwiches.  But we'll probably just swing by safeway on our way out and grab something for him and me.

DD is the one that I pack for, really.  Well, and traffic requires snack food.  Because you just never know on a Friday.
Title: Re: Living with Food Allergies, FEB 2013
Post by: YouKnowWho on January 10, 2014, 09:13:52 AM
Truth stranger than fiction my severely peanut allergic child must be retrained to say he loves Charlie Brown and Snoopy rather than an exhuberant, "I love Peanuts!" He's not confused even when reading labels but I don't need him confusing classmates or teachers.

I used to buy a store brand of fruit treats for DS1 back when he tested positive for peanuts.  They were Snoopy snacks and I thought how cute.  I didn't notice the outside wrapper until DH wrestled it out of DS1's hand in a moment of panic - it said Peanuts  :evil:
Title: Re: Living with Food Allergies, FEB 2013
Post by: twinturbo on January 10, 2014, 11:40:31 AM
Last moment schedule addition: surprise soy challenge for mom. Grabbed DH's coffee by mistake.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on January 10, 2014, 12:22:24 PM
 :misspeak:  Hope you are okay, TT.   :heart:


Leaving for PDX. finally
Title: Re: Living with Food Allergies, FEB 2013
Post by: LinksEtc on January 11, 2014, 08:37:35 AM
After all this time, I shouldn't have to keep reminding family members that where dd goes, her medicine bag goes.

 :pout:


A bag I got from one of you, btw, which has worked out great  :heart: .

Title: Re: Living with Food Allergies, FEB 2013
Post by: GingerPye on January 11, 2014, 12:08:20 PM
It's esp bad when one has to remind Dad of that particular fact.   ~)
Title: Re: Living with Food Allergies, FEB 2013
Post by: LinksEtc on January 12, 2014, 09:16:37 AM
Yeah,

In.total.agreement


 :paddle:
Title: Re: Living with Food Allergies, FEB 2013
Post by: PurpleCat on January 12, 2014, 09:57:44 AM
repeatedly!



broken record!



Thank goodness DD is now independent!  She now tells him - LOL!
Title: Re: Living with Food Allergies, FEB 2013
Post by: twinturbo on January 13, 2014, 04:44:27 PM
On the ingredient list of Enjoy Life S'mores bar is "brown drizzle". 
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on January 13, 2014, 05:14:32 PM
 :misspeak:

Do not want.   :-X
Title: Re: Living with Food Allergies, FEB 2013
Post by: twinturbo on January 14, 2014, 09:03:33 AM
For variety they also have white drizzle.
Title: Re: Living with Food Allergies, FEB 2013
Post by: yelloww on January 14, 2014, 11:25:43 AM
Ds tried to go to basketball practice last week without his Epi. He said "well, they won't be eating there, it isn't a big deal".  :dunce:

Spoiler (click to show/hide)
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on January 14, 2014, 12:02:59 PM
 :grouphug:   for you, Yellow.

And  :bonking:  for your teen.  {sigh}
Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on January 14, 2014, 11:25:25 PM
yellow, DS had a reaction in elementary school during PE. Best we can tell it was accidental ingestion after picking up protein off of a hockey stick--and then having a snack before washing or wiping his hands.

Spoiler (click to show/hide)
Title: Re: Living with Food Allergies, FEB 2013
Post by: PurpleCat on January 15, 2014, 10:53:30 AM
I've share many stories like these with DD. 

It was quite a moment when she came home and told me one that had not been in the news yet.....next town over......girl very close to her age and she knew some of the girl's friends.  We learned the real story of the incident, not what was in the news. 

That made a big impact.
Title: Re: Living with Food Allergies, FEB 2013
Post by: YouKnowWho on January 18, 2014, 12:11:24 PM
Oblivious DS2 just contaminated the butter (no biggie) and the jelly.  Ugh, as in $10/jar almost impossible to find blueberry spread ala D'Arbo.  (And yes, there are other brands of blueberry jam but none taste as good as D'Arbo).

Remind me never to shower again.  It is just problematic.
Title: Re: Living with Food Allergies, FEB 2013
Post by: PurpleCat on January 18, 2014, 01:32:57 PM
So sorry YKW.  I have a masking tape sign on each jar of jelly with DD's name on it or for real sarcasm, a drawing of a spoon to remind DH not to spread his toast with Sunbutter and then stick the knife in the jelly!!!!
Title: Re: Living with Food Allergies, FEB 2013
Post by: YouKnowWho on January 18, 2014, 01:43:27 PM
We are strict spoon in the jelly only folks due to everyone needing to use a different bread. 

I am honestly so mad about it that I am contemplating making DS2 pay to replace the jelly.  Any other jelly, I would not have cared.  This particular one made me upset because it is so hard to come by and so expensive.
Title: Re: Living with Food Allergies, FEB 2013
Post by: Janelle205 on January 18, 2014, 03:05:25 PM
After several incidents where DH contaminated some kind of spread (PB, jam, etc.) at our house, the special for me stuff now has "Don't be a Dumbass - use a clean spoon" written on them in sharpie.  Probably not so appropriate for everyone.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on January 18, 2014, 03:42:26 PM
Oh, I dunno... that seems like good advice just in more general terms, really...   :misspeak:
Title: Re: Living with Food Allergies, FEB 2013
Post by: Janelle205 on January 18, 2014, 03:53:44 PM
To give me some credit, I did try nicer labeling first.  This works.
Title: Re: Living with Food Allergies, FEB 2013
Post by: BensMom on January 18, 2014, 04:24:06 PM
We don't get fancy jelly. Welch's in the sqeeze container. Solves those problems.
Title: Re: Living with Food Allergies, FEB 2013
Post by: LinksEtc on January 19, 2014, 07:25:52 AM
I love this title:


Standardization of Oral Food Challenges: How Golden is the Gold Standard?


https://aaaai.confex.com/aaaai/2014/webprogram/Session3370.html
Monday, March 3, 2014: 4:45 PM-6:00 PM
Ballroom 6DE (Convention Center)
1.25 CME/ 1.50 CE
Moderator:
Scott H. Sicherer , MD FAAAAI
Title: Re: Living with Food Allergies, FEB 2013
Post by: yelloww on January 19, 2014, 10:00:55 AM
The other week, we were behind a car here with univeristy stickers on it. The one was Columbia (expensive smart school) and their second sticker was Johns Hopkins. I said to ds, that those people had some smart kids who were probably costing them a lot in tuition.

Ds allergist is at Hopkins.

He said to me: "my friends want to go to Hopkins, but for lacrosse. They don't even know that it is a smart science school- just a lacrosse school. A little piece of my soul died when they said that! "

I was cracking up because I always think of Hopkins as a research university and completely forget snout their lacrosse program. He was so disappointed in his friends for not knowing the science part.
Title: Re: Living with Food Allergies, FEB 2013
Post by: twinturbo on January 19, 2014, 11:40:22 AM
I love this title:


Standardization of Oral Food Challenges: How Golden is the Gold Standard?


https://aaaai.confex.com/aaaai/2014/webprogram/Session3370.html
Monday, March 3, 2014: 4:45 PM-6:00 PM
Ballroom 6DE (Convention Center)
1.25 CME/ 1.50 CE
Moderator:
Scott H. Sicherer , MD FAAAAI

Clearly you are Jedi master, no mere knight. Cross my fingers mine is going. Put our two docs back together in person after records transfer.

I wonder if Sicherer came up with the title. I also wonder if DH can attend since it's close to us.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on January 19, 2014, 01:16:41 PM
He usually does, by the way.  My suspicion is that he simply likes going somewhere sunny in Feb/March.   ;)
Title: Re: Living with Food Allergies, FEB 2013
Post by: LinksEtc on January 19, 2014, 01:23:31 PM
Clearly you are Jedi master, no mere knight.

 ;D

I don't know what it says about me that when I'm bored or looking for a little fun, I often go allergy surfing  :hiding: ... I don't think this is quite "normal", but I  :heart: it  :hiding:.


Cross my fingers mine is going. Put our two docs back together in person after records transfer.

Now you have lost me ...  ???



I wonder if Sicherer came up with the title.

I don't know, but it's great!


I also wonder if DH can attend since it's close to us.

That would be cool.
Title: Re: Living with Food Allergies, FEB 2013
Post by: twinturbo on January 19, 2014, 02:00:08 PM
Sicherer was my oldest's allergist, so we had records forwarded to our allergist here who is a graduate of Mt. Sinai. It's convenient for us to have someone who knows the practice really well.
Title: Re: Living with Food Allergies, FEB 2013
Post by: LinksEtc on January 19, 2014, 02:35:08 PM
I wish AAAAI would let patients/parents more into the discussions.  I see they are on twitter now, but their topics all seem so safe.  Can you imagine if AAAAI and FAS really had some deep conversations about some of the stuff we discuss here?  How cool would that be?  What would come of it?
Can you imagine a couple of us feisty moms giving a presentation there  ...   :coolbeans:
I can totally see the Professor-Mom captivating the audience  ;D  .... sharing the patient/parent perspective  :bonking:.
Title: Re: Living with Food Allergies, FEB 2013
Post by: twinturbo on January 19, 2014, 02:37:00 PM
I'm not sure the conference is closed off. DH has attended as a Professor Dad before.

Me personally if I'm my goal is to use  :paddle: to stir this  :poop: it makes more sense to drop in behind enemy lines to raise heck. So whatever special ed disability in education conference meets. After DH went to the allergy congress that was some of the most advanced research in the world. There's not much heck to be raised on that front.
Title: Re: Living with Food Allergies, FEB 2013
Post by: LinksEtc on January 19, 2014, 02:51:32 PM
For myself, I would never really try to attend without being invited in (not holding my breath there).... it's not my place.  No, I'm going to try and be a good mom and not overstep  :-/.

I just can't help but wonder what would happen if patient perspective was given more of a seat at the table.

Title: Re: Living with Food Allergies, FEB 2013
Post by: Janelle205 on January 21, 2014, 08:00:26 PM
This is more a living with asthma, but there are well enough people here who understand that.

It is currently 5 degrees out, with a windchill of -11.  And I'm sitting in a room with a window open, because new furniture fumes are making me wheezy.

At least I don't have to worry about pollen blowing in. 
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on January 22, 2014, 09:55:44 AM
Or insects.  Bonus!   :thumbsup:
Title: Re: Living with Food Allergies, FEB 2013
Post by: spacecanada on February 08, 2014, 04:12:43 PM
Some people just. don't. get. it.  No matter how many times or how many ways I present the facts.  >:(

To many battles lately.  For me and for others.  It's exhausting.  I'd love to get some help from you guys but due to confidentiality I don't think I can say much here.  I'm trying to make a safe environment for a kid (not mine) and other adults are making it very difficult.   :disappointed:
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on February 08, 2014, 04:38:50 PM
 :grouphug:  You can always (also) ask via PM.

Life with LTFA means...

you pretty much NEVER, EVER try anything new during a major weather catastrophe of any kind.

Because foremost in your mind is the thought "what if..." and if the answer is that EMS couldn't easily get to you, and more to the point, take you to the local emergency department, well... not worth the risk.

So there they sit, those King's Hawaiian rolls.  On our counter.   :-/
Title: Re: Living with Food Allergies, FEB 2013
Post by: LinksEtc on February 15, 2014, 09:14:50 AM
I was getting rid of expired medicines yesterday and I thought how nice those clear containers are that the epi's come packed in. 

I asked the kids if they wanted the empty containers and they said yes.  LOL - this morning I see that they have been converted into a "LEGO people jail".   ;D


ETA - my kids are getting older now so I'm not worried about choking hazards ... I wouldn't give them to young kids.  Obviously, they aren't meant to be toys - use your own judgment.

Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on February 15, 2014, 09:46:45 AM
Oh, I am not so sure... many is the epi-trainer that has saved an American girl life at our home, over the years...


 :hiding:
Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on February 17, 2014, 08:25:43 AM
Such a wonderful irony at the Minneapolis Institute if Arts yesterday.

(http://i20.photobucket.com/albums/b205/McCobbre/Mobile%20Uploads/7A7B6F0E-94F8-4E33-9314-B9E88E9D5CE3_zpshngrdf5w.jpg)

(http://i20.photobucket.com/albums/b205/McCobbre/Mobile%20Uploads/8EF28639-E28C-4194-AB95-2C24B4E973A7_zpsl4a0wyar.jpg)
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on February 17, 2014, 09:03:20 AM
:rofl:





When attending a college preview event, your LARGEST problem by far is how to attend a coffee and a luncheon without eating anything, and without making this seem "weird."

And, as a parent, your largest fear is that your child will be so worried about this particular point that she will fail to absorb anything ELSE in the campus visit.  {sigh}

Title: Re: Living with Food Allergies, FEB 2013
Post by: raybright on February 24, 2014, 05:45:13 AM
hey! thought some of you might be interested in this:

http://www.statista.com/statistics/224527/us-allergy-sufferers/

the rate of people with allergies seems to rise, why is that?
Title: Re: Living with Food Allergies, FEB 2013
Post by: SilverLining on February 24, 2014, 07:13:10 AM
My guess is, that would not be food allergy related illness, but more likely seasonal allergies.  So, it would differ monthly based on what pollen and how much is in the air.

Food allergies peak in December.  (I'm half joking.  They are there all the time, but with holiday celebrations, people eat more foods prepared by others in December....so I'm just blaming December.)
Title: Re: Living with Food Allergies, FEB 2013
Post by: twinturbo on February 24, 2014, 09:23:14 AM
hey! thought some of you might be interested in this:

[url]http://www.statista.com/statistics/224527/us-allergy-sufferers/[/url]

the rate of people with allergies seems to rise, why is that?


Longer pollen seasons and proliferation of mites. Globally populations differ in presentation and allergens yet still rising.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on February 26, 2014, 06:23:51 PM
I can only post this here, in a great deal of bemused-- dazed, really-- wonder:

Today one of our CHICKENS laid an EGG in our yard.  And I was pleased.  And I took it into my house.  I felt no fear.  Only happiness that our chickens are pleased and that spring is apparently nearly upon us.


:slack-jawed:

Title: Re: Living with Food Allergies, FEB 2013
Post by: LinksEtc on February 26, 2014, 10:04:46 PM
  :happydance:


 :thumbsup:
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on February 27, 2014, 12:59:13 PM
I jinxed us.


 :hiding:



As I'm getting a spoonful of sunbutter for breakfast, DD quips--

You know, I can't really stand the thought of EATING sunbutter since it started smelling like peanut butter to me.

Spoiler (click to show/hide)


So I told her to roll up her sleeve.

I smeared some on her arm. 


 :hiding:

She turned a bit pink where it was sitting on her.  Hard to say if it was just irritation or not... but the sniffling that she's been doing isn't... and she said that after I wiped it off, her face felt itchy.  (Though she agreed that this was likely to be psychosomatic.)

make-it-go-away-make-it-go-away-make-it-go-away

 :hiding:
Title: Re: Living with Food Allergies, FEB 2013
Post by: booandbrimom on February 28, 2014, 08:47:25 AM
We're off to see the Wizard.

Cross your fingers for us, folks. We're doing the big one - milk - this morning. Gotta go wrench the kid out of bed and buy actual ice cream.
Title: Re: Living with Food Allergies, FEB 2013
Post by: becca on February 28, 2014, 09:23:37 AM
 :crossed: :crossed:

 :luck:  Boo!
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on February 28, 2014, 10:09:32 AM
WOWSERS.


:crossed:   :heart: :crossed:

Title: Re: Living with Food Allergies, FEB 2013
Post by: rebekahc on February 28, 2014, 10:21:14 AM
 :luck:
Title: Re: Living with Food Allergies, FEB 2013
Post by: momma2boys on February 28, 2014, 11:14:40 AM
Good luck!
Title: Re: Living with Food Allergies, FEB 2013
Post by: booandbrimom on February 28, 2014, 12:39:48 PM
We are already back.

He ate about a quarter cup of ice cream in the end with no reaction. We went to Chipotle for lunch and he had sour cream. Hated it, but no reaction.

The only allergens we have left to test are hazelnut and lentil, but the doctor really believes neither will be a problem. She looked at him today and say "So...just peanut, huh?"

I don't even know how to start to feel about all this. I'm so grateful.
Title: Re: Living with Food Allergies, FEB 2013
Post by: momma2boys on February 28, 2014, 12:42:34 PM
That's really great!  :thumbsup:
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on February 28, 2014, 12:43:04 PM
 :D   



(http://marinasleeps.files.wordpress.com/2010/12/confetti-girl.jpg)


HURRAY!!!!
Title: Re: Living with Food Allergies, FEB 2013
Post by: booandbrimom on February 28, 2014, 12:48:23 PM
CM, of everyone, you've been through these years with us. I wish and hope everyone gets this experience some day. I asked him today how it felt to discard five allergens all in one year and he replied "surreal."

We may go out for a birthday dinner at an actual restaurant where he can choose almost anything off the menu. What a concept.

I did ask the doctor the nagging question: if he passed with his RAST still so high, would he have passed years ago too? She shrugged and said it happens when it happens and we should just be happy we're finally done with it.
Title: Re: Living with Food Allergies, FEB 2013
Post by: GingerPye on February 28, 2014, 01:22:09 PM
WOWOWOWOWOWOWOW!!!!  Surreal is right.

there's hope for us. 
CONGRATS!!!!!!!
Title: Re: Living with Food Allergies, FEB 2013
Post by: PurpleCat on February 28, 2014, 02:28:11 PM
Awesome!  Congratulations!!!!
Title: Re: Living with Food Allergies, FEB 2013
Post by: GoingNuts on February 28, 2014, 04:47:14 PM
I  just thrilled beyond words for you both.  Grinning from ear to ear.

CONGRATULATIONS!!!
Title: Re: Living with Food Allergies, FEB 2013
Post by: Janelle205 on February 28, 2014, 07:16:10 PM
These are my favorite kinds of posts.  ;D
Title: Re: Living with Food Allergies, FEB 2013
Post by: twinturbo on February 28, 2014, 08:30:46 PM
That one line comes to mind It's been a long, strange road.

It is very encouraging to hear when kids outgrow. It truly is. Even if we don't get there we need some light at the end of the tunnel.
Title: Re: Living with Food Allergies, FEB 2013
Post by: LinksEtc on March 01, 2014, 08:01:09 AM
Congratulations Boo!!!
Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on March 01, 2014, 09:57:38 AM
That is wonderful!
Title: Re: Living with Food Allergies, FEB 2013
Post by: ajasfolks2 on March 02, 2014, 05:00:44 PM
Bit by bit, most of us are going to have kids who get there too.

Thank you for posting, Boo, and for giving us all another glimmer of hope.

I'm so HAPPY for you all!!

 :yes:
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on March 04, 2014, 12:25:07 PM
It occurs to me that...


most people simply don't understand that there are only four restaurants.  In the world. 

 :misspeak: :hiding:

Sorry-- just rambling, but it's a major point of dissonance socially when you live in a world SO radically separate from what everyone else lives in.    Kind of depressing, really.

I guess I'm feeling kind of down about FA today.   :-[
Title: Re: Living with Food Allergies, FEB 2013
Post by: krasota on March 11, 2014, 08:47:49 PM
Decided I was done packing and would just buy cake ingredients for DD's bday up in NJ.

Forgot that means buying three different flours/starches, sugar, xanthan gum, vanilla, baking soda, and everything else, except for salt, which is exceptionally hard for other people to contaminate with gluten, soy, etc.

Saw sugar on my list yesterday and couldn't think of *why* I'd want it aside from coffee, so bought maple syrup again.  Had to fix that error tonight with yet another trip to the store.

Forgot the starches and in-laws don't seem to have muffin pans, so back DH went to the store just now.
Title: Re: Living with Food Allergies, FEB 2013
Post by: GoingNuts on March 12, 2014, 05:56:01 AM
When DS's phone died last weekend, my mind immediately went to "that place".  Not the logistics of getting it fixed/replaced, not the inconvenience, blah, blah, blah.  Just right to:  "OhmyGod, what if he has a reaction and doesn't have a phone to call for help?"

Yeah, that place.  ~)
Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on March 12, 2014, 06:56:12 AM
I know that place!
Title: Re: Living with Food Allergies, FEB 2013
Post by: SilverLining on March 12, 2014, 07:21:59 AM
When DS's phone died last weekend, my mind immediately went to "that place".  Not the logistics of getting it fixed/replaced, not the inconvenience, blah, blah, blah.  Just right to:  "OhmyGod, what if he has a reaction and doesn't have a phone to call for help?"

Yeah, that place.  ~)

Been there a few times.  When ds' phone was stolen he was given mine immediately until we could get out to buy him one.

And when a teacher took his phone once, I flipped out.  I was OK that it was taken from him in school (though honestly first time a warning would have sufficed) but it was given to the vice principal, who locked it in his office and went home FOR TWO DAYS. 

It never crossed anyone's mind that a middle school kid would have a phone for anything other than playing around.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on March 12, 2014, 10:20:50 AM
Yeah-- I know both of those places.  Well, not LITERALLY krasota's place... but...

having been in the position of "provisioning" in a strange locale. 

Ugh, the PHONE.  I especially love that because my 14yo has a smart phone, we must be "indulgent" parents that encourage her to irresponsibly use FB, INstagram, Twitter, and Vine.  Continuously.

Um-- not so much, actually.  If only she CHARGED it regularly.

She's had to take mine with her to walk the dog in the morning. 

Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on March 12, 2014, 10:27:39 AM
That must be you neck of the woods. Smart phones for 14 year olds is the norm where we are.  No one thinks anything about it.
Title: Re: Living with Food Allergies, FEB 2013
Post by: SilverLining on March 12, 2014, 10:34:15 AM
That must be you neck of the woods. Smart phones for 14 year olds is the norm where we are.  No one thinks anything about it.

Normal here too.  And (other than my son apparently) they all have unlimited data plans.
Title: Re: Living with Food Allergies, FEB 2013
Post by: twinturbo on March 12, 2014, 05:23:32 PM
The play equipment and sandbox looked like Monday morning after a weekend frat party if they partied with goldfish, cheese doodles, yogurt, almonds and pistachios.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on March 12, 2014, 05:54:11 PM
Don't make me come over there and play Freddy Krueger with the shop vac, people...


on second thought, maybe your kids would like the playground to themselves after I've finished?

 :evil:


This is where I explain how long we spent house-hunting in this town for a house with a YARD suitable for a child to play in, isn't it?  Yeah-- the park was a total mess for her.  Unreliable from the get go, and always was.   :disappointed:  All because some people can't stand not to feed their kids continuously.  I mean-- the number of times I wiped down the slide with clorox wipes.... OMG.   :P  Nothing says "Hi!  I'm mentally ill.  What's your name?" quite like following your child around a play structure while you herd and wipe, herd and wipe.   

{shudders}  Sorry.  Total PTSD moment there.  Thus my offer to purge things with the shop vac. 
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on March 12, 2014, 05:59:52 PM
I'm better than I used to be, though.  I used to actively mutter about "purification by fire" and fantasize about having a backpack flame thrower just for occasions like this. 

Title: Re: Living with Food Allergies, FEB 2013
Post by: twinturbo on March 12, 2014, 07:25:49 PM
Usually we're able to deal with the occasional accidental spilled snack. This looks more like littering as if they're too lazy to use the picnic area and garbage can they just use the public park like a dump.

I lol'd at the description. So true.
Title: Re: Living with Food Allergies, FEB 2013
Post by: krasota on March 12, 2014, 07:53:48 PM
Walked onto a play surface yesterday and walked RIGHT BACK OFF.  Why?  Hard boiled egg smashed all over the place and being tracked by feet and hands.

Thank goodness DS didn't really want to play. 

(Climbing tower area at children's zoo within the Philly Zoo.)
Title: Re: Living with Food Allergies, FEB 2013
Post by: Mfamom on March 13, 2014, 06:27:17 AM
Congrats, Boo!  That is an amazing year for your DS with all the challenges !  Having all ds allergies pretty much ggone, its almost surreal to me that I don't have to worry about all the stuff I used to worry about.  It makes me realize just how much worrying I have done over the past 11 or 12 years! 
Title: Re: Living with Food Allergies, FEB 2013
Post by: MaryM on March 13, 2014, 06:53:46 AM
There is a 2nd grader on my block who has an iPhone....my nephew (17) had a very simple phone and never had it on or charged.  He got an iPhone for Christmas and always has it on.  DS getting phone when he goes to middle school.  It will probably be a very basic phone.

It's field trip season.  It stinks to have to check to make sure a nurse will be going on the trip.  If the school cannot get a nurse, then I will be going on the trip so DD can go. 
Title: Re: Living with Food Allergies, FEB 2013
Post by: twinturbo on March 13, 2014, 05:37:36 PM
Daily 3-hour picnics inside the public park sandbox. I capitulate! That's more than I can deal with. Nice to know the same 5-7 families are going to bogart the sandbox for themselves.

Is it petty that it disgusts me? I did grow up in places with icky cockroach populations. Maybe it's different here.
Title: Re: Living with Food Allergies, FEB 2013
Post by: starlight on March 14, 2014, 10:56:10 AM
Really don't think you'd want your kids in the sandbox, allergens or not....

http://nypress.com/kids-stay-away-from-sandboxes-doctors-say/
Title: Re: Living with Food Allergies, FEB 2013
Post by: GingerPye on March 14, 2014, 11:22:06 AM
LOL, yeah.  We have sand underneath our wooden playset --- I'd look out and see a neighbor kid in that sand.  Umm, get outta there, Honey ...... the neighborhood farm cats use that as a litter box.   :hiding: 

When the kids were little we had a sandbox but I kept it covered.  Even so, we replaced the sand on a regular basis. 
Title: Re: Living with Food Allergies, FEB 2013
Post by: twinturbo on March 14, 2014, 11:26:13 AM
Isn't that supposed to be our magical food allergy cure? Filth, parasites and fecal matter?
Title: Re: Living with Food Allergies, FEB 2013
Post by: spacecanada on March 19, 2014, 10:14:10 AM
Making everything from scratch means we have to clean mountains of dishes... My kitchen sink looked like Mount Everest last night.
Title: Re: Living with Food Allergies, FEB 2013
Post by: twinturbo on March 19, 2014, 10:57:55 AM
Living with allergens in house means buy a dishwasher with "NUKE" option.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on March 19, 2014, 11:19:46 AM
:rofl:


Also-- means explaining to others why "crowded and chaotic environment + little kids with food-food-food = this is me, wired like a capuchin monkey on speed," so don't take it too personally if I don't seem "relaxed and at-ease" in that setting-- it's not you, it's my food allergies.

Title: Re: Living with Food Allergies, FEB 2013
Post by: YouKnowWho on March 19, 2014, 08:08:15 PM
Living with allergens in house means buy a dishwasher with "NUKE" option.

I seriously researched one of those after DS2 was diagnosed being allergic to all beans, garlic, mustard, mushroom, peanuts, tree nuts and a few others that I cannot remember.  Because you know it wasn't enough to deal with the kid who was allergic to wheat, rye, barley, oats, rice, corn, eggs, dairy, soy, peanuts and tree nuts.

It may have been because I wanted to implode myself though  :hiding:
Title: Re: Living with Food Allergies, FEB 2013
Post by: YouKnowWho on March 21, 2014, 05:01:57 PM
I have a mom cold.  The reality is that is in all likelihood just allergies but I have been dealing with it since the end of February. I have not slept through the night or been to bed at a decent hour since I first developed bronchitis.  Bronchitis is gone and now the goo has moved to my head.  Right now, on my counter are four different forms of allergy medication in various strengths, Tylenol and kids Advil, antacids, steroids, cough syrup, two inhalers and six nasal sprays (3 OTC, 3 prescription) because 5 of the six members of the house are suffering.  DH just brought home 12 boxes of tissues.

My mom cold is now a man cold.  I am done.

More than anything, given that this is Lent - I would love to send the rest of the family to Captain D's and go to bed.  I am obviously not living with food allergies very well today or coping for that matter.
Title: Re: Living with Food Allergies, FEB 2013
Post by: LinksEtc on March 23, 2014, 08:11:23 PM
 :heart:  YKW

I hope you are feeling better.

-----------------


This is my 1000th post.   :)

Somewhere along the way, FA topics became so interesting to me.  I don't "need" this board the way I used to, but this place has a pull to it.  Maybe it's all you wonderful folks  :) .

Title: Re: Living with Food Allergies, FEB 2013
Post by: SilverLining on March 26, 2014, 10:55:24 AM
Daily 3-hour picnics inside the public park sandbox. I capitulate! That's more than I can deal with. Nice to know the same 5-7 families are going to bogart the sandbox for themselves.

Sandboxes in school yards and public playground around here are cat litter boxes.  It became an issue when my son was having bad reactions to insect bites at school.  We eventually figured out there were bugs in the sandbox, and they also found.....cat leavings.  I'm not a pet person, so I don't know if cats cover their poop or if it was some of the kids.  But regardless, buried cat droppings in the sand box.

Lovely place to eat.
Title: Re: Living with Food Allergies, FEB 2013
Post by: YouKnowWho on March 26, 2014, 07:47:05 PM
When people ask about cheap meal ideas, most people say pasta or PB&J.

Yeah, it's a different mindset when your pasta runs $5/bag and your bread is $6/loaf that is half the size of the cheapo loaf at Walmart.

And somewhere in your brain, you think it's perfectly acceptable to pay almost $10 for a pizza that is gluten and egg free and roughly the size of a Totinos.

#FA'sAin'tCheap
Title: Re: Living with Food Allergies, FEB 2013
Post by: spacecanada on March 31, 2014, 09:22:30 AM
Anaphylaxis-related PTSD nightmares last night; high anxiety and fearfulness this morning.  I wish it could be a quiet day at work to relax, but it's the first day of spring break camp.  I need a puppy or kitten to snuggle.  (At least there's plenty of those at work.)
Title: Re: Living with Food Allergies, FEB 2013
Post by: SilverLining on March 31, 2014, 10:34:30 AM
Did you recently have a reaction?   
Title: Re: Living with Food Allergies, FEB 2013
Post by: hezzier on March 31, 2014, 11:36:53 AM
Just saw the new epi pen commercial...it was good. 

Title: Re: Living with Food Allergies, FEB 2013
Post by: Ciel on March 31, 2014, 05:07:52 PM
A classmate said to me that I should take a handful of peanut butter and rub it on my face. Nice. Because the scent of a perfume was bothering me, she somehow thought pb would be a good solution. I still don't get it.
Another classmate sitting beside me also happens to have a peanut allergy. I couldn't laugh it off -- just pointed out that she was suggesting wiping out everyone on my side of the table. This is adult education btw.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on March 31, 2014, 06:00:47 PM
  :-/    Maybe afraid of the curve?

I have no idea why others feel some need to comment on this like that.
Title: Re: Living with Food Allergies, FEB 2013
Post by: spacecanada on March 31, 2014, 07:37:15 PM
Did you recently have a reaction?
Last year, but still struggling with it some days. When I get stressed or overwhelmed, even when the stress is not allergy-related, the post-trauma nightmares resurface.  (My GP knows about this and I am getting help.  It just sucks sometimes.)
Title: Re: Living with Food Allergies, FEB 2013
Post by: becca on March 31, 2014, 09:29:43 PM
 :grouphug: Space.  I understand stress and anxiety issues.  Sucks big time.  I hope you feel better. 
Title: Re: Living with Food Allergies, FEB 2013
Post by: SilverLining on March 31, 2014, 09:48:50 PM
Did you recently have a reaction?
Last year, but still struggling with it some days. When I get stressed or overwhelmed, even when the stress is not allergy-related, the post-trauma nightmares resurface.  (My GP knows about this and I am getting help.  It just sucks sometimes.)

Glad there wasn't a recent reaction.  Sorry you are going through this though.
Title: Re: Living with Food Allergies, FEB 2013
Post by: twinturbo on April 01, 2014, 02:34:56 PM
Right now I am unreasonably spiteful towards barley. And I used to LOVE barley.

I'm also on the verge of totally losing my s**t the next time someone excitedly shares their kid is on the GFCF diet, "too".
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on April 02, 2014, 06:42:17 PM
I'm feeling pretty spiteful too.

Toward dogs.

And dogs that eat peanut butter. 

Because apparently dogs > people who are allergic to peanuts.

Even in restaurants.
Title: Re: Living with Food Allergies, FEB 2013
Post by: Janelle205 on April 02, 2014, 08:31:49 PM
My allergy cup is exploding.

I have never had a contact reaction to mayo before.
Title: Re: Living with Food Allergies, FEB 2013
Post by: YouKnowWho on April 03, 2014, 09:13:25 AM
Pollen count is 2800 at home.  Which means next week is going to be evil (and typically when I get ill from the sheer amount of pollen as it skirts the 10K mark).

Can I convince DH to stay here one more week?

On a side note, I discovered this week that I never want to move to Louisville, Ky which is apparently located on the list of worst spring pollen blooms.
Title: Re: Living with Food Allergies, FEB 2013
Post by: Janelle205 on April 03, 2014, 02:42:00 PM
No one else will see this as good news, but I know folks here will understand.

Allergic reaction today for me pretty much confirms that yesterday's hives were a result of a full allergy cup and not food allergies getting worse.  Which is nice to know.

Bad news is I have to cross another fruit off my list at least until tree pollen season is over, and I really don't have that many fruits left.  But it could be much worse.  Need to pick up a box of cheap disposable gloves that I can use for food prep in the kitchen.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on April 04, 2014, 10:13:39 AM
That is good news, Janelle... (Well, sort of.)

Title: Re: Living with Food Allergies, FEB 2013
Post by: GoingNuts on April 04, 2014, 02:57:26 PM
Janelle, I ate a Mango yesterday and was itchy for hours.  Nope, no more mangoes for a couple of months until pollen levels go down.  :disappointed:
Title: Re: Living with Food Allergies, FEB 2013
Post by: Janelle205 on April 04, 2014, 08:37:59 PM
The weird part is that I had actually eaten some kiwi a few days ago with no problem.  Then just peeled several for DH and DSD, and hives EVERYWHERE.  I didn't prep anything else, and the kiwis were actually from the same clamshell container that I had eaten from days before.

Tonight I'm sorely tempted to drill a hole in my face to relieve the sinus pressure though, so it has to be spring pollen.
Title: Re: Living with Food Allergies, FEB 2013
Post by: MaryM on April 05, 2014, 02:32:27 PM
After many years in little league, I finally checked on a few things at the snack bar.  The hot dogs & rolls are safe & the hot dogs are the only thing cooked on the spinning grill!!!  The manager called the soft pretzel supplier to check on the ingredients.  They are safe too!  The pretzel guy is going to send over a nutritional label.  Made my day!
Title: Re: Living with Food Allergies, FEB 2013
Post by: twinturbo on April 06, 2014, 04:14:26 PM
I need to not go down the what-if road that should DS2 outgrow wheat anaphylaxis what about exercised induced wheat dependent anaphylaxis.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on April 06, 2014, 04:25:05 PM
Hasn't been an issue here, fwiw.  Then again, we've never seen ana that was conclusively attributable to anything besides egg, nut, or peanut.    Just possible attribution.
Title: Re: Living with Food Allergies, FEB 2013
Post by: notashrimpwimp on April 07, 2014, 05:48:38 AM
The hardest part is discerning what constitutes "exercise", as I've discovered. It's hard enough explaining an allergy, let alone explaining the danger of eating food (milk for me) and doing anything strenuous. It's gotten to the point that my fiancé, ever so kindly, advises that I forgo milk if I plan to do or go anywhere.  :-/

Living with allergies means that large groups of people present challenges that test one's wit and adaptability. While standing in line, I discovered a man noshing on walnuts. Later, as I sat in on a presentation, I began to feel that itchy, burning sensation and quickly left the area. I don't know what caused the problem, but I do know I developed hives over my body.
Title: Re: Living with Food Allergies, FEB 2013
Post by: Janelle205 on April 09, 2014, 02:54:34 PM
Is it weird that I keep thinking that I need to go back to Wisconsin because I am running out of my safe stash of surimi?

ETA: Right after I posted this, it occurred to me I have a mental list of things to stock up on in different states that I commonly visit because it is the only place that I can get certain safe foods.  Vacationing with food allergies.
Title: Re: Living with Food Allergies, FEB 2013
Post by: YouKnowWho on April 09, 2014, 04:17:50 PM
This is me, when we go to NJ - those with gluten allergies don't have to pay the arm and the leg that we do in the south.  Not to mention the selection rocks compared to here.
Title: Re: Living with Food Allergies, FEB 2013
Post by: Gray on April 09, 2014, 05:04:14 PM
This is like a bad joke.

Cr*p

I literally just got done touching base with the allergist telling her dd's been doing great and no rxn since at least Sept.

Of course, tonight, itching tongue and what looked like a hive.

Burying head in sand, hope for full tolerance fading.

Confession - I did skip a dose this week.

 :pout:

What timing.  Unbelievable.



Title: Re: Living with Food Allergies, FEB 2013
Post by: Janelle205 on April 09, 2014, 05:21:31 PM
YKW, the funny thing is that none of the things I get from other places are 'specialty' foods - it just happens that they are the only kind that I can have.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on April 09, 2014, 06:29:13 PM
Gray-- pollen season is nearly upon us all.  We're in full swing here-- VERY high levels of tree pollen for the past 2.5 weeks.

DD is having trouble with most raw fruit again.

 :-[
Title: Re: Living with Food Allergies, FEB 2013
Post by: Gray on April 09, 2014, 06:45:41 PM
Gray-- pollen season is nearly upon us all.  We're in full swing here-- VERY high levels of tree pollen for the past 2.5 weeks.

DD is having trouble with most raw fruit again.

 :-[


In the past, I don't think her environmental allergens tested particularly high.

I'm thinking that it was probably from not being consistent with the dose, but who knows.

It's just been so long since I'd seen any reaction.  The hope starts to build a bit that it's fully resolved.

Still, things are so much better than they used to be, so I'm thankful for that.

Well, we have our follow-up this summer so it should be interesting to see what any testing looks like.

I'm confident that they will do what is best for dd.




Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on April 09, 2014, 11:02:51 PM
You know that you have food allergies when you see this in an e-mail:

Quote
Please note: This event will be held in the Museum’s galleries where food is not permitted. Please plan on having dinner prior to your arrival or enjoy a quick bite at one of the Museum’s neighboring restaurants or food carts.

and it makes you feel happy-happy-happy, and you can almost feel the stress melting away as you think...

there's no place like an art museum... there's no place like an art museum.. Ahhhhhhh   :heart:
Title: Re: Living with Food Allergies, FEB 2013
Post by: GingerPye on April 10, 2014, 08:16:57 AM
 :thumbsup:
Title: Re: Living with Food Allergies, FEB 2013
Post by: sneaker on April 11, 2014, 11:30:54 AM
CMdeux, that is so, so true!!!  You really got that just right how a FA person or family would feel.

Title: Re: Living with Food Allergies, FEB 2013
Post by: spacecanada on April 11, 2014, 01:09:27 PM
Makes me feel like visiting an art museum in the near future.  YAY.   :happydance:
Title: Re: Living with Food Allergies, FEB 2013
Post by: becca on April 12, 2014, 06:21:49 PM
Pretty much any museum, though at ones that attract kids, people flaunt the rules with snacks for toddlers.  Alwyay chafed me.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on April 12, 2014, 06:38:31 PM
Docents in art museums tend to be pretty hard core about it.  LOVE that.   :heart:

Might explain why my 6yo liked MoMA so much better than Disneyland, too.   :-[

Title: Re: Living with Food Allergies, FEB 2013
Post by: Janelle205 on April 14, 2014, 01:29:31 PM
Haha.

You really thought that I would eat something that you made in your house? 

That's funny.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on April 15, 2014, 06:50:23 PM
Discovering that you (and more critically, your child) have something in common with Miley Cyrus makes you feel...



conflicted.



Spoiler (click to show/hide)
Title: Re: Living with Food Allergies, FEB 2013
Post by: LinksEtc on April 15, 2014, 07:12:01 PM
First, of course, I hope that she is ok.

-----------



Parts of her song "We Can't Stop" remind me of FAS  :misspeak:

Ex
Quote
don't take nothing from nobody

Quote
It's our party, we can say what we want

Granted, I don't usually listen to her stuff, but since you brought it up ...

 :)



Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on April 15, 2014, 10:27:22 PM
I can't stop.
Title: Re: Living with Food Allergies, FEB 2013
Post by: LinksEtc on April 16, 2014, 05:53:25 AM
I won't stop.
Title: Re: Living with Food Allergies, FEB 2013
Post by: SilverLining on April 16, 2014, 07:27:01 AM
Discovering that you (and more critically, your child) have something in common with Miley Cyrus makes you feel...



conflicted.



Spoiler (click to show/hide)


Maybe an allergic reaction. Maybe not.
Title: Re: Living with Food Allergies, FEB 2013
Post by: becca on April 16, 2014, 07:59:16 AM
Yeah, I also wonder SL, she has some history of cancelling appearances.  One was in Boston this winter.  Weather was balmed, but every other act on the same tour made it here, no problems.  They were all in NYC the night before. 
Title: Re: Living with Food Allergies, FEB 2013
Post by: twinturbo on April 16, 2014, 08:42:44 AM
I think publicists use "drug reaction" as a generic cover. A while back someone posted about Bieber having a reported allergic reaction to drug hospital visit. Miley makes no illusions she parties with substances it's part of her public overcompensation against her Disney days.

She may have had a bad reaction to antibiotics. Medically that sort of puts her in the larger population allergic to some meds, not LTFA.

No hate on me for her transformation or whatever it was. I had no idea what she did before Bangerz but there's a couple of good tunes. She's got a real head for marketing for her age.

More for the interested reader.
Spoiler (click to show/hide)

My on topic contribution. Our allergist is chomping at the bit to get DS1 on some tree nut challenges like he's just PSYCHED for it. Enthusiasm is good, I suppose.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on April 16, 2014, 09:40:07 AM
He does tend to do that, doesn't he? 

 ;D
Title: Re: Living with Food Allergies, FEB 2013
Post by: SilverLining on April 16, 2014, 03:45:58 PM
Yeah, I also wonder SL, she has some history of cancelling appearances.  One was in Boston this winter.  Weather was balmed, but every other act on the same tour made it here, no problems.  They were all in NYC the night before.

I'm thinking her "reaction" is likely of the overdose kind.  She is heading for an implosion.  She apparently has been self-medicating to deal with depression, going non-stop, and recently had a flu which she may not have completely recovered from.  It's the antibiotic for the flu being blamed for the allergic reaction. 

And remember, two years ago she went gluten free because of a a gluten and lactose allergy.  She tweeted: “The change in your skin, phyisical and mental health is amazing! U won't go back!”

I don't immediately assume it's an allergic reaction just because she says it is. 

While eliminating an allergen can have positive effects on your skin, physical and mental health...would you follow that with "U won't go back!" ? 
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on April 16, 2014, 05:01:02 PM
Well, I have no intention of "going back" to eating shellfish.  :rofl:

Title: Re: Living with Food Allergies, FEB 2013
Post by: YouKnowWho on April 18, 2014, 08:14:29 AM
You know that you have food allergies when you see this in an e-mail:

Quote
Please note: This event will be held in the Museum’s galleries where food is not permitted. Please plan on having dinner prior to your arrival or enjoy a quick bite at one of the Museum’s neighboring restaurants or food carts.

and it makes you feel happy-happy-happy, and you can almost feel the stress melting away as you think...

there's no place like an art museum... there's no place like an art museum.. Ahhhhhhh   :heart:

I used to feel that way about the science museum we just joined.  Until they announced their Block Party complete with food trucks and craft beer.   :rant:
Title: Re: Living with Food Allergies, FEB 2013
Post by: SilverLining on April 18, 2014, 08:41:21 AM
http://www.cnn.com/2014/04/17/showbiz/miley-cyrus-hospitalized/index.html?hpt=hp_t2

Quote
Miley was suffering from a sinus infection during her tour in N.C. a week ago. She was prescribed the antibiotic Cephalexin which she has now suffered an extreme allergic reaction to," the statement said. "This type of extreme reaction can last from five to 27 days in these types


What type of extreme reaction is that?  Has anyone EVER heard if it?
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on April 18, 2014, 10:18:46 AM
A legitimate reaction to an antibiotic can last a while, actually.

Although, to be fair, at 21 days, this is sounding a lot more like detox from something other than an allergen, if you KWIM.

Title: Re: Living with Food Allergies, FEB 2013
Post by: LinksEtc on April 18, 2014, 10:29:14 AM
I was just thinking how we've seen quite a few different allergists/docs over the years b/c of moving and stuff, but this place has been a constant source of support for us almost from the very start ... and not just for FA, but for asthma and other health issues.


 :heart:
Title: Re: Living with Food Allergies, FEB 2013
Post by: starlight on April 18, 2014, 10:35:37 AM
[url]http://www.cnn.com/2014/04/17/showbiz/miley-cyrus-hospitalized/index.html?hpt=hp_t2[/url]

Quote
Miley was suffering from a sinus infection during her tour in N.C. a week ago. She was prescribed the antibiotic Cephalexin which she has now suffered an extreme allergic reaction to," the statement said. "This type of extreme reaction can last from five to 27 days in these types


What type of extreme reaction is that?  Has anyone EVER heard if it?


Maybe they're purposely confusing allergic reaction with C.diff? Don't want her fans to know she's got uncontrollable diarrhea?
Title: Re: Living with Food Allergies, FEB 2013
Post by: YouKnowWho on April 18, 2014, 12:59:47 PM
Drugs have always caused extreme biphasic reactions for me that lasted 4-6 weeks (and beyond if you think about the allergy cup full issues).

My initial thought was wow - she gets 28 days and I am lucky if we can stay the requisite four hours with a food allergy reaction.  But then it dawned on me, oh drug rxn.  BTDT.
Title: Re: Living with Food Allergies, FEB 2013
Post by: twinturbo on April 18, 2014, 08:14:45 PM
https://twitter.com/georgetakei/status/457228132870000640
Title: Re: Living with Food Allergies, FEB 2013
Post by: TabiCat on April 20, 2014, 03:14:51 PM
I don't know what to make of this one. DS epi-ed himself last night. He broke out with hives, large ugly hives. They erupted very quickly. Instead of coming to one of us he used his epi pen and then came to us with the pen. He hadn't eaten much except candy from his easter basket from MIL. I think it was more likely to be contact from playing out in the grass.  He was out side with dd and FIL then came in and had a couple of pieces of candy and went to the game/room. 10 to 15 mins later he was back covered in hives and holding the pen out to dad. I don't know that the epi was really needed...
Staff at the hospital seemed to think we were negligent in allowing him access to them. He has worn his own pack foryears now. I thought we were just trying to train him well. His dr came to the hospital and told him he used the pen just right and was brave not to be afraid of it BUT that next time he has a reaction his FIRST job is to tell a grown-up.

No mention on FB please.
Title: Re: Living with Food Allergies, FEB 2013
Post by: twinturbo on April 20, 2014, 04:03:34 PM
There's no call for docs to Monday morning quarterback this. You know he'll use it in the correct manner he just needs some fine tuning on protocol.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on April 20, 2014, 04:15:11 PM
Agreed.  The greater risk is always under-utilization, and he did a good job assessing symptoms and using correctly.  How many times do we realize that we're looking for causation when we ought to just be following the procedure and not worrying about HOW, but what.

Good for him!!     :heart:
Title: Re: Living with Food Allergies, FEB 2013
Post by: Janelle205 on April 20, 2014, 05:07:20 PM
Agreed with the others that the hospital staff are being a little bit ridiculous on this.  I am glad that I had a great ER doc the last time I had to Epi - he came in and said: "Congratulations, you saved your life today." 

And as someone who has had mental symptoms during a reaction, it is sometimes really hard to make that call for yourself, and better to err on the side of giving Epi rather than not.  I had one reaction where I was really, really confused up to the point where the "I am going to die" feeling kicked in.
Title: Re: Living with Food Allergies, FEB 2013
Post by: SilverLining on April 20, 2014, 06:38:36 PM
I agree with everyone else.  Your son did right and so did you.

How is he today?
Title: Re: Living with Food Allergies, FEB 2013
Post by: TabiCat on April 20, 2014, 06:51:38 PM
VERY hyper ;)
Title: Re: Living with Food Allergies, FEB 2013
Post by: YouKnowWho on April 20, 2014, 09:12:01 PM
Tell him he has a large contingent of allergy moms and sufferers that said he did the right thing!  This should matter way more than an ER dr that sees a few allergic reactions (and are often clueless about when an epi pen is needed, ie difficulty breathing only).  If he felt he needed the pen, he did the right thing and he needs to learn that what he feels is WAY more important than how others who have no idea how he is feeling inside.

Proud of him - it is scary to use that pen!!
Title: Re: Living with Food Allergies, FEB 2013
Post by: PurpleCat on April 21, 2014, 06:10:48 AM
Two thumbs up from me too! 

He did not question or wait and he did what he was taught to do - he knew something was not right! 

And those ER people, in our experience, have not enough experience dealing with anaphylaxis. 
Title: Re: Living with Food Allergies, FEB 2013
Post by: TabiCat on April 21, 2014, 10:35:00 AM
The thing is they thought it was crazy that he had easy access to them. " You know it's really important to keep drugs and medication out for the reach of children <pause > like him..." Honestly I wouldn't be surprised if I end up with a call to family services. Like he had just been playing around with them. I tried to explain that he has been trained to carry it and to use it. I just never really dreamed he would be the first of us to actually use it. 

His Dr (our family doc) came to the hospital and told him he did a good job and he was proud of him for not being afraid. His concern was to get DS to tell a grown up. He was afraid if something went wrong in a reaction and DS was alone we wouldn't know he was in trouble.

I no longer doubt that it was needed but I am wondering what happened. He had trouble telling us what he was feeling that night. Today he was telling his one-2-one that he had hives and was HOT and his head was dizzy. It is sounding less and less like contact with weeds and more like ingestion. He ate candy that we checked and approved but MIL put unsafe stuff in DD's basket because one she thinks we are over protective and two " he knows not to eat peanuts". I wonder if he took something from her basket and no one saw it. Either that or we have been too lose with our comfort zone.

They ordered blood work.
Title: Re: Living with Food Allergies, FEB 2013
Post by: twinturbo on April 21, 2014, 10:40:55 AM
I tell ER/EMS "That sounds like a great conversation you could have with our allergist, Dr. Allergist, about his orders and current best practices." I do the same when they complain my kids can't talk. Take it up with the SLP.
Title: Re: Living with Food Allergies, FEB 2013
Post by: LinksEtc on April 21, 2014, 11:14:15 AM
I agree with TT ... for things like this, fall back on your physician's authorization to self-carry/self-admin. 

I'm glad he is ok.    :grouphug:

Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on April 21, 2014, 12:16:04 PM
That is pretty much amazing. The first time he had it, HE did it. He knew and he did it. As someone who has not only had to administer it to DS bit also to myself, I know show very brave your DS is. Even when I've known I've needed it, I wanted to hear confirmation from DH on the phone. Your DS--wow. Just wow.

What bothers me is that they told him to go tell y'all first. He might not have time to so that in a reaction. Better for him not to have the self doubt of needing to ask first. He did comes d tell you, right?  Afterward?  But the thing is--he was able to come tell you. In an emergency situation, without the Epi that opportunity might be lost

Could his safe candy have been prepackaged with unsafe stuff, contaminating the wrappers of the safe candy?
Title: Re: Living with Food Allergies, FEB 2013
Post by: TabiCat on April 21, 2014, 02:33:32 PM
Honestly I think it's a function of his literal thinking.

This+that = this

I would have spent several minutes trying to decide. He has difficultly expressing how he feels, add in that we didn't see any ingestion, I likely would have waited too long.
Title: Re: Living with Food Allergies, FEB 2013
Post by: YouKnowWho on April 21, 2014, 07:08:09 PM
Honestly I think it's a function of his literal thinking.

This+that = this

I would have spent several minutes trying to decide. He has difficultly expressing how he feels, add in that we didn't see any ingestion, I likely would have waited too long.

Which is why my first thought is to applaud him - he may not have been able to verbalize it immediately but he knew he needed the epi pen.  That is AWESOME!
Title: Re: Living with Food Allergies, FEB 2013
Post by: Janelle205 on April 22, 2014, 08:55:34 AM
This is a living with asthma comment, but I'm going to assume that is ok.  I have two asthma meds that come in sealed bottles that have to be drawn with a syringe.  Since I don't actually inject them, I can reuse a syringe several times before it has to be tossed.

Occasionally with food allergies and asthma, you have those moments where you realize that your life is different than that of 'normal' people.  I had one of those today.  I was trying to draw a med while coughing, and slipped and jabbed myself pretty hard.  I was annoyed, but not because it hurt and I was bleeding.  Annoyed because that meant that the new syringe was contaminated and had to be tossed.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on April 22, 2014, 09:55:33 AM
I know exactly what you mean, Janelle-- it's one of those moments when you realize that this thought, never mind not occurring to someone else in the first place--  wouldn't even make SENSE to anyone else.   :pout:



Honestly I think it's a function of his literal thinking.

This+that = this



I would have spent several minutes trying to decide. He has difficultly expressing how he feels, add in that we didn't see any ingestion, I likely would have waited too long.

Which is why my first thought is to applaud him - he may not have been able to verbalize it immediately but he knew he needed the epi pen.  That is AWESOME!



Exactly-- this is one instance in which that very literalism is a good thing.  :yes:
Title: Re: Living with Food Allergies, FEB 2013
Post by: spacecanada on April 22, 2014, 10:00:29 AM
TabiCat, you have one awesome kid!  Great job on using the EpiPen properly and (then) seeking help from an adult.   :thumbsup:

As an adult who can recall the grading chart by memory and frequently refer to it for random symptoms, I still find it hard to know when to Epi.  Kudos to him.  I admire his self-recognition and treatment of symptoms.   :yes:
Title: Re: Living with Food Allergies, FEB 2013
Post by: GoingNuts on April 22, 2014, 01:54:49 PM
At work, must be quick. Tabi, your son is awesome. What a smart, brave kiddo.  :grouphug: to both of you.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on April 23, 2014, 07:54:32 PM
The fact that my spouse just booked a flight on American means that I'm wondering uneasily whether or not I should, you know-- cover the seats of the car... and isolate his luggage....

 :-/

Kind of hate thinking things like that.  Oh sure-- it SEEMS paranoid.  And how crappy would I feel for NOT doing it now that the risk has occurred to me??  How much worse would I feel if DD had a problem because I didn't??    :misspeak:

 :insane:
Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on April 23, 2014, 08:32:31 PM
I have a thread about that in OT.

I heart American.  If course DS is not allergic to treenuts. But American only serves tn in first class. And no peanuts. :)

I'd pick American over United any day. We've flown American and US Air a lot.
Title: Re: Living with Food Allergies, FEB 2013
Post by: LinksEtc on April 24, 2014, 04:10:18 PM
I need to have a small procedure done.  The woman asks me if I'm allergic to contrast dye ... I tell her not that I know of, but I don't remember if I've ever had it ...

and this is when I think you fine folks  ...

She tells me not to worry because they have the Benadryl ready.  I couldn't resist ... I mentioned my understanding that Benadryl doesn't stop ana, epi recommended.  She said they used to give epi in those cases, but stopped due to worries of heart issues.  Then she reassured me that they do have a crash cart, but they don't like to talk about that ... Lol, is it wrong that I find this funny in a warped way.

Hmmm ... warm, fuzzy feelings indeed  ...

Is it wrong that I think I'll take my chances rather than risk annoying a doc with a printout of the NIH recommendations?     :misspeak:

Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on April 24, 2014, 04:40:54 PM
I had a bad reaction to contrast dye. I felt funny during the procedure. Spacey. But two houris or so afterward I got horrible hives that lasted for days. It probably wasn't the shellfish. From what I've read it was likely the overall huge histamine load.
Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on April 24, 2014, 04:46:57 PM
So I'm going to a meeting. I typically buy a can of progresso soup or something to have instead of the catered lunch but sometimes can eat a few things.  They know about my allergies and I also mentioned them a month ago. They've often gone out of the way to accommodate during cocktail parties, making things PF when DS came.  And there is always a vegetarian option at every single event. It's always that way here. Always. (DS loves this place and neighborhood because they speak vegetarian so fluently).

But I emailed yesterday to let the person coordinating this know I'd be picking something up at the store once there to have tomorrow.

She said they were mindful of my allergies, so I might be able to eat the catered stuff. I ask who was doing lunch and got a reply on my way to the airport.

We are eating this:

Pad Se Eu Chicken -

 

Pad Woon Sen Chicken-

 

Chicken Fried Rice

 

Drunken Noodle

 

Pad Thai Tofu (no egg)



From an Asian restaurant.


:rofl: 

I had to note. Bless them.  I am sure they tried.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on April 24, 2014, 05:25:15 PM
OH my.

 :misspeak:

I like your plan better and better, I must say.

Title: Re: Living with Food Allergies, FEB 2013
Post by: LinksEtc on April 24, 2014, 07:18:11 PM
I had a bad reaction to contrast dye. I felt funny during the procedure. Spacey. But two houris or so afterward I got horrible hives that lasted for days. It probably wasn't the shellfish. From what I've read it was likely the overall huge histamine load.


Shellfish problems and iodinated contrast media (“x-ray dye”)
http://asthmaallergieschildren.com/2010/08/04/shellfish-problems-and-iodinated-contrast-media-“x-ray-dye”/
Quote
later studies were done that showed no connection between a patient’s shrimp “allergy” and the incidence of contrast reactions



Anyway ... I'm not really worried ... it's just this reliance on "Benadryl" makes me want to use this:

:paddle:

----------

Yeah, regarding your other post, I agree that your own food is probably the safer option!
Title: Re: Living with Food Allergies, FEB 2013
Post by: SilverLining on April 24, 2014, 07:32:04 PM

She tells me not to worry because they have the Benadryl ready.  I couldn't resist ... I mentioned my understanding that Benadryl doesn't stop ana, epi recommended.  She said they used to give epi in those cases, but stopped due to worries of heart issues.  Then she reassured me that they do have a crash cart, but they don't like to talk about that ... Lol, is it wrong that I find this funny in a warped way.

Hmmm ... warm, fuzzy feelings indeed  ...

Is it wrong that I think I'll take my chances rather than risk annoying a doc with a printout of the NIH recommendations?     :misspeak:

A medical facility. That doesn't want to use epi IF WARRANTED because of worries of a possible heart issue.  But, they have and will use a crash cart.

How many things are wrong with this picture?

Any possibility of getting it done elsewhere? 
Title: Re: Living with Food Allergies, FEB 2013
Post by: SilverLining on April 24, 2014, 07:36:32 PM
This does not even qualify as a bump in the road.  It was....well, it was like a slap in the face that pulled me back into reality.

I was doing one of those "what kind of......are you" silly questionnaire things on Facebook.  It was what Stephen. King book are you....I had to do it.   ;D  The first question was what murder weapon are you.....so I went to select balloon (of course).  And I couldn't.  It was a silly little thing....a silly game.  And I couldn't 'to select balloon because THAT balloon is a normal (latex) balloon which really could be a murder weapon to my son.  So... I could not pick it.

Dumb, I know.
Title: Re: Living with Food Allergies, FEB 2013
Post by: LinksEtc on April 24, 2014, 08:07:21 PM
A medical facility. That doesn't want to use epi IF WARRANTED because of worries of a possible heart issue.  But, they have and will use a crash cart.

How many things are wrong with this picture?

Any possibility of getting it done elsewhere?

If I was a highly allergic individual (so far - I'm not), I'd probably go elsewhere ... but honestly, they are very good diagnostically regarding this particular issue and that is what I need.

I wish there was a way I could get through to them for others ... but I don't have it in me to try this time.

Title: Re: Living with Food Allergies, FEB 2013
Post by: SilverLining on April 24, 2014, 09:02:14 PM
We all have to pick our battles.

Not sure what you are getting the test done for (not asking if you haven't chosen to share) but I hope everything turns out fine. :)
Title: Re: Living with Food Allergies, FEB 2013
Post by: LinksEtc on April 24, 2014, 09:25:44 PM
Not sure what you are getting the test done for (not asking if you haven't chosen to share) but I hope everything turns out fine. :)

Thanks   :heart:.

Things most likely will be fine.
Title: Re: Living with Food Allergies, FEB 2013
Post by: PurpleCat on April 26, 2014, 07:11:56 AM
This week was school vacation and I took DD to one restaurant with her brothers, and then yesterday to another with one of her friends. 

Both times she pulled out her chef's card to start speaking with the wait person and I excused myself to the ladies room....la la la.....for a bit, and then returned to find she had done an excellent job herself and the staff were off discussing options with the chef or manager. 

I stayed out of the discussions and only once DD turned to me for advice - it was a bread and sesame concern.  Since sesame was the cause of her last anapylyaxis, I totally understand her hesitation and guided her to make a good choice.  Both meals and service were fantastic!

Continuing to forge ahead to her independence.  We were joking around (sort of, cause it's true) that she needs a Spock Mind Meld with me to get all the stuff out of my brain and into hers!
Title: Re: Living with Food Allergies, FEB 2013
Post by: TabiCat on April 26, 2014, 09:04:38 PM
DH and I were in a neighboring city without kids this AM. We ended up invited out to lunch by some that could turn into a very important contact for DH. Anyway we went to a type of place we haven't been in years due to DS allergies not just the type or food but also the method of serving. I enjoyed my food A LOT but everywhere I looked all I could think was that a major cross contamination risk. I found it ironic what stands out to me now.
Title: Re: Living with Food Allergies, FEB 2013
Post by: LinksEtc on May 03, 2014, 05:12:27 PM
I hate asthma.

I knew dd had a virus & we stepped up the medicine this morning ... but she had a great day, playing outside with friends, horseback riding ...

then she goes downhill so fast.  Ever since she was a baby ... when she gets like this, she does not want to separate from me.

 :-[


Title: Re: Living with Food Allergies, FEB 2013
Post by: TabiCat on May 03, 2014, 08:13:34 PM
 :heart: :grouphug: hope she recovers soon
Title: Re: Living with Food Allergies, FEB 2013
Post by: LinksEtc on May 03, 2014, 09:56:28 PM
Thanks   :heart:
Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on May 03, 2014, 10:53:38 PM
Oh yikes. I hope tomorrow is a better day for her. 
Title: Re: Living with Food Allergies, FEB 2013
Post by: twinturbo on May 03, 2014, 11:07:56 PM
 :heart:
Title: Re: Living with Food Allergies, FEB 2013
Post by: Janelle205 on May 04, 2014, 06:15:17 PM
Hope she is feeling better today, Links.  I hate asthma too.

I don't know if you have one, but using a pulse ox has really helped me as well.  I've kind of 'gotten used to' a lot of the early warning symptoms, so that helps me to see that things are going bad.  I ordered mine off amazon, and it wasn't very expensive.  I was a little worried about the quality at first, so I ended up getting the same one that my doctor uses in her office.
Title: Re: Living with Food Allergies, FEB 2013
Post by: LinksEtc on May 04, 2014, 07:28:57 PM
Thanks everyone.

She's still sick, but better than last night.  She's been watching Netflix all day  :).

We don't have a pulse ox ... it's probably not something that I would get unless her docs thought it was necessary.  Her current pulmo has me bring her in every few months and they really do a good job monitoring her asthma. 

Really, dd hardly ever shows any signs of having asthma except when she's sick.  Her asthma is much better controlled than when she was younger.

She's such a sweetheart (yes, I'm biased) ... but I think you all would  :heart: her.

Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on May 07, 2014, 05:22:53 PM
Oh my-- I hope things are well now at your house, Links.   :heart:


I just searched out this thread to note that living with food allergies means...


No good ever comes of a conversation starter that begins with...


"I don't know how you feel about alternative medicine, but--"



I cringe inside and think "don't-say-it-don't-say-it-don't-say-it" particularly when the word "chiropractic" is mentioned.

Ai yi yi.  I want to like people.  I do.  But when they imply that I just must not really want my daughter's allergies to get better... well, it's hard to take that particularly well, YK?

 :-[
Title: Re: Living with Food Allergies, FEB 2013
Post by: LinksEtc on May 07, 2014, 05:55:43 PM
Yes, she's great again ... thanks.  :heart:
Title: Re: Living with Food Allergies, FEB 2013
Post by: Janelle205 on May 07, 2014, 07:33:03 PM
Bah to the chiro-wack.

I have had someone say those specific words to me: "It just seems like you must not really want to get better."  This felt particularly appropriate, since said person had just heard from my husband about how I had called over 20 pharmacies in 3 states and driven an hour and a half to get myself a certain medication.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on May 07, 2014, 08:07:43 PM
Yeah-- what I really resent is that LTFA means that when people say things like this to me, no matter how well-meaning, it's a barrier in my mind forever-- it's truly a black mark against them in my heart and mind from there on out, no matter how much I like them otherwise.  {sigh}

I could otherwise totally just shrug it off.  Really-- I'm that kind of person.  I can just smile while I'm thinking "Wow, that sounds like utter bull****" and rationalize it as 'well, it works for you, so who am I to judge...'

But not anymore.  And this was someone that I need to get along well with, potentially, and someone that I felt utterly at ease with and liked VERY much otherwise.  It was a serious bummer.  :-[  Complete with the personal testimonial about how awesome NAET was and how well it worked for them personally. 

Which just provides me with that moment of

"Oh, I see.  Well.  I think we're done here."

Title: Re: Living with Food Allergies, FEB 2013
Post by: LinksEtc on May 09, 2014, 07:10:41 PM
.
Title: Re: Living with Food Allergies, FEB 2013
Post by: PurpleCat on May 12, 2014, 11:53:34 AM
x
Title: Re: Living with Food Allergies, FEB 2013
Post by: Janelle205 on May 13, 2014, 02:38:58 PM
On a busy road at 45 mph is NOT a great time to discover that there is a biting insect in your car.  Especially if you have had anaphylactic reactions to this particular species. 

I managed to flick it outside the car with a James Blunt CD.
Title: Re: Living with Food Allergies, FEB 2013
Post by: twinturbo on May 27, 2014, 09:03:42 PM
DS1 has been carrying an Auvi-Q in his back pocket occasionally. First step to self-carry.  :thumbsup:
Title: Re: Living with Food Allergies, FEB 2013
Post by: SilverLining on May 29, 2014, 07:57:18 PM
TT  :thumbsup:
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on May 31, 2014, 08:47:11 PM
Two things--

realizing as you're packing an evening bag that in fact, you DON'T happen to have a set of epis that isn't past the technical expiration date (though all probably still plenty good, given that some of them have been sitting in a ziploc baggie on a shelf at home as "backup" pairs for the past year)....


and opening up a corsage to discover that the florist oh-so-thoughtfully includes a little something extra sweet...


An ALMOND Hershey Kiss.   ~)   :dunce:
Title: Re: Living with Food Allergies, FEB 2013
Post by: spacecanada on June 10, 2014, 10:59:28 AM
When dealing with an animal's medical emergency (of which I probably panicked far more than what was due - the vet says the kittens will be fine), reading a positive article about living with food allergies seems to have a calming effect.  (Probably because it's familiar.)  *sigh* 
Title: Re: Living with Food Allergies, FEB 2013
Post by: Gray on June 16, 2014, 05:39:06 PM
Interesting.

DD's latest blood test results came back a class 2 (moderate).  She has always had negative/equivocal blood tests with large SPTs.  She had to pass a challenge and start eating the food (and reacting) before it showed up on the blood test.  :D 

Is this a coincidence?  Sure, it could be, but my intuition/gut says not.  Well, if there is something to be learned from this odd situation, I am in a good place for that to happen.
Title: Re: Living with Food Allergies, FEB 2013
Post by: spacecanada on June 16, 2014, 09:05:50 PM
The assigned camp cooks for our weekend camp refused to cook for special diets and allergies.  They were going to feed allergens to children with declared allergies.  (Thank God I realised it before anyone ate anything.)  My weekend plans were scrapped and I became camp cook for the 20 girls with special diets.  I may need a month or two (or more) to recover from the situation.  Not a pleasant situation to be tossed into, especially when recovering from PTSD due to anaphylaxis.  Yay, the nightmares are back.  Thanks.  :rant:

On the flip side, we had many special diets kids who were tickled pink to have so much safe food at camp.  And our cupcakes were significantly better than the ones everyone else had. 
Title: Re: Living with Food Allergies, FEB 2013
Post by: LinksEtc on June 16, 2014, 09:48:46 PM
The assigned camp cooks for our weekend camp refused to cook for special diets and allergies.  They were going to feed allergens to children with declared allergies.  (Thank God I realised it before anyone ate anything.) 

 :o

 :disappointed:


You may have saved somebody's life.  I can't believe they were going to do that.

Title: Re: Living with Food Allergies, FEB 2013
Post by: GoingNuts on June 17, 2014, 06:07:23 AM
Yikes spacecanada, that is really something.  What if you were unavailable/unwilling to fill in?  What kind of camp is this?
Title: Re: Living with Food Allergies, FEB 2013
Post by: spacecanada on June 17, 2014, 12:39:38 PM
It was a Girl Guide camp, sad to say.  I was supposed to be running another activity at said camp, not in the kitchen at all.  I made up the special diets menu (as to which ingredients had to be used and who could eat what) but they mixed everything together, with no consideration that some participants couldn't eat some of those special diet menu items.  (i.e. the GF pretzels contained sesame, and were in the bag for the participant with life-threatening sesame allergy; we had other pretzels containing wheat but no sesame).  They didn't believe me when I said they could have killed a child, and refused to learn how to read labels or make accommodations.  At that point, I desperately wanted to go home (I was furious) but knew I had to step up as cook to keep others safe.  I don't want to think about what would have happened if I wasn't there to step in.

For someone who is very involved in Guiding, I now need to take a break from it.  And to think one of these apathetic cooks, the one who was most vocal about her unwillingness to accommodate special diets, has a job working with special needs children.  I'm appalled. 
Title: Re: Living with Food Allergies, FEB 2013
Post by: SilverLining on June 21, 2014, 11:49:11 AM
Today is a crazy hectic day.  I didn't have time to exercise, and probably won't tomorrow either.  Since the pool opened today, I figured I'd go for a quick dip, do a few laps.

The pool was just filled with ice water and has not had time to warm up, and I had about a half hour.  Nobody else....not even kids....had gone as deep as their knees.  But I was determined.

I got as far as my waist and said to the life guard, "this is likely to give me a heart attack, is there an AED around?"  She looked around.  (Great, just got her orientation and she doesn't know whether or not there is one?).

Anyway, then I said "never mind.  I've got an epi-pen over there.  That'll give the heart a jumpstart if needed."

See that!  I'm prepared for everything. Lol.

Anyway, I got in and swam for about a half hour.  Hard to actually hold your breath and swim when the water is that cold.  I have a whole new understanding of hypothermia.
Title: Re: Living with Food Allergies, FEB 2013
Post by: notashrimpwimp on June 21, 2014, 06:02:38 PM
I've always considered libraries the enduring bastion of safety. Those signs prohibiting eating and drinking spoke to my soul.

No longer. I've encountered people eating meals, those lovely shrimp fumes, and reactions to touching the equipment. The systematic dismantling of my faith reached its nadir when I was stuck in the restroom while someone ate their food. The fact that they retreated to the unmonitored restrooms proves their awareness of the policy, which makes their decision all the more egregious.
Title: Re: Living with Food Allergies, FEB 2013
Post by: Janelle205 on June 22, 2014, 07:01:54 PM
So, apparently apples can be an airborne problem for me, if they are being prepared and baked in large quantities.  This has not been the case before, but being that it was essentially a 'blind' challenge for me, I'm not going to question it.

Awesome.  :banghead:
Title: Re: Living with Food Allergies, FEB 2013
Post by: YouKnowWho on June 25, 2014, 07:24:18 AM
Cuban food is safe for DS1.  Whodathunk?  (Not all Cuban food - specifically what he was eating).  Not only that - he ate it with a smile on his face.  He had that "When Harry Met Sally" moan going.   :happydance:
Title: Re: Living with Food Allergies, FEB 2013
Post by: spacecanada on June 28, 2014, 11:20:07 PM
I'm a little excited to bring my Allerject trainer in to our firs aid class tomorrow morning.  The instructor only has EpiPen trainers, and I figure everyone should be aware that other options exist and how to use them too.   :thumbsup:

Now... if only the first aid course didn't trigger my PTSD.  Gah.  I'm making an appointment with my GP next week to talk about this. With all the recent triggers and episodes, I need further mental health treatment. :-/
Title: Re: Living with Food Allergies, FEB 2013
Post by: SilverLining on June 30, 2014, 11:43:03 AM
I had given my twinject trainer to my son when he taught that course.

Sorry your stressed.
Title: Re: Living with Food Allergies, FEB 2013
Post by: LinksEtc on July 02, 2014, 05:09:01 PM
Dd's mouth is itching a bit after eating walnuts & a little coconut ... neither of these foods has ever been a problem ... will tell allergist at next appt, but I am really hoping it's nothing.
Title: Re: Living with Food Allergies, FEB 2013
Post by: ajasfolks2 on July 08, 2014, 10:25:06 AM
Mango challenge done and NOT allergic to mango.  WOOT!!!!!!!!   :thumbsup:

May be allowed to challenge garbanzo at home, after next doc appt.

Am hoping both kids can be challenged on PISTACIO soon!!
Just need to find some that are truly NOT-xcontam with any other nuts or peanut!!

Title: Re: Living with Food Allergies, FEB 2013
Post by: LinksEtc on July 08, 2014, 10:39:52 AM
Congrats Ajas!!!     :thumbsup:
Title: Re: Living with Food Allergies, FEB 2013
Post by: GingerPye on July 08, 2014, 12:27:35 PM
ohhhh, that's GREAT news, ajas!!   :thumbsup: :thumbsup:
Title: Re: Living with Food Allergies, FEB 2013
Post by: GoingNuts on July 08, 2014, 05:42:06 PM
That's wonderful news, AJAS!

Check out "Wonderful" brand pistachios - we use their almonds b/c they are truly not X-contam with any other nut; hopefully it's the same with pistachios.  :)
Title: Re: Living with Food Allergies, FEB 2013
Post by: yelloww on July 09, 2014, 10:20:04 PM
Keenan Farms pistachios aren't xcont. They sell them in our grocery store, but I called and talked to someone there a while ago. They only do pistachios. Ds has been eating theirs for about 18 mos now.
Title: Re: Living with Food Allergies, FEB 2013
Post by: YouKnowWho on July 11, 2014, 10:28:13 PM
DS1 tells me he feels normal within our homeschool group and for once DS2 is the outsider.  The majority of our members are GF due to intolerances.  They were discussing their various issues the other night and DS1 was grinning like a Cheshire cat.

Odd feeling.
Title: Re: Living with Food Allergies, FEB 2013
Post by: LinksEtc on July 25, 2014, 07:14:57 PM
Dd's mouth is itching a bit after eating walnuts & a little coconut ... neither of these foods has ever been a problem ... will tell allergist at next appt, but I am really hoping it's nothing.


 :-/


She had baklava today and her tongue slightly itched.


She just admitted that one of her favorite treats, magic bars, made her mouth itch a little the other day and she didn't tell me because she didn't want to make a big deal of it.   :paddle:


I wonder if it could be OAS.  I don't want to avoid another food ... not that anybody wants to.


I told her no more walnuts until we see what the allergist says.


ETA - I should call the restaurant to make sure the baklava didn't have coconut in it.




Title: Re: Living with Food Allergies, FEB 2013
Post by: LinksEtc on August 04, 2014, 04:23:42 PM
It's so nice when you feel your allergist really knows her stuff, when everything said makes sense, when you feel that you are in good hands.  I feel like we are on the same page as far as how to handle things.  Definitely worth the drive.


 :yes:
Title: Re: Living with Food Allergies, FEB 2013
Post by: spacecanada on August 04, 2014, 04:32:52 PM
When a parent points to your MedicAlert bracelet and Allerject holder and remind her child (with allergies) how important it is to do the same (because she wasn't wearing her bracelet at the time), it makes you smile a bit on the inside.  I work with kids, but never really thought of myself as a mentor for kids with allergies too.  :yes:
Title: Re: Living with Food Allergies, FEB 2013
Post by: PurpleCat on August 05, 2014, 01:16:59 PM
We were away for over a week.  At dinner last night DD said, "finally!  A home cooked meal!!!".  Translation:  Finally!  After 10 longs days, a meal that requires no discussion about allergies, allergens, how food is cooked, just point your finger at me and make me feel weird cause I am different, and no anxiety that I was heard, listened to and care was truly taken in making my meal!"


It's not easy being DD eating away for so long.  She had a couple of moments that worried me but admitted she made herself sick because of her own anxiety.

Her coaches did not understand why we did not go with them to Texas Roadhouse......until at breakfast the next morning when they expressed their shock and admitted to not understanding what we mean by "peanuts being everywhere".  They asked how I knew and I smiled and said "Oh my FAS friends were quick to warn me to call ahead first!"  She and I had a lovely meal at Longhorn Steakhouse instead.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on August 05, 2014, 04:33:15 PM
It's so nice when you feel your allergist really knows her stuff, when everything said makes sense, when you feel that you are in good hands.  I feel like we are on the same page as far as how to handle things.  Definitely worth the drive.


 :yes:


Oh, this makes my day, Links!!   :heart:  I want that for EVERY person at FAS. 
Title: Re: Living with Food Allergies, FEB 2013
Post by: LinksEtc on August 05, 2014, 04:55:39 PM
It's so nice when you feel your allergist really knows her stuff, when everything said makes sense, when you feel that you are in good hands.  I feel like we are on the same page as far as how to handle things.  Definitely worth the drive.


 :yes:


Oh, this makes my day, Links!!   :heart:  I want that for EVERY person at FAS.


and you know what else ... she's kind, and very professional.

Yes, I also wish that for all with FA.

Title: Re: Living with Food Allergies, FEB 2013
Post by: GoingNuts on August 05, 2014, 06:28:41 PM
Last week I had to buy a gift bag for a baby gift, and I found a really cute one that had a card already attached.  There was a design of an elephant, and inside it said something like, "Welcome to the little peanut."

I Just.  Couldn't.  Buy.  It.  Could not.

So I bought an ugly one with a blank card instead.

Title: Re: Living with Food Allergies, FEB 2013
Post by: GingerPye on August 06, 2014, 11:47:37 AM
LOL,  peanuts are Evil.   >:(

Just like our baked egg cake and our baked milk cake --- both cakes are EVIL.  (DD did not pass those challenges)  We threw out the evil cakes.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on August 06, 2014, 02:52:12 PM
Yes-- and it's astonishing how GOOD one feels about dumping out that evil food, isn't it??  It's massively cathartic to "punish" the food by putting it into the garbage.   

 :misspeak:
Title: Re: Living with Food Allergies, FEB 2013
Post by: Janelle205 on August 14, 2014, 03:52:39 PM
Life with a severe food allergy:  Seeing a puddle on the floor of the Walmart aisle, and thinking: "That's either pee or apple juice...I hope it's pee."
Title: Re: Living with Food Allergies, FEB 2013
Post by: LinksEtc on August 22, 2014, 08:12:25 PM
Slight mouth itch again today with just a graham cracker. The other day with graham cracker, peanut butter, & carrots.

Strange.    :-/

I will have to get the blood test done soon to try & see what's up.  It's more of an annoyance than anything at this point, but it might make it harder for me to tell if the sesame allergy is becoming more sensitive.

I was trying to explain OAS to dd ... I don't think that I did a very good job.

Title: Re: Living with Food Allergies, FEB 2013
Post by: LinksEtc on August 23, 2014, 04:05:23 PM
My posting style is such that I don't name my docs on here .... but I think that I will give our allergist a nickname ... maybe I've been inspired by CM's use of Dr.Awesome.  My feeling is that I will probably be with her a long time, unless they kick me out and tell me not to return which is always a distinct possibility with me  :P .

So I was thinking maybe HumbleGuru or TheSerene&Wise1 , but I've decided on Dr-FA-Yoda because every good FA-Jedi needs a Yoda.

Although tempting, I will refrain from calling our GI Dr.Skywalker   :misspeak:   ;D
Warning - Some language.
"Colon Wars"
https://m.youtube.com/watch?list=PLqBLoScSYEGdT6e0PpIVNWpdTZonayRkV&v=74oK6RFNmDg&feature=youtu.be





Title: Re: Living with Food Allergies, FEB 2013
Post by: GoingNuts on August 23, 2014, 04:24:38 PM
 ;D
Title: Re: Living with Food Allergies, FEB 2013
Post by: ajasfolks2 on August 23, 2014, 06:36:04 PM
Finally got new RAST, SPT, and pnut component tests done for kids.

DS -- confirmed what we already knew:  high numbers to all the high-risk pnut components.  Epinephrine required forever, until there is proven safe cure or treatment he is willing to undertake (his decision).  Most tree nuts were still very high on RAST and SPT . . . strict avoidance of all continues.  Latex allergy numbers WAY down now!  Woot!

DD -- likely will be able to challenge pnut and we expect good outcome.  We won't consume pnut in our home, but this may make life-away-from-home easier and less stressful for her.  Still considered highly allergic / ana to a few treenuts . . . but we hope to cross off some others for at least at-home/isolated consumption. 

Life goes on . . . 504 meetings next week . . . but we're not gonna stress over them . . . these schools seem to be really trying, and somewhat open to education as to LTFA and accommodation / inclusion (even if one school totally tubed it late last year).

~ ~ ~

Trying not to get frustrated as to many insurances dropping Auvi_q.

I'd like to say a couple things to Mylan, maker of Epipen:
#1 -- If you are working behind scenes to get Auvi-Q dropped from coverages as a means of pumping up your own product and bottom line, you are lower than low.
#2 -- If you want to appeal to teens and adults, perhaps consider a rework of the Epipen so that it is not so big and bulky AND does not look like a ____________ .
 (Think middle school boys' minds . . . we've heard it called for years the "Epi-_ _ nis" )

 ;D

Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on August 24, 2014, 08:09:55 AM
Purplecat glad you avoided that
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on August 25, 2014, 01:03:04 PM
So strange that now my daughter's calculus re: risk/benefit and food challenges is influenced by her boyfriend. 

In other words, the hardest allergen to avoid has jumped to the top of the list now, and before she was content to let it ride.
Title: Re: Living with Food Allergies, FEB 2013
Post by: ajasfolks2 on August 27, 2014, 06:35:02 PM
Just putting this peanut component explanation link here, since many of us post about our pnut component levels . . .

http://www.questdiagnostics.com/testcenter/testguide.action?dc=TS_Peanut_Component_Panel
Title: Re: Living with Food Allergies, FEB 2013
Post by: SilverLining on August 31, 2014, 09:46:03 PM
I know this is my own fault, but it's still aggravating.

I knew I had enough epi-pens.  One expired as school was ending and I replaced it in July. 

I know most people keep more, but ds carries one and has one in the office at school.  I carry one.  Sometimes two, but then one is usually recently expired.

So, I was getting stuff read for school, grab the epi-pen box for school and......it's empty.  After a half hour of hunting I found it.  I had put the spare with my swimming stuff so when I go to the pool I don't take it out of my purse and forget to out it back in my purse.

OK, so now I have the three epi's and I know none are expired, but being the paranoid person I have become, I check them all.  And....one is expired.  How the heck did that happen?

It's a long weekend, so it won't be replaced for a few days.  And, it looks like we have 0 repeats.  Both of us are out of repeats.

 :crazy:
Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on August 31, 2014, 09:59:56 PM
DS:  I'm going to have ginger ale. Ginger ale means flying on an airplane or the hospital. When you are at the hospital ginger ale is the only thing besides water and you get it so you don't have to taste as much as the prednisone. But it's never Canada Dry. It's only Seagram's. Hospital ginger ale comes from the Sea, not Canada.



:rofl:


Yeah--he equates the hospital with being there for anaphylaxis. 
Title: Re: Living with Food Allergies, FEB 2013
Post by: SilverLining on August 31, 2014, 10:40:42 PM
Canada Dry is the ONLY ginger ale worth drinking.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on August 31, 2014, 10:59:52 PM
Indeed. And the cranberry-ginger-ale that they have around Christmas?    Pure awesome with awesome sauce.
Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on September 01, 2014, 08:42:44 AM
We agree wholeheartedly. It's just funny, because before I started buying ginger ale, I also uses to associate it only with airplanes. So it was funny to hear he did, too. But the fact that he also associated it with the anaphylaxis, the ER, and pred was so funny to me. :)
Title: Re: Living with Food Allergies, FEB 2013
Post by: LinksEtc on September 01, 2014, 07:28:36 PM
Older non-FA dd picked out & bought a shirt covered with cupcakes today which made me think of all of you  :) .

Younger dd was just getting over some probably virus thing ... all the sudden, downhill fast with fever  :-[ ... when this kind of thing happens, I always hope it's just back-to-back viruses & not something more serious.  Oh well, she's resting which is probably the best thing for her.
Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on September 01, 2014, 10:07:54 PM
Hope she feels better soon!
Title: Re: Living with Food Allergies, FEB 2013
Post by: LinksEtc on September 02, 2014, 09:35:38 AM
Not 100%, but much better today ... my thinking is actually leaning towards (hopefully 24 hr) stomach bug ... older dd also started not feeling well & threw up later last night.   :P . 
Title: Re: Living with Food Allergies, FEB 2013
Post by: spacecanada on September 02, 2014, 04:15:37 PM
Treatment for PTSD (due to anaphylaxis) starts on Thursday.  Not sure whether to be be hopeful or terrified.   It's going to be a long journey.
Title: Re: Living with Food Allergies, FEB 2013
Post by: LinksEtc on September 02, 2014, 04:25:50 PM
Treatment for PTSD (due to anaphylaxis) starts on Thursday.  Not sure whether to be be hopeful or terrified.   It's going to be a long journey.


Big  :grouphug:


 :heart:

Title: Re: Living with Food Allergies, FEB 2013
Post by: SilverLining on September 02, 2014, 06:36:08 PM
Treatment for PTSD (due to anaphylaxis) starts on Thursday.  Not sure whether to be be hopeful or terrified.   It's going to be a long journey.

Was there a recent reaction?
Title: Re: Living with Food Allergies, FEB 2013
Post by: spacecanada on September 02, 2014, 07:49:54 PM
Was there a recent reaction?
October of last year. The after-effects still haven't gone away and some things like flashbacks and anxieties have become worse. Seeking professional help was long overdue.
Title: Re: Living with Food Allergies, FEB 2013
Post by: SilverLining on September 02, 2014, 08:10:53 PM
Not meaning to sound like that isn't important (it definitely is important) but I'm glad there wasn't a recent reaction I didn't know about.
Title: Re: Living with Food Allergies, FEB 2013
Post by: LinksEtc on September 03, 2014, 11:01:33 AM
Maybe this should be in OT.

Why is it that I love learning about FA/asthma/GI for younger dd, but dealing with older dd's ADHD & behavior issues is completely draining to me?  My homework assignment from her doc is to read up on executive functioning which I know is good advice as I've seen this topic discussed here ... but why am I procrastinating? 

I'm not really expecting an answer.  Maybe I'm just venting.
Title: Re: Living with Food Allergies, FEB 2013
Post by: SilverLining on September 03, 2014, 11:13:27 AM
Things that popped I to my head.

Do you feel overwhelmed with the ADHD & behaviours, maybe because you don't know as much about them?

Do you worry that putting time into that might take the time away from the other?

Is there a part of you that sometimes kind of feels regarding older dd's problems she should just " get over it".  There is no way to type that without it sounding horribly rude.  But let me just say, with my son there were times when I felt that way. In fact there still are some days.  But it doesn't mean I don't "get" that he can't just get over it.
Title: Re: Living with Food Allergies, FEB 2013
Post by: GoingNuts on September 03, 2014, 05:50:34 PM
^ What SL said applies to my older son as well.

For me I think that reading about the allergies and asthma made me feel more in control because there was more that I could control; with the LD there seemed to be less of a cause and effect between anything I did and tangible results.  I hope I communicated that clearly.

And yes, my DS is an adult and sometimes I still wish he would just "get over it", even though I understand he can't.  But wowza, it can be exasperating at times.
Title: Re: Living with Food Allergies, FEB 2013
Post by: LinksEtc on September 03, 2014, 07:02:58 PM
Do you feel overwhelmed with the ADHD & behaviours,

Yes.

maybe because you don't know as much about them?

Partly, but it's more than that ... I feel that even if I do everything I can, it is likely that I will not be able to steer things towards a positive outcome.  I know that I have to try & do what I can, but I'm not hopeful about this.  Plus mental health doesn't seem as clear as things like asthma/allergies ... she's been going to docs for this for many years and they all have very different approaches & philosophies ... the approach 1 doc is totally into, another might frown on.  I haven't seen clear lasting progress with any approach.

Plus, it's kind of a mismatch between my personality and her mind which hardly ever seems calm.  Nothing is easy.  Dealing with older dd has been so much more difficult for me than younger dd's health stuff.  And then there is the blame the mom thing ... "Your mom must spoil you" kind of stuff from people who don't understand and can't empathize ... it's ok, I can handle it.


Do you worry that putting time into that might take the time away from the other?

No  :) .  I don't need to spend a lot of time now with younger dd's issues ... they are under control & I understand them & she has good docs.  As strange as this sounds, being here is something I enjoy at this point.  I have to limit my time here because I'd easily spend too much time here otherwise.   :hiding:


Is there a part of you that sometimes kind of feels regarding older dd's problems she should just " get over it".  There is no way to type that without it sounding horribly rude.  But let me just say, with my son there were times when I felt that way. In fact there still are some days.  But it doesn't mean I don't "get" that he can't just get over it.

It's really hard for me to tell what is within her control & what is not.  When is she purposely just behaving badly, and when is it not something she can help.  This is not black & white ... it's a continuum.



Title: Re: Living with Food Allergies, FEB 2013
Post by: SilverLining on September 03, 2014, 07:08:25 PM
Quote
It's really hard for me to tell what is within her control & what is not.  When is she purposely just behaving badly, and when is it not something she can help.  This is not black & white ... it's a continuum.

Absolutely.  And there is at least a third option.  Sometimes a kid is just having a bad day. A normal everybody gets them bad day.

Title: Re: Living with Food Allergies, FEB 2013
Post by: LinksEtc on September 03, 2014, 07:08:52 PM
^ What SL said applies to my older son as well.

For me I think that reading about the allergies and asthma made me feel more in control because there was more that I could control; with the LD there seemed to be less of a cause and effect between anything I did and tangible results.  I hope I communicated that clearly.

And yes, my DS is an adult and sometimes I still wish he would just "get over it", even though I understand he can't.  But wowza, it can be exasperating at times.


Yes.   :yes:


Well, I'm not going to talk too much about this here, but I may lurk a bit more in OT & if anybody has additional tips, feel free to pm me.


 :heart:
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on September 03, 2014, 08:50:13 PM
Quote
It's really hard for me to tell what is within her control & what is not.  When is she purposely just behaving badly, and when is it not something she can help.  This is not black & white ... it's a continuum.

Absolutely.  And there is at least a third option.  Sometimes a kid is just having a bad day. A normal everybody gets them bad day.

 :yes:   This. 
Title: Re: Living with Food Allergies, FEB 2013
Post by: GoingNuts on September 04, 2014, 06:13:16 AM
^ Absolutely.  It's something we all struggle with.
Title: Re: Living with Food Allergies, FEB 2013
Post by: becca on September 04, 2014, 11:59:36 AM
Late to this, but dd has both the FAs and ADHD.  And depression that is treated with medication.  Yeah, hard to tell a normal bad day from depression, and inattention from just laziness, etc...  It is very challenging.  And most often, she is sweet and failry resilient, but when things turn, they can be very overwhelming. 
Title: Re: Living with Food Allergies, FEB 2013
Post by: LinksEtc on September 04, 2014, 06:27:12 PM
Thanks Becca.  You all would be great to talk to about this  :heart:, but Links is only a semi-private ID for me  :-/   ... even in OT, I just don't feel comfy going into more detail.  I am going to look at the ADHD threads here and that should help.

Thanks for the support ... I appreciate it.   :heart:
Title: Re: Living with Food Allergies, FEB 2013
Post by: SilverLining on September 04, 2014, 08:42:04 PM
do that, and I'm sure everyone would be open to PMing with you if there's questions you don't want to post publicly, or just want to talk. :)
Title: Re: Living with Food Allergies, FEB 2013
Post by: becca on September 05, 2014, 06:17:48 AM
Absolutely.
Title: Re: Living with Food Allergies, FEB 2013
Post by: GoingNuts on September 05, 2014, 07:39:20 AM
 :yes:
Title: Re: Living with Food Allergies, FEB 2013
Post by: LinksEtc on September 05, 2014, 09:20:54 AM
 :heart:    You guys gals are awesome.


---------------------------

ETA - I'm going to take a few days off from my internet activities ... no need to worry ...

I need to work on setting more realistic goals ... ok ... I will decrease my internet time.








Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on September 08, 2014, 07:04:45 PM
OMG.


DD15 just passed an open egg challenge.


{slack jaw}

For anyone that has followed along with her history, this is-- truly-- a miracle.    I have no idea if it will "stick" or not, but she went through a five hour food challenge without so much as a stray hive.  She at over a full scrambled EGG.  Like-- REAL EGG-EGG.   :misspeak:
Title: Re: Living with Food Allergies, FEB 2013
Post by: Janelle205 on September 08, 2014, 08:11:34 PM
CM, that is awesome!  Hopefully it will last, because that would make lots of things much easier.
Title: Re: Living with Food Allergies, FEB 2013
Post by: catelyn on September 08, 2014, 08:26:20 PM
 :thumbsup: :thumbsup: :thumbsup:
OMG.


DD15 just passed an open egg challenge.


{slack jaw}

For anyone that has followed along with her history, this is-- truly-- a miracle.    I have no idea if it will "stick" or not, but she went through a five hour food challenge without so much as a stray hive.  She at over a full scrambled EGG.  Like-- REAL EGG-EGG.   :misspeak:
Title: Re: Living with Food Allergies, FEB 2013
Post by: rebekahc on September 08, 2014, 08:40:25 PM
 :happydance: :happydance: :happydance: :happydance:
Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on September 08, 2014, 09:01:33 PM
Oh my goodness.

Unbelievable.

WOW!!!!! Congratulations!!  I can't believe this.  It's amazing.

So---what's for breakfast tomorrow?

When are you making:
--cheesecake
--fritatta (I can tell you some of my fave ingredients. We make this at least once every two weeks.)
--pancakes
--French toast

Wow.  I am just amazed.  I am freaking OUT!!!!
Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on September 08, 2014, 09:03:45 PM
(http://i1178.photobucket.com/albums/x370/IRickmar/Congrats5Fmc2DHT5FSmiley5B15D1.gif)





I would have to be freaking out to post a moving gif. Am I right?
Title: Re: Living with Food Allergies, FEB 2013
Post by: LinksEtc on September 08, 2014, 09:24:47 PM
That's amazing!   :thumbsup:  I'm so happy for your family.

 :coolbeans:


 :heart:
Title: Re: Living with Food Allergies, FEB 2013
Post by: becca on September 08, 2014, 09:35:10 PM
 :happydance: :thumbsup: Yay!!!!  She so deserves this! 

And this  :cocktail: for you!
Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on September 08, 2014, 09:36:10 PM
I'm thinking taffy . . . .
Title: Re: Living with Food Allergies, FEB 2013
Post by: becca on September 08, 2014, 09:38:21 PM
 :yes: ;D
Title: Re: Living with Food Allergies, FEB 2013
Post by: momma2boys on September 08, 2014, 09:40:11 PM
That is pretty incredible!  Congrats!  :happydance:
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on September 08, 2014, 09:49:41 PM
LIFE-changing.


OMigoodness!!

 :coolbeans:


BEST day in fourteen years.  No joke.   :heart:
Title: Re: Living with Food Allergies, FEB 2013
Post by: momma2boys on September 08, 2014, 09:59:24 PM
When is the last time she reacted?
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on September 08, 2014, 10:06:40 PM
Less than a year ago.  Truly. 
Title: Re: Living with Food Allergies, FEB 2013
Post by: momma2boys on September 08, 2014, 10:11:59 PM
I thought I remembered one relatively recent, baked egg right? What made you decide to challenge? Not questioning your decision, just intrigued.
Title: Re: Living with Food Allergies, FEB 2013
Post by: GoingNuts on September 08, 2014, 10:20:34 PM
Wow, that's amazing!!!
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on September 08, 2014, 10:26:32 PM
Because, just on a gut-level, something seemed to finally shift in the past three or four months.  There was no more little stuff anymore-- so when she made a batch of cookies a few weeks back for her BF's brother, I daubed a tiny bit of egg white onto the back of one hand-- intact skin, but still, raw egg white, YK?

After ten minutes, she had NO skin symptoms at all.  No redness, no nothing. 

That's when we knew.
Title: Re: Living with Food Allergies, FEB 2013
Post by: TabiCat on September 08, 2014, 10:27:27 PM
 :happydance: :happydance: :happydance:
way to go SKY it is tough to knowingly eat something that has been such a danger.
Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on September 08, 2014, 10:55:55 PM
I'm just thinking of what this could mean for her at some point at college. 
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on September 09, 2014, 01:00:26 AM
 :yes:  Exactly.  It's just removed a HUGE layer of worry and risk. 
Title: Re: Living with Food Allergies, FEB 2013
Post by: hedgehog on September 09, 2014, 05:33:40 AM
 :happydance:  :happydance:  :happydance:
Title: Re: Living with Food Allergies, FEB 2013
Post by: ajasfolks2 on September 09, 2014, 06:49:40 AM
 :thumbsup: :thumbsup: :thumbsup:

CM, WOW!!!  I'd be making frittatas and having a mimosa for adults.   ;D
Title: Re: Living with Food Allergies, FEB 2013
Post by: YouKnowWho on September 09, 2014, 07:11:30 AM
That is amazing!  Congratulations Sky!  :heart: :heart: :heart:
Title: Re: Living with Food Allergies, FEB 2013
Post by: PurpleCat on September 09, 2014, 07:14:47 AM
Congratulations!  That is awesome news!
Title: Re: Living with Food Allergies, FEB 2013
Post by: my3guys on September 09, 2014, 07:15:57 AM
WOW!!!! CM!!! That's amazing!!!! Congrats to her!! :happydance: :happydance: :happydance: And you :cocktail: :cocktail:
Title: Re: Living with Food Allergies, FEB 2013
Post by: Scout on September 09, 2014, 10:47:23 AM
 ;D  ya! 
Title: Re: Living with Food Allergies, FEB 2013
Post by: joanna5 on September 09, 2014, 11:26:35 AM
Wow- that's amazing!
Title: Re: Living with Food Allergies, FEB 2013
Post by: Linden on September 09, 2014, 11:46:48 AM
That is absolutely wonderful!!!!!  Woo hoo!!!!!!!!!! So, so happy for you and your daughter!!!!!!!
Title: Re: Living with Food Allergies, FEB 2013
Post by: MaryM on September 09, 2014, 12:22:34 PM
Congrats CM! I am so happy for your DD!!!! :happydance:
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on September 09, 2014, 12:24:37 PM
Annnnnnnnnnd the morning after-- DD has an asthma flare that we can neither explain nor really get a grip on.   :-[

Unsure if it is at all related.  Will have to wait and see if it is impending onset of illness.  {sigh}

This stuff is never simple or uncomplicated, is it??
Title: Re: Living with Food Allergies, FEB 2013
Post by: PurpleCat on September 09, 2014, 12:41:28 PM
No, it's not.  I'm sorry.  You know my DD's story.  I hope and pray your DD has a different outcome.  Any eczema?
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on September 09, 2014, 12:47:14 PM
She says no-- but I'm suspicious since she was clawing at her legs last night.   :-[
Title: Re: Living with Food Allergies, FEB 2013
Post by: becca on September 09, 2014, 01:15:27 PM
How about the air quality from the fires?  Could that be a factor? 
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on September 09, 2014, 01:50:51 PM
I suspect not-so-awesome air quality and emotional distress (unrelated to challenge).

Albuterol moved things about 5-10% in the right direction, but her peak flow numbers were bad this morning.  70-75% of good days.
Title: Re: Living with Food Allergies, FEB 2013
Post by: TabiCat on September 09, 2014, 11:31:40 PM
oh no  :heart:
Title: Re: Living with Food Allergies, FEB 2013
Post by: PurpleCat on September 10, 2014, 07:25:50 AM
How is she today?  Been thinking about her and you all night!
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on September 10, 2014, 10:18:28 AM
Albuterol not really moving things-- wish that we still had a nebby for stuff like this-- DD says it's "low" and she can't pull the puffs down to where they would help.

Peak flows still in the low 70% range.

One particularly unwelcome possibility is that we've traded up for a cat allergy.   :-[  This is the problem with kids like her-- you just have to think that wishing for a particular allergy-related outcome is like wishing on the monkey's paw.  I hate this stuff.   :misspeak:
Title: Re: Living with Food Allergies, FEB 2013
Post by: PurpleCat on September 10, 2014, 12:48:21 PM
I apologize if these are dumb questions.......but....

When she takes her inhaler is she standing up tall?  That makes a huge difference for DD, especially when she is compromised.  It also helps DD expel more air before she takes in the med.

Is she using a spacer?  That is something else that helps my DD get the medicine "low down".

So sorry, that is horribly uncomfortable and scary for your DD.
Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on September 10, 2014, 01:09:29 PM
Oh wow about cat.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on September 10, 2014, 01:25:43 PM
Yes, she's using really good technique-- including the method of doing one puff, then waiting 5 minutes or so for the next one (to open airways in order to get more meds where they're needed).

She's functioning just fine-- she is fairly functional (unless you push with intense activity) down to about 60% or so-- she just tires easily and looks a bit on the pale side.

Title: Re: Living with Food Allergies, FEB 2013
Post by: Janelle205 on September 10, 2014, 02:39:45 PM
Junky or just tight?  If she's got junky lungs, I highly recommend positional coughing to help clear it out.

Wish you had a neb too - I don't know what I would do without mine.  I was going to recommend a place that I have got them from online before, but then I realized that, oh yeah, you'd have to have meds to go in it.  Not everyone has 50 odd boxes of albuterol and atrovent stockpiled just in case.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on September 10, 2014, 02:46:27 PM
I can't really tell-- she thinks "just tight" and it's not clear what role (if any) emotional distress/anxiety is playing here-- some, though, I'd put money on it.

Title: Re: Living with Food Allergies, FEB 2013
Post by: Janelle205 on September 10, 2014, 02:49:56 PM
This is going to sound ridiculous, but I have some vocal cord dysfunction issues that can contribute to the tight feeling when I'm anxious.  Counting backwards from 20 slowly generally helps to loosen that up, if she is having any trouble getting air in.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on September 10, 2014, 04:42:32 PM
It's definitely lower-- and it improves when she's out of the house and away from her cat. 

Stress level should improve dramatically in about 30 hours, though.  Until then I think we'll sit tight and not try to overthink too much.  She can run indefinitely on 75%.  It just doesn't leave much margin.  KWIM?

Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on September 10, 2014, 05:13:18 PM
How long have you noticed this correlation with the cat? Will you seek testing?  What will you do with the cats?
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on September 10, 2014, 06:27:05 PM
Well, honestly-- this is new (ish)-- though it's been a trend over the past few months-- but the severity took a BIG hop this week.  {sigh}   Monkey's paw.

It's the one cat-- the short-haired orange one.  The long-haired one can probably stay, as she is SUPER low FelV shedding (as per other friends who are demonstrably "very" allergic but tolerate her well), and she doesn't sleep in my DD's bedroom anyway.

After driving in her car for a couple of hours, her peak flow numbers had recovered to near 85% when she came home.  Whatever it is, the house is making it worse.
Title: Re: Living with Food Allergies, FEB 2013
Post by: Stinky10 on September 10, 2014, 10:10:56 PM
we are hoping for the best here.....  :heart:
Title: Re: Living with Food Allergies, FEB 2013
Post by: starlight on September 10, 2014, 10:45:43 PM

After driving in her car for a couple of hours, her peak flow numbers had recovered to near 85% when she came home.  Whatever it is, the house is making it worse.

If there were fires in the area, maybe change/clean your A/C filter?
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on September 11, 2014, 01:15:09 AM
Probably a good plan either way.
Title: Re: Living with Food Allergies, FEB 2013
Post by: becca on September 11, 2014, 06:26:17 AM
CM, I do not have any officially diagnosed asthma, but we think I do have it.  If I cry, I get wheezey and I cough.  Not sure why, but I do.  So, for me, stress certainly plays into it. 
Title: Re: Living with Food Allergies, FEB 2013
Post by: momtoAidenDeclan on September 11, 2014, 05:17:00 PM
Just seeing this - :happydance:
 WOW!!
CM, that is such fantastic news...I am so happy for her! (and you)  And especially at this time when she is about to go out into the big bad world, further away from her safe haven! :happydance:
Title: Re: Living with Food Allergies, FEB 2013
Post by: LinksEtc on September 12, 2014, 06:39:05 PM
I hope she's feeling better CM & that it doesn't turn out to be related to the cat. 
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on September 14, 2014, 01:24:31 PM
We're thinking, unfortunately, that pushing down on the "egg allergy" corner of the atopic raft has done two important things--


1.  Made her asthma (normally VERY mild other than during illness, and normally VERY responsive to meds) difficult to control, and placed her sort of chronically on the border of the yellow zone, best case scenario, and--

2.  caused a CAT ALLERGY to pop up above the waterline.   Namely, to our high-Fel d1 shedding cat, who-- you guessed it, is DD's cat. 

We also have now got some serious questions about whether or not this is true tolerance anyway-- she's had asthma and popped hives after consumption of a normal-ish (small even) dose of pretty well-cooked eggy food.  (Crepes that I made here at home).

Didn't happen until the SECOND dose within 24 hours, btw-- but it was too close in time to be coincidence or (probably) anything else. 

I'm really feeling so discouraged about this now.   :-[
Title: Re: Living with Food Allergies, FEB 2013
Post by: LinksEtc on September 14, 2014, 02:02:08 PM
I wish that I could give you an IRL hug.

 :heart:

Have you spoken with Dr. Awesome about this?

 :grouphug:
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on September 14, 2014, 03:31:54 PM
Lacked opportunity on Friday, when I finally became concerned that this wasn't attributable to emotional distress.  It's not, and it's also just as hard to control as it was when we thought it was air quality and emotional.

She's also far enough through puberty that it's probably not solely an exacerbation due to that, either.  Monday I'll be calling Dr. Awesome's office.  {sigh}

In the meantime, considering adding on a combo steroid + LABA into things to get better control than she's got with doubled-up antihistamines and SABA.
Title: Re: Living with Food Allergies, FEB 2013
Post by: GingerPye on September 16, 2014, 08:06:33 AM
CM, that's too bad.   :grouphug:
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on September 16, 2014, 11:04:25 AM
Well, Dr. Awesome's advice was exactly what my instincts told me to do-- the steroid is definitely helping.  I just hope that she doesn't need it long-term now.
Title: Re: Living with Food Allergies, FEB 2013
Post by: becca on September 16, 2014, 12:54:59 PM
Glad she is doing better.  Breathing is a good thing. 
Title: Re: Living with Food Allergies, FEB 2013
Post by: starlight on September 16, 2014, 08:33:52 PM
Been thinking about your DD a lot CM. Did she go in to see the doc? Just on the off-chance that it's something else completely - I had pneumonia a number of times growing up and my only symptom was breathing problems, otherwise I felt fine.
Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on September 17, 2014, 11:03:32 AM
Me, too.

I've been thinking that the confluence if events seems a bit too related. So I'm wondering if they really are. The car thing is really surprising. How long have you noticed a sensitivity to it?  Not until after the challenge? You'd think it would have been a problem before that--unless adding the egg just made her cup overflow and what she had been able to hold in check she didn't have room to after having egg.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on September 17, 2014, 11:16:59 AM
That's precisely what I think-- because she has had the occasional issue with this cat in particular-- that is, her cat tolerance is pretty high.   I think that what caused the overflow is:

cat (THIS cat)
+
smoke inhalation from a grass fire (which caused a major asthma attack even at the time-- and this was three days prior to the challenge)
+
massive egg exposure

I think that the combination was WAY too much, and asthma has been the result.  I mean, no question, the air quality has been not-awesome-- but no worse than she has tolerated without issues in the past (burning is a thing here this time of year-- so it's an annual issue). 

Popping hives and sniffling when an additional egg exposure was attempted (when we could finally get her asthma into the green zone at least with meds, I mean), though-- that indicates to me that egg is at least part of this larger picture.

So we have a choice, as I see it--

get rid of this cat, or give up on egg for now.  Keeping both makes the margin too thin, and illness is going to result in asthma exacerbations that probably cannot be controlled, which is unacceptable.

Well, at least I hope that we have that choice.  But the alternative is that we're now dealing with asthma which is reactive, and we'll have to choose "neither" if that is actually the case.  The prudent move is still getting rid of the cat, though.

 :-/

Title: Re: Living with Food Allergies, FEB 2013
Post by: PurpleCat on September 17, 2014, 03:29:21 PM
That's really sad.  I hope there is a way to keep the cat.

Also why I don't want pets in the house.  I had a cat for 21 years and now we have no pets.  DD was 5 when my cat needed to be put down.

DD blood tests low for cat and a bit higher for dogs and higher for rodent type pets.  Skin test is negative for cat and positive for other pets.  The doctor has said she's not sure if they are false positives because DD's high total IGE.  That's why we've decided to try allergy shots starting next month.  If over time her total IGE drops, can she tolerate more things.

She wants a career working with animals....of course she does!
Title: Re: Living with Food Allergies, FEB 2013
Post by: YouKnowWho on September 17, 2014, 06:43:26 PM
DH is off the charts for dogs and cats.  After three rounds of shots - two short courses in FL, one very long in GA, he can now tolerate certain breeds of dogs (aka the designer lower allergenic varities like our terrier mix) but he can tolerate others.  He struggles still with cats - it even played into our house search.  He could not be on the lanai for long periods when we moved in.  Three years later, we have steam cleaned the indoor outdoor carpet numerous times and it's tolerable.  Good thing as he will be moving his office out there sometime over the spring unless we put this house on the market to find a better solution.
Title: Re: Living with Food Allergies, FEB 2013
Post by: becca on September 18, 2014, 05:51:36 AM
Dd is also very allergic to cats, but moreso if she touches them or in a multi cat household.  She can cat-sit, like, run in, dump some food, pet the cat, come home and wash up, and is ok.  But in our friend's home, with several cats(it fluctuates, she is a rescue person) and dd is congested, flushed withing 30 mins without antihistamine.  So, we can never get a cat, and she and I like them.  She also wants a career in animals.  Oh, she has reacted after 5 minutes in a large Petco around here too, where they board pets, including cats.  The only visible animals of any kind were behind glass, seperate from the store, but clearly on the same air system.  We had to leave. 

CM, she always tested postive, but as long as we owned the one cat she was with since birth, until 3yo, she never reacted.  Reactions began a couple fo years after that daily exposure was over.  Makes me wonder if she is a good candidate for allergy shots, as she is now developing nasty other EAs.

I hope it all calms down for oyur dd, CM, and you can keep the cats for their natural lifetiimes. 
Title: Re: Living with Food Allergies, FEB 2013
Post by: GoingNuts on September 18, 2014, 07:02:25 AM
A new employee had a minor reaction at work yesterday, after someone opened a Chinese Food takeout container of shrimp.  We bonded over a discussion of epipens, the hazards of dining out, etc. 

She is a 20-something that doesn't always carry her epipen.   My mission is to change that.  ;)
Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on September 18, 2014, 07:13:36 AM
Oh, that airborne shrimp is awful. Glad you are there for her GN.   
Title: Re: Living with Food Allergies, FEB 2013
Post by: LinksEtc on September 18, 2014, 07:24:19 AM
Playing detective for stomach ache issue with help of doc ...

interesting little tidbit ... stomach ache & sore throat can be strep.



Title: Re: Living with Food Allergies, FEB 2013
Post by: YouKnowWho on September 18, 2014, 08:12:39 AM
Playing detective for stomach ache issue with help of doc ...

interesting little tidbit ... stomach ache & sore throat can be strep.

DS1 without fail - barf, fever, complaint of sore throat within 24 hours.  First time he complained of stomach hurting, pre-barf, I was afraid his appendix ruptured.  Dr. Dinosaur looked at him and said nope, it's strep.  (Obviously his name Dr. Dinosaur implies that I have been less than happy with his services prior).  I rolled my eyes and was shocked when he was right.
Title: Re: Living with Food Allergies, FEB 2013
Post by: LinksEtc on September 18, 2014, 08:46:28 AM
LOL  ;D about Dr. Dinosaur.
Title: Re: Living with Food Allergies, FEB 2013
Post by: becca on September 18, 2014, 09:14:12 AM
Playing detective for stomach ache issue with help of doc ...

interesting little tidbit ... stomach ache & sore throat can be strep.





Oh yeah, one of the only two times dd has had strep, she projectile vomited while on the exam table in the docs office.  Ugh.  Hope you feel better.  We both had to go home in hopsital gowns...
Title: Re: Living with Food Allergies, FEB 2013
Post by: LinksEtc on September 18, 2014, 10:06:12 AM
It's dd again ... seems like it is always some health issue with some member of the family.  At least I have FAS to vent about it all.  It's kind of on-topic ... after all, it's important to remember that not all stomach issues are FA related  :) .



FAS ... "what it's really like to live with food allergies" ..... "and a bunch of other stuff" ...
"your one-stop learning, support, & venting place" ... aka the SOAK   ;)
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on September 18, 2014, 10:07:11 AM
Yup.

"It's not ALWAYS food allergies.  But you can't afford to think that first."

 :-/   :heart:
Title: Re: Living with Food Allergies, FEB 2013
Post by: Janelle205 on September 18, 2014, 10:40:28 AM
Man, I am SO glad that I never had the vomiting symptom of strep.  Because I had a TON of strep until I got my tonsils out at 17, and I hate throwing up.
Title: Re: Living with Food Allergies, FEB 2013
Post by: PurpleCat on September 18, 2014, 11:02:28 AM
My kids too!  Headache and stomach always beat the sore throat....I'd take them in, doctor on call would roll eyes at my insistence of a strep test and then smile sheepishly writing a script later for an antibiotic.
Title: Re: Living with Food Allergies, FEB 2013
Post by: LinksEtc on September 18, 2014, 11:05:28 AM
Speaking as a FA & GI mom, I hope it turns out to be a virus or strep.   :-/

Title: Re: Living with Food Allergies, FEB 2013
Post by: YouKnowWho on September 18, 2014, 03:56:44 PM
LOL  ;D about Dr. Dinosaur.

Yes well, I avoided this man at all costs.  He was DS1's initial ped who told me kids don't get food allergies until the age of 2.  Mind you he was failure to thrive, constantly covered in a rash or eczema and I was EBF.  (He was also anti-EBF because DH couldn't participate).  When DS1 was diagnosed, he still didn't believe it.  When DS1 had his first ana rxn - he told me that I was overreacting (despite showing him paperwork from ER).  I stopped seeing him unless desperate after that - unfortunately that means he is in the rotation during sick visits if my ped is not available.
Title: Re: Living with Food Allergies, FEB 2013
Post by: MaryM on September 18, 2014, 05:35:59 PM
DS gets strep at least 2x a year.  Very rarely does he have a sore throat.  For him it's usually a headache and yucky breathe.  Last time we went to dr he said it didn't look like strep and came back with the results of he test and said something like mom knows best, it was strep.  Dd only had it once and she threw up on my dry clean only comforter.
Title: Re: Living with Food Allergies, FEB 2013
Post by: PurpleCat on September 19, 2014, 07:36:32 AM
The things we moms remember!   ;D
Title: Re: Living with Food Allergies, FEB 2013
Post by: SilverLining on September 20, 2014, 10:42:02 PM
I love candy Kisses.  The Halloween candy made with molasses.

For years I couldn't eat them because they all had a peanut warning. (And actually, smelled like peanutbutter to me.). Several years ago I found safe ones.  I would stock up when the showed up in the dollar store....and eat them all and be out of them again.

But, for the last two years....I can't find safe ones.

I hate being teased. :(
Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on September 21, 2014, 07:52:33 AM
Oh I know. I I felt that way about the Hershey's things that were like m&ms but shaped  like kisses. I forget what they're called  they even had a vehicle shaped like the candy. It was a great option but poof was  gone.

I was thinking about them yesterday.

Kissables. I think that's what they were called.

It's hard for a kid to have something and then boom it's gone. I wanted to strangle Hershey's.
Title: Re: Living with Food Allergies, FEB 2013
Post by: becca on September 21, 2014, 09:13:50 AM
Do you all like Skippers, McC?  I can get them locally and well, the fairy still owes you a favor.  ;) 
Title: Re: Living with Food Allergies, FEB 2013
Post by: LinksEtc on September 21, 2014, 09:17:59 PM
Popping hives and sniffling when an additional egg exposure was attempted (when we could finally get her asthma into the green zone at least with meds, I mean), though-- that indicates to me that egg is at least part of this larger picture.


Just wondering how things are going with the egg & with the asthma?  How are you holding up?   


:grouphug:

Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on September 21, 2014, 09:22:48 PM
In the process of getting the cat a new home, and DD is still doing inhaled steroids twice daily along with albuterol. 

I'm afraid that we've destabilized her asthma.   :pout:

Title: Re: Living with Food Allergies, FEB 2013
Post by: LinksEtc on September 21, 2014, 09:46:03 PM
 :disappointed:


 :heart:



Why do things always have to be so difficult & complicated?  To go from the high of "passing" to this ... ugh.  I'm sorry.  Hugs to you & Sky.



Title: Re: Living with Food Allergies, FEB 2013
Post by: LinksEtc on September 23, 2014, 03:42:08 PM
DD is still having vague (relatively minor) stomach ache issues.    :pout:   


Please, please, just resolve.
Title: Re: Living with Food Allergies, FEB 2013
Post by: GingerPye on September 24, 2014, 08:45:54 AM
DS had an allergic reaction at school yesterday during lunch.  He takes his lunch; I had packed a kind of potato chip from the health food section, so not a big name brand.  The label reads safe, and he's had it 5 or 6 times with no problem. 
Yesterday, problem.  He said he started feeling throat stuff as he was eating the chips --- a burning feeling; then feeling faint and breaking out in a cold sweat.  He got his epipen out and had it sitting on the table, thinking the feeling would go away.  He said after about 10 min when it didn't go away and seemed to be getting worse, he went to the nurse's office.  She used the epi and Zyrtec (our allergist prefers Zyrtec over Benadryl), called 911, and called me.  I raced over. 

He was sitting in the nurse's office, looking okay -- he said the epi started working right away and he felt a lot better.  Ambulance took him to ER for follow-up. 
Dr at ER looked him over and said he was fine and we could go home, and to watch him.  I was a little surprised -- we had only been there about 1.5 hrs. 

Today, he can't seem to get himself out of bed.  He's exhausted.  The epinephrine really did a number on him. 

I need to talk to him about not waiting and also about not walking by himself to the nurse's office during a reaction, but that will come later.  It's been a battle to get him to take his epipens every day lately -- he only takes one --- so I'm glad he at least had one epi with him.
Title: Re: Living with Food Allergies, FEB 2013
Post by: hezzier on September 24, 2014, 08:53:50 AM
Oh GP, glad he's ok!
Title: Re: Living with Food Allergies, FEB 2013
Post by: becca on September 24, 2014, 08:55:51 AM
Wow, GP, scary!  I hope he feels ok today.  Maybe this will change his epi carrying behavior.  What kind of chips were they, so we all know to avoid them?   :grouphug:
Title: Re: Living with Food Allergies, FEB 2013
Post by: GingerPye on September 24, 2014, 08:59:25 AM
It's a regional company. I will be calling the company today.
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on September 24, 2014, 12:42:26 PM
Yes, SO glad that he's okay, Ginger!!



Today, he can't seem to get himself out of bed.  He's exhausted.  The epinephrine really did a number on him.

I wouldn't assume that is an epi hangover-- DD's been that way after every anaphylactic reaction, including a few that we didn't actually know were allergic (we might have assumed illness, or minimized symptoms, that kind of thing)-- so no epi.

Sometimes the aftereffects of anaphylaxis are as telling as anything else.   :disappointed:   

 :grouphug:  To you both, Ginger.
Title: Re: Living with Food Allergies, FEB 2013
Post by: PurpleCat on September 24, 2014, 12:43:43 PM
How scary GP!  So glad he is OK.  DD is always wiped out the next day.  It keeps her close to home and easy to watch.  Does your son have any symptoms today?
Title: Re: Living with Food Allergies, FEB 2013
Post by: LinksEtc on September 24, 2014, 01:12:45 PM
 :grouphug:   :heart:   :smooch:   GP ... how scary ...
Title: Re: Living with Food Allergies, FEB 2013
Post by: Janelle205 on September 24, 2014, 03:54:57 PM
GP, I agree with CM - every time that I have had a severe reaction, I have been completely wiped the next few days.  When I had a reaction when I was teaching preschool, I couldn't go back to work for a few days afterwards - I was pretty sure that I was too exhausted to safely make the half hour commute.
Title: Re: Living with Food Allergies, FEB 2013
Post by: SilverLining on September 24, 2014, 08:23:17 PM
GP, I'm sorry your son went through that. It's always so scary.


Yes, SO glad that he's okay, Ginger!!



Today, he can't seem to get himself out of bed.  He's exhausted.  The epinephrine really did a number on him.

I wouldn't assume that is an epi hangover-- DD's been that way after every anaphylactic reaction, including a few that we didn't actually know were allergic (we might have assumed illness, or minimized symptoms, that kind of thing)-- so no epi.

Sometimes the aftereffects of anaphylaxis are as telling as anything else.   :disappointed:   

 :grouphug:  To you both, Ginger.

Anaphylaxis is exhausting.  I'm not a doctor, but it makes complete sense to me that a person would be tired after it. (I always was.) Your body is fighting against what it sees as an invading enemy. When it's an anaphylactic reaction, that is all out war.
Title: Re: Living with Food Allergies, FEB 2013
Post by: GoingNuts on September 24, 2014, 08:46:16 PM
Oy GP, how scary.  And yes, I was exhausted after anaphylaxis too. A combo of the body's reaction to an allergen, and the effects of epi  - it's not surprising.

Hope he's feeling better by now.   
Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on September 25, 2014, 07:19:52 AM
Oh GP!  I'm glad he trusted his gut.  I hope he's better today.

If your insurance covers the AuviQ, it's so much easier to carry two of them than two epis.

I woujd be very interested in knowing the chips if they are sold up here--or anyway, since DS may venture that way for a speech tournament this year--if the issue was peanut rather than dairy.

Wow--I'm sorry he had this.
Title: Re: Living with Food Allergies, FEB 2013
Post by: GingerPye on September 25, 2014, 08:53:37 AM
Well, the company president called me and assured me that they make potato chips only, and they make two flavors only.  None of DS's allergens are used at all.  And they do random testing for gluten, peanuts, and tree nuts and always come up negative. 

So.  It seems to eliminate the chips.  I have no idea what caused the reaction.  They served a bunch of cheesy things in the cafeteria that day, and I wonder if he somehow got into some cheese on the table or on a doorknob or something, but he scoffs when I suggest it.  I dunno.  We're just not gonna know, I think. 

He and I were both exhausted yesterday; DS stayed home and slept until 2:30.  The allergic reaction and esp the epinephrine seemed to really take it out of him.  It took over an hour for him to stop feeling (visibly) jittery.  I told him it must be like running a marathon, the way the epinephrine can affect the heart etc.
 Me, I think the fear took it out of me.  I had the phone call in which they told me he'd had a reaction and they used the epi and the ambulance was on the way -- no other info; I heard the sirens as I jumped in the van to race to the school, and had no idea what I'd find when I got there.  Then I had to follow the ambulance, although by then I'd seen him and knew the epi had done its job and he was doing better.

Auvi Q is not covered by our insurance, and at $300 each --- umm, not gonna happen anytime soon.  The school is used to epipens --- the other allergic kids also have epis, so it doesn't seem wise to change it up.  But for him to carry for his own use, yeah, it would be better.  Thankfully he did shove BOTH epis into his jeans pocket today instead of just one.
Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on September 25, 2014, 09:12:59 AM
GP the two times DS has had an ana reaction at school were both after eating. The first time DS disnt use his wipes for his hands and the second time he had gone to the bathroom midway thorough lunch and touched the bathroom door (the one closest to the cafeteria) on the way out and then ate. We can only assume he picked up peanut protein from other surfaces and ingested it. His allergist agreed that's probably what happened, though he said we'll never know for sure.

Yeah--for school we keep epis, too. It's what they're familiar with (though they're teained with Auvi, too now).

Glad your DS took two epis with him! 

Title: Re: Living with Food Allergies, FEB 2013
Post by: MaryM on September 25, 2014, 09:12:24 PM
GP, I am so glad your DS is ok.   :grouphug:
Title: Re: Living with Food Allergies, FEB 2013
Post by: Janelle205 on October 02, 2014, 01:55:04 AM
This is definitely minor, but...

I HATE it when companies label their alternative food products as 'Allergen Free'.  People can be allergic to pretty much anything.  People can be severely allergic to pretty much anything.  'Allergy friendly' is fine with me.  I understand that I don't exactly have the most common allergens.

Your apple flour is NOT allergen free.  The eight epi-pens in my house say otherwise, thanks.
Title: Re: Living with Food Allergies, FEB 2013
Post by: LinksEtc on October 02, 2014, 06:26:42 AM
This is definitely minor, but...

I HATE it when companies label their alternative food products as 'Allergen Free'.  People can be allergic to pretty much anything.  People can be severely allergic to pretty much anything.  'Allergy friendly' is fine with me.  I understand that I don't exactly have the most common allergens.

Your apple flour is NOT allergen free.  The eight epi-pens in my house say otherwise, thanks.



I don't think that this is minor at all ... it's a great point.  If somebody new to allergies (with a non-top8) sees & believes that "allergen free" stuff, they could have a rxn.

Would you mind if I copied your quote and put it into this thread?
Food Allergen Labeling: Using "common sense" when assessing safety


Title: Re: Living with Food Allergies, FEB 2013
Post by: Janelle205 on October 02, 2014, 04:59:49 PM
That is absolutely ok with me, links.  Thanks for asking!

I did send an email to the company - will see if I get a response.

I appreciate that Enjoy Life labels their products as 'allergy friendly', since a good portion of them are not at all allergen free to me.
Title: Re: Living with Food Allergies, FEB 2013
Post by: LinksEtc on October 02, 2014, 08:05:44 PM
Thanks Janelle  :heart:
Title: Re: Living with Food Allergies, FEB 2013
Post by: Janelle205 on October 04, 2014, 09:22:12 PM
I got a response today from the company that I emailed about the 'allergy free' labeling.

Quote
Hi Janelle,

Thank you so much for reaching out!

So sorry if we came across as misleading by stating allergen free. We were using the term as it is defined by the FDA, but you are completely right that it is not completely accurate or transparent. We will be referring to our products as “Big-8 allergy friendly” going forward.

Thank you again and all the best!

Really, really surprised and happy about that.
Title: Re: Living with Food Allergies, FEB 2013
Post by: GoingNuts on October 04, 2014, 10:11:01 PM
Go Janelle!
Title: Re: Living with Food Allergies, FEB 2013
Post by: YouKnowWho on October 04, 2014, 11:30:12 PM
That is absolutely ok with me, links.  Thanks for asking!

I did send an email to the company - will see if I get a response.

I appreciate that Enjoy Life labels their products as 'allergy friendly', since a good portion of them are not at all allergen free to me.

If I remember correctly, Enjoy Life used to label as Allergy Free until someone had a reaction to one of their ingredients (not one of the top 8 Enjoy Life avoids).  Since then it has been changed to allergen friendly.

Kinda like make-up being labeled as hypoallergenic - doesn't mean you can't react to it, just means you and the majority of the public won't react to it (I am sadly part of the minority in many cases).
Title: Re: Living with Food Allergies, FEB 2013
Post by: Janelle205 on October 05, 2014, 12:35:38 AM
I thought I remembered that Enjoy Life used to have an 'allergy free' label, but wasn't sure.  Either way, I am happy with the way it is now.

I will not be buying anything from the company that I contacted (because, umm...apple flour), but since they see the food allergy community as part of their consumer base, I appreciate that they will hopefully change.
Title: Re: Living with Food Allergies, FEB 2013
Post by: LinksEtc on October 11, 2014, 10:40:41 PM
We were at a dinner party tonight.  Right after dd ate some salad that had some shrimp on top (I removed the shrimp so she didn't actually eat them) ... she had some mouth itching that was worse than the mild maybe-OAS symptoms that she was having.  I didn't see other symptoms.

Her IgE was negative for shrimp ... but her IgE was negative to sesame for a long time ... I wish we had done an SPT.  I guess I should let the allergist know ... I'm wondering if she'd be ok with me rubbing a little on her skin to see if anything happens ... have you guys ever done that?
Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on October 11, 2014, 11:08:50 PM
Only with makeup.

I do know shrimp naturally has antihistamines. It could be that, but you want to know of course. 
Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on October 11, 2014, 11:16:11 PM
Tonight DS had a very fine performance. Several folks from our church came to see the  show. One family brought DS cookies da stage gift "since guys don't do flowers⋅"). What I didn't say is that DS would have loved flowers).

This is a new family at church. I was completely honest about why DS couldn't have them--ands apologized profusely. She had baked just for him.

I feel bad, but I thought I should be honest.

Stupid food allergies. 
Title: Re: Living with Food Allergies, FEB 2013
Post by: GingerPye on October 12, 2014, 10:34:44 AM
oh, that's so hard when someone prepares food just for that person only, without the knowledge of the food allergies.  Urgh.  Such a nice gesture, and then you have to say no, thanks.  Difficult.
Title: Re: Living with Food Allergies, FEB 2013
Post by: becca on October 13, 2014, 11:02:13 AM
Awkkward, McC.  Hate when that happens. 
Title: Re: Living with Food Allergies, FEB 2013
Post by: YouKnowWho on October 15, 2014, 06:09:44 PM
We have had several people offer to bring us food in the upcoming days (though honestly, we are set thanks to leftovers in the freezer).  It was a weird feeling that I knew three of them could do it safely given their avoidances, Celiac, allergies and such. 

We had a meal train when Connor was born and a smaller one when Em was born but the allergic folks had to avoid.  Everyone could have eaten this time around. 

Though I think in the back of my head, I said no because I am still too nervous, kwim?  Though the allergic folks in the house get a forgiven opt out if they are not comfortable with others food.  This is not something that is generally allowed if I cook.
Title: Re: Living with Food Allergies, FEB 2013
Post by: Macabre on October 15, 2014, 07:43:57 PM
Yeah, it's hard. Church folks have traditionally brought us food during times like this (or when I had pneumonia or the flu--thiugh that's funny since DH is far more capable than I in the kitchen).  I usually try to discourage. But sometimes people just bring stuff by. If it's safe to be in the house and won't contaminate then I wilm accept it and DH will eat it--or we throw it away. But I write a thank you note. And I've had DS write thank you notes even when he has to throw something away. :-/
Title: Re: Living with Food Allergies, FEB 2013
Post by: LinksEtc on October 18, 2014, 10:02:19 PM
This may be a case where I'm unnecessarily worrying ... I'm hesitant to let dd go on amusement rides that might scare her & give her an asthma attack & then we'd be stuck on a ride where I might not be able to give her meds.  I only remember 1 time she seemed to get an asthma attack from being scared (as a toddler).  Two former pulmos told me not to hold her back, to let her go on ... I will ask her current pulmo at the next appointment.  She's been fine with the kid coasters & other rides so far ... she wants to try other rides as her 3rd grade height will allow.

I love rollercoasters ... it'd be nice to eventually have an adventurous family member willing to go on with me.
Title: Re: Living with Food Allergies, FEB 2013
Post by: Janelle205 on October 18, 2014, 10:58:35 PM
Links - Could you pretreat?
Title: Re: Living with Food Allergies, FEB 2013
Post by: PurpleCat on October 19, 2014, 07:47:25 AM
My suggestion too. 

My DD gets asthma attacks at or after  sleepovers and parties.  Too much laughing triggers it!  So we pre-treat before she goes and she is fine after.
Title: Re: Living with Food Allergies, FEB 2013
Post by: LinksEtc on October 19, 2014, 04:53:24 PM
Yes, this might be a good idea ... I'll see what the doc says.  They've had me pretreat before ... like before her scopes.
Title: Re: Living with Food Allergies, FEB 2013
Post by: Janelle205 on October 19, 2014, 04:59:56 PM
I'd definitely ask - it probably wouldn't be a horrible idea anyway - I've been to amusement parks where there are fog machines around the coasters as well, and I definitely have to pretreat.
Title: Re: Living with Food Allergies, FEB 2013
Post by: spacecanada on October 20, 2014, 08:33:48 AM
"You cannot have any broccoli until you finish your chocolate cake."

My PTSD therapy homework involves eating chocolate cake (because chocolate cake caused my anaphylactic reaction that left me with PTSD).  I don't like chocolate cake, never have, and eating it now causes me great anxiety (which should get less the more I expose myself to safe chocolate cake), so I end up begging for broccoli, corn on the cob, apples, anything else.  My husband keeps telling me the above.  *sigh*  When did broccoli become a bargaining chip?
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on October 20, 2014, 11:05:14 AM
:rofl:

I can just SO identify with that logic, spacecanada...  I'm really not laughing at you-- but the situation itself is a bit surreal, isn't it?

best wishes and happy broccoli.   You can do it!! :heart:
Title: Re: Living with Food Allergies, FEB 2013
Post by: PurpleCat on October 20, 2014, 01:36:54 PM
Funny.....last night I made a chocolate cake.  My kids ate it for dessert and I ate broccoli - cause I love it!


It's not easy after anaphylaxis.  Keep mending.
Title: Re: Living with Food Allergies, FEB 2013
Post by: spacecanada on October 20, 2014, 04:16:01 PM
I can just SO identify with that logic, spacecanada...  I'm really not laughing at you-- but the situation itself is a bit surreal, isn't it?
That's why I had to laugh (after the fact) and post it here, because only this community would understand the irony.  Maybe tonight I'll have cake as an appetiser, followed by tomato salad, and baby carrots or applesauce for dessert.  LOL  ~)
Title: Re: Living with Food Allergies, FEB 2013
Post by: CMdeux on October 20, 2014, 05:36:50 PM
 :thumbsup:

makes sense to me-- er... only then we get into the whole "life is short, eat dessert first" argument, which.... uh-- yeah-- maybe not the right sentiment there. 

 Let's hope that life is VERY VERY long instead, and that dessert has nothing to do with it either way ever again.   

I'm really, really proud of you, and so impressed that you've been willing to share your journey of recovery from PTSD.   :heart:



Title: Re: Living with Food Allergies, FEB 2013
Post by: guess on November 04, 2014, 12:49:04 PM
This morning I had a training on the roll out of Narcan/naloxone and the challenges for local law enforcement agencies have faced in implementing the opioid overdose rescue med are incredibly similar to the challenges of mindsets and acceptance of epinephrine administration.  In fact, the analogy was made to "EpiPen for anaphylactic shock".  The technical assistance for Narcan is solid, when I take a closer look at the toolkit for it I'll mentally run through for applicability.
Title: Re: Living with Food Allergies, 2013 and on
Post by: ajasfolks2 on November 06, 2014, 08:40:07 AM
The teal pumpkin still sits on the porch.

It makes me smile every time I spy it.

I hope the Teal pumpkin Project becomes a permanent fixture in Halloween "celebrations" . . .

Title: Re: Living with Food Allergies, 2013 and on
Post by: LinksEtc on November 06, 2014, 08:48:07 AM
An update - I let dd go on all the "scary" roller coasters she wanted, and she did great ... she went on things older dd & dh wouldn't go on ... she wanted to go on several more than once  :).  We pretreated (for asthma) ... even with a small virus, she was fine.   :thumbsup:

I think it won't be long before she is ready for loops.
Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on November 06, 2014, 09:53:05 AM
Sounds like she had a blast!  Great for her!
Title: Re: Living with Food Allergies, 2013 and on
Post by: CMdeux on November 06, 2014, 11:29:33 AM
The teal pumpkin still sits on the porch.

It makes me smile every time I spy it.

I hope the Teal pumpkin Project becomes a permanent fixture in Halloween "celebrations" . . .

I only just put mine away.   It made me smile, too.   :heart:
Title: Re: Living with Food Allergies, 2013 and on
Post by: SilverLining on November 06, 2014, 01:27:29 PM
An update - I let dd go on all the "scary" roller coasters she wanted, and she did great ... she went on things older dd & dh wouldn't go on ... she wanted to go on several more than once  :).  We pretreated (for asthma) ... even with a small virus, she was fine.   :thumbsup:

I think it won't be long before she is ready for loops.

I am so glad she enjoyed herself. 

Not allergy related, but I remember taking my niece on her first roller coasters.  We took her to Wonderland, and her mom had a list of what she could and could not do, but when she started in on it, I just held up my hand and said "I won't let her go on anything I won't let my own kids go on. She said fine.  Walking in to the park my niece, very calmly and quietly said "I guess you talked to my mom about what I'm allowed on?" And I told her what I had said to her mom. She quietly said to my boys "so are we allowed on anything fun?" As she looked hopefully toward to big-kid area of the park. My sons snickered and said "if we are tall enough we are allowed on".  I took pictures for her mom. Lol.  Come to think of it...this might be why brother and his wife don't like me. <shrug>

~~~

Anyway, my own living with thing fir today.


I get recall noticed from the government.  Specifically I signed up for peanut and sesame recalls.  Today I got one...sesame paste contaminated with peanut.  Ya!  Not such a big concern to me.

Made me laugh.  It's what DH and I call "a double whammy".
Title: Re: Living with Food Allergies, 2013 and on
Post by: LinksEtc on November 06, 2014, 08:01:23 PM
Oh my SL ... well, it sounds like your niece had fun  :hiding:

Funny about the recall story.

I'm having a completely lazy, rocking chair type of day ...
Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on November 07, 2014, 08:07:42 AM
Yesterday I was grocery shopping and I went to buy Sunbutter.  In it's place on the shelf.......Sesame Cranberry Peanut Butter!!!!!  Seriously, I'm not making this up!  I've never heard of that before, but what a deadly combination for my kiddo!  Sesame and Peanut?????  Her two worst allergens.

Apparently they are out of Sunbutter!
Title: Re: Living with Food Allergies, 2013 and on
Post by: Macabre on November 07, 2014, 08:35:53 AM
A big bottle of Death, as we would say in our family, lol.
Title: Re: Living with Food Allergies, 2013 and on
Post by: CMdeux on November 07, 2014, 11:23:46 AM
MMmmm... almost as good as the Thai lunch buffet for DD and I...   :hiding:
Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on November 08, 2014, 07:27:59 AM
Last night DD and two friends who are also 15 went out to dinner.  One parent dropped off, another parent picked up later, I stayed home.  It is a restaurant a few towns away that has served DD safe meals occasionally over the last few years.

They had a blast.  DD texted me after she spoke with the manager to share what she ordered, then after she ate (her text:  I'm still alive).  I was concerned but calm.  She came home happy to some safe cupcakes for dessert.  Of course she started to absent mindlessly scratch her arm and I immediately said "why are you scratching"   :misspeak: I couldn't help myself!

I think she's feeling very empowered today. 
Title: Re: Living with Food Allergies, 2013 and on
Post by: SilverLining on November 08, 2014, 07:36:42 AM
I love her text. (I'm strange that way.)

My husband can be that way with me sometimes to. I'll scratch and he be all "what's wrong, what did you eat?"
Title: Re: Living with Food Allergies, 2013 and on
Post by: SilverLining on November 08, 2014, 11:47:34 AM
The weird conversations that happen in our homes.

We are over stocked on some dry goods, to make room, DH dumped stuff out of their boxes into one large container. It's logical and saves room.

Me: did you throw out all those boxes?

DH: Ya. Why?

Me: I can't check the labels now.

DH: you read them when we bought the stuff.

Me: sometimes I miss things, I always double check before I eat.

DH: these are DARE stuff you eat ALL THE TIME.

Me: labels change, I always double check before I eat.

DH: <grumpily grabs a package and looks at it> the ingredients are written on the individual packages.

Me: OK. I'll wear my glasses to eat.

~~~

This is not a vent. This is just a day in the life of.

Edited to add: I think DARE products are all peanut safe. Some have sesame seeds and sesame warnings.
Title: Re: Living with Food Allergies, 2013 and on
Post by: CMdeux on November 10, 2014, 03:45:32 PM
You know you've been at this a long time when, in the wake of escalating/destabilizing allergy issues...

 you take action using meds that you already have on hand...

and call the allergist only because you lack refills... and that four hour process ends with a four minute phone call in which the allergist approves wholeheartedly of your ad hoc treatment plan, calls in a fresh script, and expresses relief that we're both on the same page about the possibility of a steroid burst if this doesn't work.

"Yeah, good idea, and exactly what I thought you'd say-- so we did that."

"Oh.  Great."

 :coolbeans:
Title: Re: Living with Food Allergies, 2013 and on
Post by: Janelle205 on November 10, 2014, 05:33:04 PM
CM - That is pretty much exactly where I am with my asthma management.  Pulmo gives me a ton of freedom to work things out on my own.
Title: Re: Living with Food Allergies, 2013 and on
Post by: hezzier on November 10, 2014, 07:01:53 PM
Well, technically this has to do with environmental allergies...

Are the sniffles and sore throat being caused by an on coming cold or just fall in New England?  I drove by a house today and had yard envy because they only had 4 trees, tomorrow will be day 4 of leaf clean up.
Title: Re: Living with Food Allergies, 2013 and on
Post by: LinksEtc on November 10, 2014, 10:10:16 PM
 :)  CM


When I moved and had to switch docs, I think that I experienced some culture shock.  I've now adjusted.

Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on November 14, 2014, 07:38:54 AM
Because DD is babysitting more.....and a family with a young toddler might want to ask her.....

If you are caring for a child you don't feed....I'm reasoning that you have to be very careful of spit up.....what about changing diapers?
Title: Re: Living with Food Allergies, 2013 and on
Post by: SilverLining on November 14, 2014, 03:47:34 PM
Because DD is babysitting more.....and a family with a young toddler might want to ask her.....

If you are caring for a child you don't feed....I'm reasoning that you have to be very careful of spit up.....what about changing diapers?

My rule with ds was anyone feeding him pb must clean up everything that comes out.  But, he was a kid who hated pb and tasting it always lead to projectile vomiting. 

For diaper changes, I would suggest she have rubber gloves to wear. There may be nothing left to cause a reaction. I think in most cases there would be nothing.  But the only way to know would be if she has a reaction.  So, better safe than sorry...wear gloves.
Title: Re: Living with Food Allergies, 2013 and on
Post by: SilverLining on November 14, 2014, 03:55:43 PM
Today was an "I hate stupid allergies" kinda day.

I had to take ds out, and rather than come straight home, we went to a mall.  I suddenly hit a point where I HAD to eat.  I thought I was going to pass out.  In fact I told ds what to do if I did.  We were walking past Tim Horton's, and any normal person could just go and buy a doughnut...but not me. I had to keep walking.  There were no stores that sold prepackaged safe food. I wandered around about a half hour before I finally found a Dollar Store.

I know...not major in the grander scheme of things, but it really put a damper on what was a really nice day.
Title: Re: Living with Food Allergies, 2013 and on
Post by: TT on November 17, 2014, 12:03:30 PM
Our turn. In ER with little guy. Stable now. Hives, eye swelling. Did not epi hadn't eaten anything no other symptom going on. I need a prepaid punch card. 

My guess is wheat or barley. I do my best to confine it to one inner corner of the kitchen but something must have migrated.

He's alert if a little ragged for the experience.  He deserves better than hospitals and a world full of invisible fence.   :pout:
Title: Re: Living with Food Allergies, 2013 and on
Post by: GingerPye on November 17, 2014, 12:07:05 PM
oh NO.  Hope he recovers quickly.  Hope you figure out what caused it.   :grouphug:
Title: Re: Living with Food Allergies, 2013 and on
Post by: CMdeux on November 17, 2014, 12:43:38 PM
Ugh.  This has been a horrible, very bad, no good kinda week around here.  YOWZA.

 :grouphug:
Title: Re: Living with Food Allergies, 2013 and on
Post by: GingerPye on November 17, 2014, 12:47:51 PM
no kidding
Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on November 17, 2014, 12:52:06 PM
Poor kiddo!  Hope the rest of your stay is uneventful and you can take him home soon.  Hang in there.   :grouphug:
Title: Re: Living with Food Allergies, 2013 and on
Post by: Macabre on November 17, 2014, 01:02:27 PM
I'm glad it's not worse. Hope he deals with it okay emotionally.  Hospitals can be a scary place.
Title: Re: Living with Food Allergies, 2013 and on
Post by: SilverLining on November 17, 2014, 01:14:55 PM
Ugh.  This has been a horrible, very bad, no good kinda week around here.  YOWZA.

 :grouphug:

QFT

I'm thinking of giving DS a benedryl sippy cup....like Hitch in the movie.

He HATES benedryl.  And I now have him on the liquid every four hours.  This has him cranky.  I was pulling apart his room (to despidify in case that's the problem). But he got mad and kicked me out.  Now he's doing it himself.

Fine with me.  I'm washing all the laundry.

I think something was in his bed. I cannot wash the quilts, so he'll have to take an extra (which will again make him angry.
Title: Re: Living with Food Allergies, 2013 and on
Post by: LinksEtc on November 17, 2014, 01:39:39 PM
 :heart:  TT


 :grouphug:
Title: Re: Living with Food Allergies, 2013 and on
Post by: rebekahc on November 17, 2014, 01:44:15 PM
Ugh, TT, glad things weren't worse!
Title: Re: Living with Food Allergies, 2013 and on
Post by: Janelle205 on November 17, 2014, 01:45:31 PM
SL, could you use a medication syringe?  I use one to get the nasty pred mostly past my tongue when taking it.
Title: Re: Living with Food Allergies, 2013 and on
Post by: SilverLining on November 17, 2014, 02:26:42 PM
SL, could you use a medication syringe?  I use one to get the nasty pred mostly past my tongue when taking it.

I tried that before. But his gag reflex kicks in even more with that, than with the taste.

You would think he could swallow pills by now...but apparently not.
Title: Re: Living with Food Allergies, 2013 and on
Post by: YouKnowWho on November 17, 2014, 02:55:21 PM
I'm glad it's not worse. Hope he deals with it okay emotionally.  Hospitals can be a scary place.

Or be like Em and want to go back because she likes the taste of steroids and the bed with a controller  ~)

TT - I am so sorry (((hugs)))
Title: Re: Living with Food Allergies, 2013 and on
Post by: MaryM on November 17, 2014, 06:14:20 PM
TT, so sorry.  Hope he is feeling better.
Title: Re: Living with Food Allergies, 2013 and on
Post by: ajasfolks2 on November 17, 2014, 07:18:45 PM
Ugh.  This has been a horrible, very bad, no good kinda week around here.  YOWZA.

 :grouphug:

Yup.

Have 2 kids doing lots of "wing spreading" here in my home . . . and it has me very worried that we've got a reax around the corner.

{{HUGS}} to TT and family.  Glad it was not worse!!

Title: Re: Living with Food Allergies, 2013 and on
Post by: momma2boys on November 17, 2014, 09:50:37 PM
Sorry TT, hope he is ok :(
Title: Re: Living with Food Allergies, 2013 and on
Post by: TT on November 17, 2014, 11:49:52 PM
Thanks, all. 

We went with extra heavy Zyrtec tonight and cortisone for the eczema patch flare-ups.  Mystery reactions being the lovely surprises they are we may never know but I sort of suspect underlying full cup.  It is a real humdinger of a week for all of us, innit?
Title: Re: Living with Food Allergies, 2013 and on
Post by: GoingNuts on November 18, 2014, 05:52:20 AM
 :disappointed:
Title: Re: Living with Food Allergies, 2013 and on
Post by: Macabre on November 18, 2014, 07:16:08 AM
I'm glad it's not worse. Hope he deals with it okay emotionally.  Hospitals can be a scary place.

Or be like Em and want to go back because she likes the taste of steroids and the bed with a controller  ~)

TT - I am so sorry (((hugs)))

Darn it. The hospital bracelet should have had more bling!
Title: Re: Living with Food Allergies, 2013 and on
Post by: LinksEtc on November 18, 2014, 07:46:19 AM
Do not want to discuss right now, but did not sleep well last night because of a FA issue.  must.step.away.from.ipad for a while.


 :-X

Title: Re: Living with Food Allergies, 2013 and on
Post by: LinksEtc on November 18, 2014, 10:53:14 AM
I was too excited.   ;D


"FDA Urged to Require Better Labeling of Sesame, an Allergen"
http://cspinet.org/new/201411181.html#.VGt4TV0SNvQ.twitter

Quote
November 18, 2014
The Center for Science in the Public Interest is asking the Food and Drug Administration to require that sesame be disclosed on food labels in the same manner as milk, eggs, fish, shellfish, tree nuts, peanuts, wheat, and soy are disclosed.
Title: Re: Living with Food Allergies, 2013 and on
Post by: CMdeux on November 18, 2014, 10:59:08 AM
 :happydance:  :crossed:
Title: Re: Living with Food Allergies, 2013 and on
Post by: LinksEtc on November 18, 2014, 07:51:36 PM
Reminder to self ... when happy, don't forget to actually read things.
Title: Re: Living with Food Allergies, 2013 and on
Post by: starlight on November 20, 2014, 08:18:18 AM
I am so, so disappointed. Zulily has giant tubs of cherry Mike & Ike's on sale, but they have a peanut warning! Mike & Ike's are usually peanut-free, Just Born (the supplier) is really good about making things peanut-free. Heartbreaking.  :pout:
Title: Re: Living with Food Allergies, 2013 and on
Post by: SilverLining on November 20, 2014, 09:02:20 AM
Thank you for posting that.  I always assume Mike & Ike are safe.
Title: Re: Living with Food Allergies, 2013 and on
Post by: YouKnowWho on November 20, 2014, 11:44:18 AM
My MIL tried to some shopping for me yesterday with Em.  But apparently she remembered when I mentioned that Macadamia nuts are becoming more prevalent in products.  She saw Pepperidge Farm was on sale but it mentioned just tree nuts - then she noted it was next to a bag of white chocolate chip and macadamia nut cookies so she probably assumed correctly that macadamia nuts were among the tree nuts that could be cross contaminated.

She has determined life was much easier when macadamia nuts were considered exotic.  And that rather than saying just tree nuts, it would be nice if manufacturers listed them out individually.  Which was my major complaint when coconut was added to tree nut contamination because we knew DS1 didn't react to coconut.  (And for those allergic to coconut, I am happy it was listed for you but really wish individual nuts were broken out instead of being under the general label of tree nuts).

I laughed when she said shopping with allergies is hard. Really?  (I will be completely honest that I have not braved treats for beyond Frozen fruit treats from Kelloggs and Oreos)
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on November 20, 2014, 09:14:19 PM
Walt Disney World has free apple juice and Enjoy Life cookies (or apple slices) for Christmas party guests with special diets and allergies. I danced around the snack location and took photos. :)
Title: Re: Living with Food Allergies, 2013 and on
Post by: Macabre on November 21, 2014, 11:03:30 PM
And you didn't post them?! What? 

;D

Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on November 22, 2014, 02:13:08 PM
And you didn't post them?! What? 

;D
The photos are on my DSLR with no way to upload them yet... Be patient. I will try to post my yummy (and one not so yummy) Disney food reviews when we get home. Plus a photo of my husband eating a whole tub of Tofutti frozen dessert at Animal Kingdom. (It wasn't safe for me and he didn't want it to melt.)
Title: Re: Living with Food Allergies, 2013 and on
Post by: hezzier on December 02, 2014, 06:58:51 AM
DS had allergy shots yesterday and for the first time I noticed an older gentleman wearing epi pens on his belt (pouch was by epi so had the logo on the outside).  It was a good example for DS.  I wanted to say something to the gentleman, but didn't want to invade his privacy (the office was quite busy) so DS and I discussed it in the car.
Title: Re: Living with Food Allergies, 2013 and on
Post by: LinksEtc on December 03, 2014, 01:45:09 PM
Yes, we deal with a lot of meds ... when I pull up, the pharmacist gives me a big smile, I am a familiar face ... he usually does not ask for names before getting our meds, only for the formal check they do before handing them to me.  Hmmmmm.

Am so glad one of the asthma meds finally has a counter.  That was a pain having to keep track.
Title: Re: Living with Food Allergies, 2013 and on
Post by: LinksEtc on December 05, 2014, 07:41:44 AM
Insurance networks  :-/.

Dd needs to have a small test done.

Unless I take her to a place that I had a bad experience at (not a good idea), or drive 1/2 an hour to a doc that doesn't have great online reviews (yes, I know, not too reliable) .... I am left with exactly one physician to choose from  :P .

The drive is worth it for some stuff, but not for this (to me).


Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on December 07, 2014, 06:27:23 AM
DD has been invited to another party in two weeks.  She bombarded me with questions from the host about food.....at a really bad time.  I lost it!  Not now!  I need a break from your allergies!  If you don't know the answers, see me tomorrow!   :misspeak:
Title: Re: Living with Food Allergies, 2013 and on
Post by: Macabre on December 09, 2014, 12:35:21 PM
I miss being able to order a sandwich or a wrap--usually for the taste of it buy right now for the convenience of it. I am working my last day at work at a coffee shop. It's past noon. I am really really hungry. The only things I can eat here are oatmeal and cheese sticks. I've already had oatmeal this morning.

There is a Little Ceasars a few doors down. I don't have time to leave to get lunch. So I will go to LC, buy a pizza and eat two pieces and out the rest in my car. It is higher in calories. Blah.
Title: Re: Living with Food Allergies, 2013 and on
Post by: GingerPye on December 09, 2014, 12:45:19 PM
I miss the convenience, too.  Nothing convenient about food allergies.   :tongue:
Title: Re: Living with Food Allergies, 2013 and on
Post by: hezzier on December 09, 2014, 01:21:45 PM
Agreed, I don't think people understand that you just can't be spontaneous with food allergies...there always has to be a plan for food, and then the back up plan, and of course, the back up to the back up.
Title: Re: Living with Food Allergies, 2013 and on
Post by: CMdeux on December 09, 2014, 03:16:14 PM
Yes.

The amount of time and energy that consumes is kind of mind-boggling for those that don't deal with FA's.

Title: Re: Living with Food Allergies, 2013 and on
Post by: ajasfolks2 on December 09, 2014, 04:10:07 PM
Yup!  And the back up plan should not be  "I've epinephrine with me so maybe I'll take this chance . . . "  (Hi HO!  Silver bullet & I should be ok?!)

So hard to get this through to kids / teens / young adults / complacent adults . . . and uneducated food allergy folks.

Title: Re: Living with Food Allergies, 2013 and on
Post by: Janelle205 on December 09, 2014, 04:13:24 PM
Yup!  And the back up plan should not be  "I've epinephrine with me so maybe I'll take this chance . . . "  (Hi HO!  Silver bullet & I should be ok?!)

Exactly.  Unfortunately, the end stage back up plan for me is that I just won't eat anything, which lots of people have a real problem with for some reason.


Ooh.  Idea.  I'm going to tell my doctor that I'm overweight to give myself a food allergy cushion for when I can't find safe food.  Totally legit, right?
Title: Re: Living with Food Allergies, 2013 and on
Post by: CMdeux on December 09, 2014, 05:12:31 PM
Uhhhhh.... sure.   ;D   Ooooooohhhhhh... so that was my plan.  Good to know.  LOL!
Title: Re: Living with Food Allergies, 2013 and on
Post by: LinksEtc on December 14, 2014, 01:33:22 PM
Ugh, I'm sick of sickness.

Younger one just got over a stomach bug that was going through her class.

Now older one is wiped out with some nasty probably virus that's been going through her class. 

What do you want to bet they next swap ... I'm thinking of inc younger dd's adthma meds preemptively ... this is not going to be pretty.

Next will come the note from school warning me that dd has a lot of absences.

& since there is only 1 of me, older relatives who need my help are not too happy.

What can you do?

Title: Re: Living with Food Allergies, 2013 and on
Post by: starlight on December 14, 2014, 02:06:38 PM
I'm sitting in LAX, it's lunchtime. Gate guru app said there was a McDonald's in this terminal, so I was just going to grab some mcnuggets for lunch. Except the terminal is under construction and every other (unsafe) eatery is still up and running EXCEPT McDonald's. So my lunch got to be a king siE Hershey's. My flight is 4 hours. So pissed. So hungry. Ugh.
Title: Re: Living with Food Allergies, 2013 and on
Post by: Macabre on December 14, 2014, 02:39:36 PM
Oh ugh.

You should totally make that TWO Hershey's.

Title: Re: Living with Food Allergies, 2013 and on
Post by: CMdeux on December 14, 2014, 02:43:42 PM
And a vodka tonic.   :misspeak: 

 :grouphug:  Here's to a shorter-than-expected flight.
Title: Re: Living with Food Allergies, 2013 and on
Post by: GoingNuts on December 14, 2014, 05:41:32 PM
Ugh Starlight, that is miserable.  Hope you can fall asleep to make the time go faster. And help you ignore the tummy rumbles.
Title: Re: Living with Food Allergies, 2013 and on
Post by: starlight on December 14, 2014, 06:06:52 PM
Got lucky, we left a few minutes early and are arriving 20 minutes early. And I'm landing at an airport with multiple places to grab real food.  :happydance:
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on December 17, 2014, 01:18:40 PM
Where I work is usually very allergy-aware...

But today is the Christmas staff meeting and potluck and they just brought nearly eighty boxes of Reeses peanut butter cups and Hershey's almond chocolates into my classroom (the general meeting place for big events like this) to hand out all staff members.   ???

Needless to say, I'm not going in that room for the rest of the day and will have no part in cleaning it up (which is normally my responsibility.)  I'm sitting in my office (adjoining the classroom) and not in a very happy place mentally.  Potlucks are tough enough, yet alone this.  (And to know there's a box of nutty chocolates with my name on it only makes it worse.)  :pout:
Title: Re: Living with Food Allergies, 2013 and on
Post by: CMdeux on December 17, 2014, 02:02:43 PM
Wow.  That is bad.  I'm sorry.

Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on December 17, 2014, 02:16:22 PM
Wow.  That is bad.  I'm sorry.
I should have posted that in Vent and Delete... oops.
Title: Re: Living with Food Allergies, 2013 and on
Post by: SilverLining on December 17, 2014, 04:45:32 PM
Wow.  That is bad.  I'm sorry.
I should have posted that in Vent and Delete... oops.

It belongs where you want it.  It IS about living with allergies....and pig headed people.
Spoiler (click to show/hide)
Title: Re: Living with Food Allergies, 2013 and on
Post by: Macabre on December 17, 2014, 04:54:28 PM
Oh wow.  Just wow. That is horrid.  :console:
Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on December 17, 2014, 05:22:00 PM
That is so thoughtless!   :grouphug:
Title: Re: Living with Food Allergies, 2013 and on
Post by: GoingNuts on December 17, 2014, 07:26:31 PM
Awful.  :console:

 I be been handing out  :paddle: and  :bonking: right and left today, because so many people seem to deserve them. Hope there are enough to go around.
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on December 18, 2014, 08:39:36 AM
Three boxes of chocolates were left on my desk late yesterday afternoon (after I left my office) because I neglected to pick them up yesterday for my department staff.  I was so scared to come into work that I couldn't sleep.  I called the head of maintenance to go into my office and remove them before I arrived, and he did (leaving the cards behind).  He deserves a hug, at least.

Kryptonite - the perfect allergy analogy, isn't it?  Superman wouldn't willingly go into a room filled with Kryptonite, even if it was in lead boxes. 

As my husband says, Christmas is like a war zone for people with allergies - allergens are flying around everywhere and pop up in places they normally wouldn't.  Be careful everyone, and take care this Christmas.
Title: Re: Living with Food Allergies, 2013 and on
Post by: CMdeux on December 18, 2014, 11:05:50 AM
Christmas is like a war zone for people with allergies - allergens are flying around everywhere and pop up in places they normally wouldn't


Precisely.

On a happier note, my daughter's boyfriend and his family are the most amazing people EVER-- since they have come up to speed in ways that astonish me-- in just a few months.

Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on December 19, 2014, 07:18:32 AM
My gluten free friend stopped by to drop something off yesterday.  I answered the door wearing an apron and I was covered in white powder.  She looked at me with big eyes and I immediately said, oh no!  It's safe confectionery sugar - not flour!  Yes, I roll and cut my cookies with confectionery sugar.  Even the ones that are not gluten free.  Less airborne flour in my house.
Title: Re: Living with Food Allergies, 2013 and on
Post by: Janelle205 on December 20, 2014, 05:32:52 AM
Note: I am not trying to make light of people getting very sick and dying.

The current caramel apple listeria outbreak is obviously a huge deal on pregnancy information stuff all over the internet.

And guess who doesn't have to worry about it at all?  Allergy win.
Title: Re: Living with Food Allergies, 2013 and on
Post by: SilverLining on December 20, 2014, 06:30:57 AM
I get what you mean Janelle.  I would never wish harm to anyone. But I didn't need to worry during the long peanutbutter recall.
Title: Re: Living with Food Allergies, 2013 and on
Post by: CMdeux on December 20, 2014, 06:16:44 PM
Exactly-- it's just ironic for us with food allergies that there is occasionally a time to be pretty breezy and dismissive of food safety awareness....

and it's just inverted for us, that's all.   :insane:
Title: Re: Living with Food Allergies, 2013 and on
Post by: SilverLining on December 27, 2014, 11:14:15 PM
Well, it was bound to happen eventually.   :-/

Someone in my family knows someone who was cured of their allergies. I think it was through acupuncture, but I was busy keeping my jaw clenched so wasn't really listening.

The most infuriating part was....they set up the conversation.  A fancy dinner, and not once were allergies a topic of discussion. It was really pleasant. I'm sure, they had intended to raise this when the discussion naturally rose...but since it didn't, one of them just, out of the blue, mentioned about isn't it great that there's a cure for allergies now.

I let it go.

And the other person carried on the conversation.

And I let it go.

And eventually they both stared at me....Had I been asked a question? I stopped eating and looked up. Yup...they were waiting for a response from me.  So, I said something like "the only food allergies that anyone can actually cure are the ones they diagnose and you never even knew you were allergic to anyway".

And I went back to eating.

And one of them said "no her son really was allergic to antibiotic, and after this treatment he can have it with no problems".

And I said "hallelujah".

I didn't ask all the questions like "what kind of reactions" and "what kind of doctor diagnosed the allergies".

I didn't point out it was probably a sensitivity as opposed to an allergy.

I didn't ask if a real doctor was involved at all (because it's so dangerous to just try it after a treatment, but people do).

I didn't 't feel like arguing at Christmas. And I know they would have either just made up answers, or said I was making up excuses to not get this magical treatment.
Title: Re: Living with Food Allergies, 2013 and on
Post by: Macabre on December 28, 2014, 01:18:40 AM
Sorry SL. :-/


I learned something about that this week at my allergist visit. I have been allergic to penicillin all my life--or have avoided it all my life since I had a reaction as a small child. My doctor laid everything out for me so helpfully--how we can do an IgE blood test for it (I assume ImmunoCAP). And if that comes back negative I shoukd be fine for a challenge. But if not, there's something else we look at. Anyeay, she said if it's a dire case, there is a way to become desensitized to an antibiotic within a 24 hour period but it has to happen in a hospital during that time. And then the desensitization may not last beyond the course of meds. So you can be desensitized for that time period but it may ware off after you're done.

I had no idea! 

But drugs and bees and food are all so different in treatment.

It sounds to me like you took the high road sL!
Title: Re: Living with Food Allergies, 2013 and on
Post by: CMdeux on December 28, 2014, 02:27:59 AM
Interestingly, our Dr. Awesome is a major guru for that rapid abx desensitization protocol.   :yes:

This is a happy thing, really-- since his risk tolerance is high enough that we were able to get through 6y of SCIT for aeroallergens with DD, and it would quite probably never have been possible with anyone else.  He's amazing.  And smart.  VERY smart.  He may be the smartest M.D. I've known.

Title: Re: Living with Food Allergies, 2013 and on
Post by: GoingNuts on December 28, 2014, 07:57:31 AM
Yes, that was suggested as a possibility for DS when he was little; he was allergic to both penicillin and cephalosporins, and with a strong family history of Stevens-Johnson syndrome reactions to Sulfa Drugs his allergist mentioned that as a possibility if absolutely necessary.

He seems to have outgrown his penicillin allergy.  :thumbsup:
Title: Re: Living with Food Allergies, 2013 and on
Post by: guess on December 28, 2014, 03:13:35 PM
Having their little plan backfire in their face might make them think twice before trying it again.  Don't want an answer -- don't ask!

Anyhoodle, found a quote from an allergy parent on life with food allergies.

Quote from: Michael Pistiner
As a parent of a child with a nut allergy, Pistiner empathized with parents who have to educate their peers even as they're trying to protect their children. It can be difficult to pass on that responsibility to others, he added.

"I'm trying to teach my mom how to use an EpiPen and read labels, and she's not taking me seriously, and I'm a pediatric allergist," he said. "Imagine if I'm a school teacher, imagine if I'm a stay-at-home mom. Now who's going to take me seriously? It's a really hard position to be in."


Brennan, G. (2010, March 26). Nut-free school spurs ed campaign. Retrieved December 28, 2014, from http://www.capecodtimes.com/article/20100326/NEWS/3260314?template=printart
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on December 28, 2014, 06:15:04 PM
And don't forget bee pollen... it can cure all your allergies.   ~)
Title: Re: Living with Food Allergies, 2013 and on
Post by: YouKnowWho on January 07, 2015, 04:34:26 PM
Aye yi yi.

DD has a different view on allergies than her brothers, for sure.  DH came home from Panda Express and handed her the fortune cookie as he had done previously.  Pre-reaction, I wouldn't care.  Post reaction, I care, kwim. 

I grabbed it out of her hand and told her to wash up (tossed it) much to her dismay.  I offered another cookie and calmly tried to explain that it had no ingredients list (may have, but she tossed it) and I didn't know if it had nuts or was on shared lines.

"But Mommy, the shot in the leg hurts less than the one in the toe!"  DD has had two visits to the ER in the last few months.  One involved a splinter up her toe nail and her foot turning colors - she had to have a shot in her toe so they could cut the nail (her screams were louder than two incoming sirens on ambulances).  And then her reaction to macadamia nuts (she has since had a hazelnut reaction as well). 

So while I am comforted that she is not scared of the epi pen, now I need to figure out how to explain to a 4yr old that it's not good allergy management practice to eat first, jab later.  ~)
Title: Re: Living with Food Allergies, 2013 and on
Post by: MaryM on January 14, 2015, 07:42:44 AM
DD does not have a huge appetite like her brother, but I do expect her to eat her lunch at school.  Most days I send a hot lunch in a thermos.  Both kids prefer this to sandwiches.  I have noticed that her thermos has been coming home with almost the same amount as I sent.  She will tell me she ate a lot or that she asked the Lunchroom Aide if she could be done and they said yes, or take 2 more bites.  Last night I asked her why she isn't eating.  I swear she ate one bite of what I sent in yesterday...She wanted to talk to me about it away from DS.  We went upstairs and she told me that lots of kids have milky things and she is worried it will cross contaminate her food  :-/.  I asked her about the peanut free table and she said they all have milk there too.  I told her we can arrange for her to sit at the end of the table with only one person next to her and she said that is where she tries to sit.  I reassured her that since her food is in a thermos that it is really quite safe and she should not be afraid to eat it.  This makes me very sad.   
Title: Re: Living with Food Allergies, 2013 and on
Post by: SilverLining on January 14, 2015, 01:25:40 PM
That is sad.  :grouphug:
Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on January 14, 2015, 01:43:19 PM
Mary, when my DD was young, I use to pack colored paper place mats (from the party store) with her lunch.  It gave her a visual space on that table that was hers.  Maybe that can help?
Title: Re: Living with Food Allergies, 2013 and on
Post by: CMdeux on January 15, 2015, 06:35:53 PM
Another day, another pair of allergens.


{sigh}


Dog and cat both.  Didn't test other animals, as we already know that rabbit is positive too.

Alternaria (outdoor mold) also really big-- impressively so, in fact-- flare on that one was the diameter of a baseball. 

I'll post photos.

We're probably going to do shots-- and in that case, we'll top off the grass, tree, weed pollen mixture in the other arm, as well-- since it's been three years and that one is wearing off a touch.



Title: Re: Living with Food Allergies, 2013 and on
Post by: hezzier on January 15, 2015, 07:13:55 PM
Does everyone end up re-doing allergy shots?
Title: Re: Living with Food Allergies, 2013 and on
Post by: CMdeux on January 15, 2015, 07:29:58 PM
Nah-- for some people they REALLY stick.

DH seems to be in that category.  I have no idea whether or not I am, since I didn't do them long enough.

Here are her photos:

Spoiler (click to show/hide)

Doc agreed that the one remaining cat is likely to be a low felV1 shedder (from our description), and that desensitization is likely the way to go.

Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on January 19, 2015, 11:10:19 AM
Five "mild" reactions in the past month and a half (two should have had Epi :hiding:), plus two scares, and the cumulative anxiety has run me over.  I am making an appointment with a psychologist, although I think I should just move to my own allergy-free island paradise where I grow all my own food from scratch.

Wouldn't that be nice, an allergy-friendly island where we all understand allergies, labels are 100% reliable, people aren't eating everywhere and at all times, no food in the classroom, people wash their hands after eating, and everyone is kept safe and worry-free?  Sign me up!

Yep, that kind of day.  I may make some safe cookies later to cheer me up.  (Oh, the irony!)
Title: Re: Living with Food Allergies, 2013 and on
Post by: SilverLining on January 19, 2015, 12:50:33 PM
Sorry about all the cr@p you've been through.
Title: Re: Living with Food Allergies, 2013 and on
Post by: GoingNuts on January 19, 2015, 12:52:12 PM
I'm sorry spacecanada.  Sounds like you've really hit a rough patch, and are doing the right thing by getting some assistance in dealing with it.  :console:
Title: Re: Living with Food Allergies, 2013 and on
Post by: guess on January 19, 2015, 12:54:41 PM
I'd like one of those amazing treatments supposedly on the near horizon that are bandied about.

Space, I wish you best of luck, health and supportive thoughts your way.  You've always tackled the stress head on with a plan and goal.  :cocktail:
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on January 19, 2015, 01:14:30 PM
Thanks everyone.  Sometimes I just need to vent and get some reassurance from someone other than my husband.  This site is the best.  Psychologist appointment will be next week.

Now, the big dilemma of the day: which type of chocolate to use in basic chocolate chip cookies: Enjoy Life dark chocolate morsels, Enjoy Life mega chunks, or Camino semisweet chips?
Title: Re: Living with Food Allergies, 2013 and on
Post by: starlight on January 19, 2015, 07:39:58 PM
spacecanada, very basic chocolate chip cookies usually have semi-sweet. Or, you know, you could just use some of each.  :happydance:  ;D  :hiding:

My self-created allergy drama: I bought a box of enjoy life apple cinnamon bars. They have sunflower(?) butter in them. I know I'm not allergic to anything in them. But I'm having a hard time ramping myself up to try one, my self-preservation instinct just flares up. I've never tried any of the nut-free imitation butters, they all just look too similar and freak me out and I thought this would be a way to ease myself into having at least one new healthy(-er than usual at least) option.

Title: Re: Living with Food Allergies, 2013 and on
Post by: CMdeux on January 19, 2015, 10:57:42 PM
Which type?



YES.

There.  That was easy, now wasn't it?   ;D
Title: Re: Living with Food Allergies, 2013 and on
Post by: Macabre on January 20, 2015, 06:27:56 AM
Starlight are you thinking it will be easier to try it for the first time as an ingredient and not just out ifnthe jar?  I might buy a jar (do not get the kind that is not mixed--not sure if they still make the one that needs stirring). Grab a (totally PF spoon--keep it in a ziplock or something), head to the nearest hospital and eat it. You will be fine of course (if you're not allergic to sunflower). I think I would have an easier time dealing with one ingredient, well, one as in sunbutter, than several at a time.

But yeah--you know what--if your life is complete without Sunbutter maybe don't worry about adding the new bars, yk?
Title: Re: Living with Food Allergies, 2013 and on
Post by: MaryM on January 20, 2015, 07:51:48 AM
Starlight - the first time I bought Sunbutter - 11-12 years ago- I opened the jar, smelled it and then waited for DH to cme home from work.  I smelled so much like pb.  I was afraid to try it.  I eventually did and loved it but I can't eat it anymore.  Not sure if I'm allergic to it (I eat plenty of things with sunflower oil) or if it's OAS.

Spacecanada - good luck.  I have been following your posts and I think you are amazing.  I'm sorry you've had such a rough time. 

With regards to my DD.  I have an appointment for her in early February with a psycologist at Mt. Sinai.  I do think she is doing a bit better but still needs some help.
Title: Re: Living with Food Allergies, 2013 and on
Post by: CMdeux on January 20, 2015, 08:51:59 AM
Just to be clear, my post above was about chocolate.

We had to add food coloring to our first jar of Sunbutter.  I (truly) couldn't try it otherwise.  It was too, too, too much like the real thing.

DD still doesn't like it. 
Title: Re: Living with Food Allergies, 2013 and on
Post by: starlight on January 20, 2015, 08:58:00 AM
Starlight are you thinking it will be easier to try it for the first time as an ingredient and not just out ifnthe jar?

Yep, that was the idea. I highly doubt I'll ever try sunbutter straight out of the jar - the smell of peanuts sends up the red flags and chimes the warning bells, so if the fake stuff smells anything like the real stuff it'll never happen. I'm just looking for a somewhat-healthy non-perishable snack food that isn't on the salty spectrum (just not my thing). I'm a ridiculously picky eater and the only foods I've ever really truly enjoyed have melted gooey cheese, red meat, or loads of refined sugar so it's something I've been trying to find my entire life. Thought there may be a chance this might be it.
Title: Re: Living with Food Allergies, 2013 and on
Post by: Macabre on January 20, 2015, 10:11:28 AM
I've never liked the smell of PB. Even as a child, I thought PB cookies were such a gross idea. I couldn't inagine why anyone thought they were good.

To me, SB does not smell like PB at all. The smell of PB is abhorrent to me. I love this stuff, though. That's not to say you would, but I wanted to say that at least one person here doesn't equate SB to PB in terms of smell or taste.

Even if we could go back to PB, I never would. I love SB--but have no plans to eat PB again. Ick.
Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on January 20, 2015, 10:39:57 AM
I'm the opposite.  I think sunbutter smells like peanut butter and the taste is very close.  Maybe because I have always eaten natural peanut butter that has to be stirred (skippy and jiff taste fake like shortening and are too sweet to me)  We buy the kind of sunbutter that must be stirred.  I keep it in the fridge so it does not re-separate.  DH does not like it refrigerated.  So yes, we have two jars open at all times - LOL!  I don't have the energy to stir it every day!
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on January 20, 2015, 10:46:51 AM
It took me years to try Sunbutter, and like many above, required the assurance that I could get help from a loved one and/or medical personnel if needed.  It is just too similar to peanut and nut butters.  I think we bought one tub and it lasted over a year.  Oddly enough, we eat a lot of it now (mostly my husband), but we make it from scratch: roasting and grinding safe sunflower seeds.  (I still won't eat anything made with Sunbutter that I didn't make myself.)

Again, you don't need to add it to your diet unless you are trying to fill some nutrition deficiency that sunflower seeds can offer.  Enjoy Life makes other granola bar flavours that taste good too.  Libre Naturals granola bars are better, in my opinion.

Other healthy snack options: 'fudge babies' from chocolatecoveredkatie.com are pretty amazing and healthy too., seed and fruit trail mixes, granola, dried fruit, energy cookies, or even homemade granola bars. 

If you plan on trying those granola bars, make sure you are in a place where you feel safe and have plenty of time, then reward yourself for trying something new.  We are here for you!

Oh, and the answer turned out to be dark chocolate morsels in one batch and semisweet chips in the other.
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on January 23, 2015, 09:22:46 AM
How much longer until our next Disney vacation?  I need a break from all this allergy drama (danger)...

Today's challenge: trying to keep my office at work nut-free without painting a big target on my door, kwim?  An incident yesterday sent me home for the whole day (loose nuts in my office), and now I have to figure out what steps need to be taken to keep me safe.  But I don't want to paint a vulnerable/fragile target on my head or be a pain in the @$$ to others either.  I have been bullied about my food allergies by a former employee.  Apparently after I leave, my office becomes a through-traffic route for people using the room next door.  This has to stop.  Work is willing to work with me to create a solution, but I just don't know what to do.  Suggestions?
Title: Re: Living with Food Allergies, 2013 and on
Post by: CMdeux on January 23, 2015, 09:29:44 AM
Well, what traffic path is in use when you are there?

That needs to be THE traffic pattern.

If there are multiple entry points into the room, BLOCK the one that you do not want people using.  (Yes, I realize that actually physically doing so may be impossible due to fire regulations, but...  signage ON that door stating "emergency use only, please use main entry/exit" should do the trick-- along with a lock on the ENTRY to the room, but not the exit from it, if the lock can be set that way).

Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on January 23, 2015, 10:00:28 AM
My staff are the only ones using the room whilst I am here, so we move from the office to the classroom and back through our door, as it should be.  The office itself gets locked when I leave, but people using the classroom after hours have keys.  I will see what I can do about signage to reduce traffic.  That's a really good option if I can get it to work.  (If I can get people to abide by the signage...)
Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on January 23, 2015, 02:27:10 PM
A modified version of what I originally posted as requested.

It's been a very good day living with allergies.  I just sent this email to say thank you for a great dining experience.



Good Afternoon!

I want to take this opportunity to thank you and your team for excellent service at XXXXXXXXXX today, January XX, 2015.

I took my daughter to lunch at your restaurant.  It was her first visit, my second.  My daughter has multiple food allergies and eating out is a big treat for her.

As much as food allergies can complicate eating out, so can a major cumin recall.  I have been watching, reading, and trying to stay current on this subject.  This cumin is contaminated with peanut protein.

My daughter carries paper cards with a list of her allergens to give to wait staff.  This is what today's updated one looks like.

(insert chef's card)

Our waitress spoke with my daughter directly and professionally.  My daughter explained what she wanted to have for lunch and our waitress went to speak with the kitchen staff to be sure her choices could be prepared safely.  Her meal was settled and was to include fries and there was confirmation the oil the fries are cooked in is safe.  A very short time later, our waitress returned to tell us a kitchen person told her that veggie burgers are also cooked in the same oil as the fries and they might contain cumin.  My daughter chose a baked potato instead.

I was impressed.  That extra thought, that extra consideration, the attention to details about your menu and how different foods are cooked all appreciated.  My daughter was totally comfortable and happy and stated, "Wow!  They really understand!".

We had a fantastic, very delicious lunch.

Our experience speaks well of your organization, your staff training, and the excellence in the staff you chose to employ.

I don't think enough people speak up when there is a job well done.  I wanted to do so today.

Thank you for a wonderful and safe dining experience!




Now DD is off to a Sweet 16 Sleepover with nut free cupcakes & safe chocolate to share, her gear and her meds.
Title: Re: Living with Food Allergies, 2013 and on
Post by: momma2boys on January 23, 2015, 03:03:23 PM
 :thumbsup: that is awesome!!
Title: Re: Living with Food Allergies, 2013 and on
Post by: CMdeux on January 23, 2015, 03:23:37 PM
 :happydance:  WTG, Purplecat!
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on January 23, 2015, 03:31:10 PM
What a fantastic story!  It warms the heart every time I hear of places that truly get it.  So happy your DD had a positive experience.
Title: Re: Living with Food Allergies, 2013 and on
Post by: GoingNuts on January 23, 2015, 06:08:50 PM
Nice, PC! :thumbsup:
Title: Re: Living with Food Allergies, 2013 and on
Post by: guess on January 23, 2015, 06:10:45 PM
PC, I really like that verbiage.  Can you save a version with the personal info redacted?  I'd love to be able to use it as a template. 
Title: Re: Living with Food Allergies, 2013 and on
Post by: Macabre on January 23, 2015, 11:47:39 PM
Wow. That is great. And your email--how easy would it be to just not send it. But you did. It is amazing. 
Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on January 24, 2015, 08:30:02 AM
PC, I really like that verbiage.  Can you save a version with the personal info redacted?  I'd love to be able to use it as a template.


Sure, when I delete in a few days, I'll leave a modified version.
Title: Re: Living with Food Allergies, 2013 and on
Post by: ajasfolks2 on January 24, 2015, 09:47:28 AM
Beginning to get preliminary overture letters from colleges and universities for DS  . . .   and it's clear he does not want to go away very far.  Part of that is the LTFA, but part is also the closeness of our family.

This is so exciting, but so hard and scary.

Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on January 24, 2015, 10:23:37 AM
DD has gotten so many in the last two weeks as well as emails.  We are pretty sure it is because she took the PSAT. 

She is not giving much thought to her allergies at the moment, just looking at where she might be able to go to study what she wants and play softball.  Makes weeding the mail a bit easier!
Title: Re: Living with Food Allergies, 2013 and on
Post by: LinksEtc on January 26, 2015, 07:52:46 AM
Dd's tongue itched slightly last night after eating tacos  :-/ ...

I'm going to start writing down these seemingly random episodes and maybe a pattern will emerge over time that Dr-FA-Yoda or I can figure out.  I'm not too worried about it ... just wondering what's up.


 :coffee:

Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on January 26, 2015, 08:16:27 AM
First thing I thought of is "cumin"?
Title: Re: Living with Food Allergies, 2013 and on
Post by: rebekahc on January 26, 2015, 08:49:39 AM
First thing I thought of is "cumin"?

Me too.
Title: Re: Living with Food Allergies, 2013 and on
Post by: hezzier on January 26, 2015, 09:17:32 AM
Storm prep w/FA...important to get to the store before safe brands are gone.  I went Sunday so we are all set.  I should throw an extra loaf of bread in the freezer.
Title: Re: Living with Food Allergies, 2013 and on
Post by: LinksEtc on January 26, 2015, 09:35:49 AM
I'm pretty sure given the foods we eat, she's had cumin without problem, but will keep it in mind.

She's had minor symptoms where walnuts were suspect, shrimp was suspect, etc.

Sulfites? , OAS?, histamine? ...  :dunno:

and then there's the low dose of sesame we give her as per our allergist's instructions... but she's been doing great with that .... complicates things a bit though when trying to figure this stuff out.

For now, I guess I'll just write this stuff down (I'm good at that  :P)... I have great confidence in our allergist, so I think that I'll just leave this mess for her to figure out  :P  ...

I don’t want to avoid anything that dd doesn't need to avoid so will just proceed cautiously I guess.




Title: Re: Living with Food Allergies, 2013 and on
Post by: guess on January 26, 2015, 09:38:46 AM
They mean contaminated cumin currently in the food supply that was subject to the expansive recall list.
Title: Re: Living with Food Allergies, 2013 and on
Post by: LinksEtc on January 26, 2015, 09:45:28 AM
They mean contaminated cumin currently in the food supply that was subject to the expansive recall list.


Dd isn't peanut allergic or TN (as far as I know).
Title: Re: Living with Food Allergies, 2013 and on
Post by: guess on January 27, 2015, 12:51:59 PM
I know this isn't my fault and it's beyond my control but I'm feeling really responsible that I can't get a milk free classroom.  I know from time to time some kids can get a milk free room but not for us and I just can't set this child up in a classroom of what I know will kill him.  They keep offering a peanut free classroom as an option.
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on January 27, 2015, 12:55:34 PM
That is so frustrating, guess.  People often forget that other allergens can be just as dangerous as peanuts and tree nuts.  Or maybe they just don't know that they can be.  I hope you will be able to find a safe solution. 
Title: Re: Living with Food Allergies, 2013 and on
Post by: CMdeux on January 27, 2015, 03:10:29 PM
Totally get it-- it's like the restaurant chef that reassures you that they have a lot of "gluten free" selections when you mention your shellfish allergy.


 :dunce: :insane: 


I've always thought that restaurants might secretly be doing it just to drive margarita sales, because it sure makes ME want to drink after a couple of iterations.  But I don't think that the school district has a liquor license, so that can't be it.


 :grouphug:

We got told the same thing in 2004 re: a peanut-free room, by the way.  Which is how we got where we are now.   :console:  I don't have good advice for you.  Other than the obvious that letting them kill your child to 'see' your perspective is probably not the best path forward.  {sigh} 



Title: Re: Living with Food Allergies, 2013 and on
Post by: guess on January 27, 2015, 03:21:32 PM
lmbo at last part.  Not funny but funny, KWIM?  That's totally what it would take which defeats the purpose of going in the first place.
Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on January 27, 2015, 03:25:25 PM
PC, I really like that verbiage.  Can you save a version with the personal info redacted?  I'd love to be able to use it as a template.


Done.  It's on page 63.
Title: Re: Living with Food Allergies, 2013 and on
Post by: CMdeux on January 27, 2015, 03:43:11 PM
lmbo at last part.  Not funny but funny, KWIM?  That's totally what it would take which defeats the purpose of going in the first place.


I totally get it.

How did I eventually put it mentally?

Oh yeah--


Disclaimer:  {DD} may not be suitable as a starter project for experiential learning in food allergy and anaphylaxis.  Please be advised that this particular individual is recommended for advanced participants only.

 :P  Still just as true as it was in 2004.

Title: Re: Living with Food Allergies, 2013 and on
Post by: notashrimpwimp on January 27, 2015, 06:15:46 PM
Well-meaning advice, while appreciated, offers no protection.

Every day feels like Russian roulette when I turn beet red and develop hives within minutes of setting foot somewhere. Especially when I hadn't eaten anything prior due to having no appetite.

I wish it was due to something I ate because that would signal something I could change and prevent. Instead I exist on Benadryl, inhalers, and injectable epinephrine.

P.s. and wearing a mask apparently doesn't prevent worsening symptoms either.
Title: Re: Living with Food Allergies, 2013 and on
Post by: Linden on January 27, 2015, 06:28:59 PM
Why oh why did I give a factual answer to the question, "What is DS eating these days?"  :insane: :insane:.  The only correct answer is a vague one like, "Oh lots of things" and change subject immediately.

I forgot that outside of allergy-land people believe in forcing a child to eat something if he or she doesn't like it.  Yeah that doesn't work in my world.

Title: Re: Living with Food Allergies, 2013 and on
Post by: Janelle205 on January 27, 2015, 07:00:58 PM
Why oh why did I give a factual answer to the question, "What is DS eating these days?"  :insane: :insane:.  The only correct answer is a vague one like, "Oh lots of things" and change subject immediately.

When I'm asked about myself, the general answer is: "Oh, lots of cardboard, and occasionally some styrofoam."
Title: Re: Living with Food Allergies, 2013 and on
Post by: Linden on January 27, 2015, 07:45:08 PM
When I'm asked about myself, the general answer is: "Oh, lots of cardboard, and occasionally some styrofoam."

 :rofl: :rofl: That is such a great answer!
Title: Re: Living with Food Allergies, 2013 and on
Post by: CMdeux on January 29, 2015, 02:08:10 PM
I just love those days when you get texts like this from well-meaning friends:

"Wow-- see the news about probiotics and peanut allergies??"

{Not.... particularly...  but I can probably guess....  {sigh}   Goes to look at google news.}

http://www.telegraph.co.uk/news/worldnews/australiaandthepacific/australia/11374305/Fatal-peanut-allergies-could-be-cured-by-probiotic-bacteria-say-Australian-doctors.html


and more tellingly--

http://www.independent.co.uk/life-style/health-and-families/health-news/peanut-allergies-could-be-cured-as-trial-on-children-has-82-success-rate-with-probiotics-10008864.html

Spoiler (click to show/hide)

23 Kids' peanut allergies were cured-- at least temporarily  <--- by far the most reserved of the headlines pulled up in the top 50 results 

OH.  THAT.



And so you respond, (having read the fine print-- the part which notes that one of the PLACEBO group also "outgrew" during the study period, conflating the results somewhat... and that there was no immunotherapy control group without probiotics, meaning that any claim of probiotic effect is, er-- speculative at best-- )


"Yes.  The study design and results are ratherr similar to oral immunotherapy trials which have been ongoing in the US for about 10yr.  Sadly it doesn't look all that earth shattering.  I think that the media locked onto it because of the popularity of the probiotic link."




"Bummer :("

Me again;  "Yeah.  The fine print usually doesn't match the promise of the headlines, unfortunately."

Friend---

"we can keep hoping"


What?  No timeline??  "Five more years??"   


:banghead:


I'm also left wondering if there is anyone that I know who isn't completely doolally with respect to the vast and varied assortment of sheer overwhelming WOO in the world these days.  For heaven's sakes, this is a person who is a scientist and should recognize the flaws in this study's design. 

One group:  placebo (sham desensitization)-- most had no improvement in tolerance, and one had remission

Other group:  Probiotics and oral immunotherapy with peanut flour-- 80% had improved tolerance.



Um.  80% is not any different from the US studies that didn't roll probiotics into treatment.  This is what we would call a conflating variable in the study design.  AT BEST, there is a marginal (and non-significant) impact on efficacy of treatment.  There is also at this point NO way of knowing whether probiotics cause such treatment to "hold" better than not providing them does (and the answer to the latter is "for some patients, treatment must be ongoing or it fails").

SO.

I just wasted 15 minutes of my day on this.   :disappointed:

Title: Re: Living with Food Allergies, 2013 and on
Post by: CMdeux on January 29, 2015, 02:14:44 PM
And WHY, after all these years, do I always have the profound sense of disenchantment with the person who does such a thing to me??  I'm disappointed-- and left wondering if they think that we live this way because we are choosing victimhood for our daughter or some such wackadoo thing??

 It makes me ANGRY.

I have to wonder if someone with a spinal cord injury gets subjected to every wacky tin-foil-hat nerve regeneration thing that comes over the AP wire.   :disappointed:

Guessing not.  guessing that it's that people with food allergies inconvenience others, and the truth is that it'd be so much BETTER for the people sending us such upbeat info if we would just.... you know... quit doing that. 

Not that I'm bitter or anything.    Well.  Yeah, I guess I am.


Title: Re: Living with Food Allergies, 2013 and on
Post by: notashrimpwimp on January 29, 2015, 03:32:33 PM
CM, that's exactly my reaction when these headlines come out and people feel entitled to ask whether I've considered curing myself or not.

Last time I tried the "eat what you're allergic to in small amounts to build tolerance" advice, I spent hours inside a bathroom and developed near ESP levels of shrimp detection.

I did ask about its legitimacy, mostly because my hinky meter went off.
Title: Re: Living with Food Allergies, 2013 and on
Post by: guess on January 29, 2015, 09:03:16 PM
Links, not to treat you like my personal search engine but if you run across the UK peanut OIT that was supposed to be breakthrough let me know.  I'm trying to find the study.
Title: Re: Living with Food Allergies, 2013 and on
Post by: LinksEtc on January 29, 2015, 09:20:23 PM
Links, not to treat you like my personal search engine but if you run across the UK peanut OIT that was supposed to be breakthrough let me know.  I'm trying to find the study.



I was just checking in before bed  :)  ....

is this the one?

peanut allergy cure in uk dr clarke.



Title: Re: Living with Food Allergies, 2013 and on
Post by: guess on January 29, 2015, 09:32:38 PM
You ninja, you.   :smooch:
Title: Re: Living with Food Allergies, 2013 and on
Post by: CMdeux on January 30, 2015, 12:14:59 AM
This seems to be the direct institutional press on the subject--

http://www.mcri.edu.au/news/2015/january/peanut-allergy/

and here's the abstract:

http://www.ncbi.nlm.nih.gov/pubmed/25592987


If anyone has institutional access, I'd love to actually see the study.  But as noted above, I have a pretty good idea on the basis of the few statements that made it into news stories from press releases.

NOT good experimental design, if I've come even close to correct about those features.


Quote
Further work is required to confirm sustained unresponsiveness after a longer period of secondary peanut elimination and to clarify the relative contributions of probiotics versus OIT.



Massive understatement. 
Title: Re: Living with Food Allergies, 2013 and on
Post by: SilverLining on January 30, 2015, 09:49:09 AM
CM, that's exactly my reaction when these headlines come out and people feel entitled to ask whether I've considered curing myself or not.

I got a weird visual from this. A cute little fairy princess, pulling out her wand (with ribbons trailing and glitter falling all around) and beating the person over the head repeatedly with that wand.
Title: Re: Living with Food Allergies, 2013 and on
Post by: Linden on January 30, 2015, 10:58:13 AM
I support those who are frustrated. I agree completely with what you are all saying. 
Title: Re: Living with Food Allergies, 2013 and on
Post by: CMdeux on January 30, 2015, 01:11:19 PM
Somehow, this all seems exasperatingly related to my week's worth of frustrations on multiple fronts--

antivaccination claptrap, Woo as a cure for food allergy, a complete misunderstanding of what food allergy IS in the first place, and a gross sense of futility about what I do for a living. 

{sigh}


http://www.pewinternet.org/2015/01/29/public-and-scientists-views-on-science-and-society/

 :disappointed:
Title: Re: Living with Food Allergies, 2013 and on
Post by: LinksEtc on January 30, 2015, 02:56:27 PM
.
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on January 30, 2015, 04:13:19 PM
It's nice to hear your psychologist tell you that the heightened anxieties you're facing surrounding your food allergies are a normal response, within normal parameters (not exaggerated).  And that complete sense of uselessness after being in a scary situation with your allergen is also normal because the adrenaline rush of fear can lead to ultimate exhaustion.  I'm not going crazy, I've just had a spectacularly crummy past six weeks from an allergy perspective.

Wow, I was just kind of floored when I walked out of my appointment yesterday.  In a good way.
Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on January 31, 2015, 08:03:20 AM
 ;)  Keep healing!
Title: Re: Living with Food Allergies, 2013 and on
Post by: SilverLining on January 31, 2015, 08:48:58 AM
Good to hear spacecanada.  :yes:
Title: Re: Living with Food Allergies, 2013 and on
Post by: guess on January 31, 2015, 10:51:33 AM
When I signed up for news alerts from a food allergy organization I don't remember asking for that to be abused by spamming me with mom blog "allergy free" recipes featuring cow's milk.  That's not news.
Title: Re: Living with Food Allergies, 2013 and on
Post by: LinksEtc on February 01, 2015, 04:11:51 PM
DD ate walnut with no problem yesterday.



 :happydance:
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on February 01, 2015, 07:28:24 PM
Fantastic news Links!!
Title: Re: Living with Food Allergies, 2013 and on
Post by: Macabre on February 01, 2015, 08:05:56 PM
Wow links!
Title: Re: Living with Food Allergies, 2013 and on
Post by: hezzier on February 01, 2015, 08:22:20 PM
I love that my sister gets it.  She always sets aside a small personal container of dips/chips, etc, for DS in case people's hands are not clean reaching into the community bowl.  Well, tonight it paid off, she had told her friends no nuts or sesame.  She confiscated a container of cashews from one of their friends.
Title: Re: Living with Food Allergies, 2013 and on
Post by: CMdeux on February 02, 2015, 12:39:22 AM
Oh, wow, Hezz-- that is one AWESOME family member.

  (Not the people with the cashews, obviously.  Them,  :dunce: :bonking: )


But your sister, she's a keeper.  Can you clone her?   :heart:
Title: Re: Living with Food Allergies, 2013 and on
Post by: guess on February 02, 2015, 01:24:03 AM
 :thumbsup: :thumbsup:

I'm tired so the emojis do the Yay! Walnuts and Yay! Sister gets it for me.
Title: Re: Living with Food Allergies, 2013 and on
Post by: GingerPye on February 02, 2015, 10:32:56 AM
hezz and links,  :thumbsup: :thumbsup: :thumbsup:
Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on February 02, 2015, 10:37:19 AM
Kudos times 2!
Title: Re: Living with Food Allergies, 2013 and on
Post by: LinksEtc on February 02, 2015, 10:47:53 AM
 :heart:


I wasn't really expecting it to be a problem.  It just feels good to confirm that the minor symptoms a while back weren't a new walnut allergy developing ... if anything, maybe OAS ... time will tell.
Title: Re: Living with Food Allergies, 2013 and on
Post by: LinksEtc on February 02, 2015, 08:31:59 PM
Being a FASer ...  thinking ... why not post this here?


"If you have the right kind of poop, you can sell it for $13,000 a year"
http://boingboing.net/2015/01/30/if-you-have-the-right-kind-of.html?utm_content=buffer127d7&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer
Title: Re: Living with Food Allergies, 2013 and on
Post by: MaryM on February 04, 2015, 06:55:17 AM
I am taking DD to Mt. Sinai today to talk to the therapist that specializes in families dealing with food allergies.  I am really hoping he can help lessen her anxiety.  If you met her, you would think she is totally fine but she tells me multiple times a day that she has XXXX symptom and looks for reassurance that she is ok.  She is also not really eating her lunch at school for fear that someone might cross contaminate it.  I witnessed her eating her safe food at a party recently and I almost cried as I watched her try to keep her food completely covered and safe from the other kids (who were not messy eaters).  Its going to be a long day of driving today.  If we make good time I plan to hit Fairway Market to pick up a few things.  Its a bit of a walk from the office but its not supposed to be bitter cold today.
Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on February 04, 2015, 07:04:54 AM
Good luck Mary!  Hope you get some good resources and that your DD likes the therapist.
Title: Re: Living with Food Allergies, 2013 and on
Post by: Macabre on February 04, 2015, 07:14:49 AM
MaryM I hope this is helpful.  Poor kiddo.  This has got to be really hard. 
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on February 04, 2015, 08:53:01 AM
Best wishes, Mary.  Therapy can be incredibly helpful.  I hope your daughter will see some benefit from it.
Title: Re: Living with Food Allergies, 2013 and on
Post by: GingerPye on February 04, 2015, 01:21:38 PM
I hope you come home today feeling like your DD is being helped .... some relief for you.   :grouphug:
Title: Re: Living with Food Allergies, 2013 and on
Post by: MaryM on February 04, 2015, 05:01:32 PM
It was a very good appointment.  He gave us some things to try and talked to DD about facing her fears head on.  I liked his style.  He told us privately that her reaction is very normal and he thinks with more time she will be much better.  Totally exhausted but am making a quick meal and the. We are off to our first Middle School Info night with DS.
Title: Re: Living with Food Allergies, 2013 and on
Post by: GoingNuts on February 04, 2015, 07:37:53 PM
Glad it went well Mary.  I hope she starts feeling more secure soon. :heart:
Title: Re: Living with Food Allergies, 2013 and on
Post by: Macabre on February 04, 2015, 07:49:00 PM
Mary I am glad  ive been thinking about y'all today. 
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on February 04, 2015, 10:15:38 PM
That is great news Mary! It may take some time for your DD to really understand and put into play what the therapist said. It may take another visit or two, but fingers crossed she will feel more comfortable soon, so you can feel more comfortable too. Hurray for healing. <3
Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on February 05, 2015, 07:50:53 AM
Mary, that's great news! 
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on February 07, 2015, 11:00:11 PM
Printed, laminated, and posted new allergy action plans at home and work yesterday.  More paper copies in my EpiPen and Allerject carriers.  Somehow, adding a photo of me taken with Tinker Bell (who is cropped out) makes it almost exciting to see on the fridge every few hours.  Hey, whatever helps. 

Also, my husband and I had a conversation about how we should start saying 'anaphylaxis' instead of 'allergies' since there are so many people with allergies or that people assume food allergies have similar symptoms to seasonal allergies and really aren't as serious as they are. 

Tomorrow: creating signs to put up at work to visibly declare my office a nut-free and peanut-free room.  I hoped it wouldn't to come to this, but my psychologist and I agreed that it would do more good than harm considering recent events.  Anyone have any good phrasing to put inside a stop sign?  I'm thinking 'ALLERGY ALERT: Please do not bring items containing tree nuts or peanuts into this room.'
Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on February 08, 2015, 06:28:53 AM
spacecanada, is there a reason anyone but you has to eat in this particular room.  Can it become a food free room?  If others share your office, is there a common eating area for others to eat in?

Then your stop sign becomes a "NO FOOD" sign.

Title: Re: Living with Food Allergies, 2013 and on
Post by: YouKnowWho on February 08, 2015, 08:48:04 AM
Not allergy alert - for the same reason you need to use the words anaphylaxsis vs allergy.

Anaphylaxsis Alert - No food allowed in this office.
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on February 08, 2015, 08:12:52 PM
Thanks, YKW, definitely using 'anaphylaxis' on the sign.  My coworker sometimes eats in the office (it's his office too) but lately he's been eating in the classroom instead.  I would like to make it so he cannot eat in the office, actually, since he sometimes has nutty things despite knowing about my allergy. 

I cannot safely eat anywhere else (unless I scrub the tables in the classroom), so making the office food free defeats the purpose to some extent.  And if I say 'food free' then I look like a hypocrite eating my own lunch in there, no?  Our doors are half-doors, and all the offices have windows, so it's not like I can close my door and eat where nobody can see me.
Title: Re: Living with Food Allergies, 2013 and on
Post by: hezzier on February 15, 2015, 12:38:34 PM
Drove 2 hrs to an away swim meet, we were supposed to be there 2 nights, but Sunday's events got cancelled due to the incoming blizzard.  The food bag was bigger than my bag with my clothing in it.  I had packed extra food in case we had to stay an extra night due to snow.
Title: Re: Living with Food Allergies, 2013 and on
Post by: ajasfolks2 on February 16, 2015, 01:20:51 PM
Spending free time wherever we can having kids do the cooking and/or actively watching/learning.

They are teens.  One off to college in 2 years.

Where did the time go?
Title: Re: Living with Food Allergies, 2013 and on
Post by: LinksEtc on February 16, 2015, 06:30:27 PM
Going through my twitter feed, seeing "Fifty Shades of Grey" stuff & thinking, of course, this reminds me of ...



http://foodallergybitch.blogspot.com/2012/07/50-shades-of-food-allergies.html



Title: Re: Living with Food Allergies, 2013 and on
Post by: Macabre on February 17, 2015, 09:38:28 PM
Twice this week I have seen bars that are deceptive.  One is called "No-Nut Bar." The website does day it's manufactured on shared equipment with nuts.  The other uses the term "Nut Free" but then says it's made in a shared facility with nuts.  Indeed--all the other bars have tree nuts in them. 

(http://verysmartbrothas.com/images/Do-not-think-it-means.jpeg)
Title: Re: Living with Food Allergies, 2013 and on
Post by: Janelle205 on February 18, 2015, 12:36:18 AM
I hate misleading labels.  I want to say that there should be a rule against stuff like that, but then I worry that the company would just not label for shared equip/facilities, since they don't have to.

And my relatives wonder why I won't just give them a list so that they can buy and make safe food.
Title: Re: Living with Food Allergies, 2013 and on
Post by: guess on February 18, 2015, 02:15:17 PM
hooboy... the number of ways we could rename this event

Blind-Tasting Bingo

Come test your mouth-mind connection![/size]OMSI is bringing Blind-Tasting Bingo back to Portland! A program started by Ecotrust and Edible Portland, this is a game of sensory deprivation and heightened exploration that was first unveiled at the 2012 Time-Based Art Festival. In the game, Executive Chef Ryan Morgan of Bon Appetit will present 12 distinct bites that players taste with their eyes covered, seeking to identify the items on a non-traditional bingo board that includes both correct and false options. A few lucky winners will take home 22oz bottles of Ninkasi beer! Prizes generously donated by Ninkasi Brewing Company.
[/color]
Title: Re: Living with Food Allergies, 2013 and on
Post by: Janelle205 on February 18, 2015, 02:58:50 PM
Well, you know, they do say that death can sneak up on you...
Title: Re: Living with Food Allergies, 2013 and on
Post by: SilverLining on February 19, 2015, 06:48:23 AM
Reminds me of one of the most popular experiments at The Science Centre when I was a kid, and also when my sons were kids.

You were given two candies that were coloured "wrong" and had to guess the flavour.

Eating a red candy blindfolded, you would guess it was lemon flavoured. But, when you see it is red, it is more difficult to place the flavour as lemon because your eyes and taste buds don't agree.

It was weird.
Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on February 20, 2015, 03:35:11 PM
Took the kids out to lunch today at an Ale House DD has not been to yet.  She is so done only getting a burger with no bun for lunch....so she and the waitress chatted and DD said if she could have anything, she'd like chicken quesadillas.

The waitress left and came back after speaking with the manager and chef.  They could not find ingredient labels for the tortillas and were not sure of their spices.  So they came up with a plan.  Using pizza dough spread thin with herbs, and then peppers, onions, cheese and chicken and flat, not folded over.  The chef used minimal spices and only straight spices, no blends.  DD loved her lunch!
Title: Re: Living with Food Allergies, 2013 and on
Post by: Macabre on February 20, 2015, 05:17:39 PM
Oh, that is great!!!  I love it when they can do stuff like this.  It does get so, so old not being able to have bread at a restaurant.  I'm glad your dd had a great lunch!
Title: Re: Living with Food Allergies, 2013 and on
Post by: GingerPye on February 20, 2015, 05:31:34 PM
PC, that is very wonderful!!  Worth a big tip!
Title: Re: Living with Food Allergies, 2013 and on
Post by: Macabre on February 20, 2015, 05:31:42 PM
At DS' speech tournament next weekend, he'll have an overnight with no good food options at the tournament itself.  He could make his own, but they have to suit up, pack, eat breakfast and get out the door by 7:00 am.  I was at this tournament last year, and they served PB sandwiches on rainbow multi-colored bread.  ICK.

So I ordered him a couple of Go Picnic things from amazon--better than driving Target to Target to look for them.  I've not seen teh Sunbutter one in stores in a while:

(http://ecx.images-amazon.com/images/I/91W4lp3UZeL._SY679_.jpg)

He's had this one before.  It has Enjoy Life Mambo Munch in it: 
Ingredients
Sunbutter® Creamy Sunflower Seed Spread: Sunflower Seed, Evaporated Cane Syrup, Palm Oil to prevent separation, Salt, and Natural Mixed Tocopherols to preserve freshness.
Enjoy Life® Mountain Mambo® Seed & Fruit Trail Mix: Raw Sunflower Kernels, Roasted Hulled Pumpkin Seeds (Pumpkin Seeds, Sunflower Oil [Sunflower Oil, Citric Acid], Salt), Raisins*, Dried Apples*, Chocolate Chips (Evaporated Cane Juice, Natural Chocolate Liquor (Non-Alcoholic), Non-Dairy Cocoa Butter), Cranberries* (*Sulfite-Free).
Sweet Perry Orchards™ Tropical 100% Fruit Peel-A-Part™: Concentrated Apple Puree and Juice (Contains Ascorbic Acid), Concentrated Mango Juice, Concentrated Pineapple Juice, Natural Flavor, Natural Color, Gelling Agent (Pectin).
Crunchmaster® Multi-Grain Crackers: Brown Rice Flour, Whole Grain Yellow Corn, Potato Starch, Safflower Oil, Oat Fiber, Evaporated Cane Juice, Sesame Seeds, Flax Seeds, Millet, Sea Salt, Quinoa Seeds.
Enjoy Life® Double Chocolate Crunchy Cookie: Flour Mix (White Rice Flour, Buckwheat Flour, Millet Flour), Chocolate Chips (Evaporated Cane Juice, Chocolate Liquor, Non-Dairy Cocoa Butter), Palm Oil, Brown Pure Cane Sugar, Organic Evaporated Cane Juice, Light Buckwheat Flour, Natural Process Cocoa Powder, Natural Flavors, Vanilla, Salt, Sodium Acid Pyrophosphate, Baking Soda, Xanthan Gum, Rosemary Extract.

And I ordered a six pack of these.  He's not had them yet.  And then what do I think to look for?? CUMIN  But wait--there's more! Chips are same facility as.  Lovely.  His allergist said he can now eat same facility as, but I'm not going to risk it away from home and at a tournament. 
(http://www.gopicnic.com/SNK_BlackBeanDip_400px.jpg)

INGREDIENTS:
black beans, water, tomato paste, anaheim chili peppers, extra virgin olive oil, cane sugar, onion flakes, roasted garlic, citric acid, sea salt, lime juice concentrate, cumin, cayenne pepper.

ALLERGEN INFORMATION:
none.

Confetti Tortilla Chips


INGREDIENTS:
organic blue, white, and yellow corn flour, organic sunflower oil, sea salt, trace of lime.

ALLERGEN INFORMATION:
packaged in a facility that also processes peanuts & tree nuts.
Title: Re: Living with Food Allergies, 2013 and on
Post by: SilverLining on February 24, 2015, 09:01:03 AM
I am ready to just through in the towel and allergies be damned.

I contacted a few spice companies, including McCormick and have yet to find anything that doesn't have sesame seed on site. They follow safe cleaning, they follow legal requirements.  But IMO, they are all a risk to me.
Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on February 24, 2015, 09:37:43 AM
SL, DD is class 6 for sesame.  Too high to count.

I have not found any spice supplier that is sesame free.  I use to try to grind spices with one of those grater sticks and a coffee grinder................no more, way too much work.

We use McCormick.  Any time I call they are great answering my questions.  With garlic on her list too, but garlic powder being safe, I call them often.

I avoid their blends.  I do use their grill-mates with caution.  I figure that is where they might "add" sesame seeds or dehydrated garlic. 

DD has done fine with their products.
Title: Re: Living with Food Allergies, 2013 and on
Post by: SilverLining on February 24, 2015, 12:16:11 PM
PC, thank you.  As you may have guessed, I'm really feeling at the end of my rope right now. I think it started with the cumin recall....and suddenly....I felt the need to verify spice safety. And there's none.

mccCormick is what we usually buy.
Title: Re: Living with Food Allergies, 2013 and on
Post by: ajasfolks2 on February 24, 2015, 12:21:41 PM
*sigh* so tired of the swinging pendulum:

So, now, it's again all the mom's fault for not feeding peanut to baby kiddo.

Right.   ~) ~) ~)

I didn't feed my baby peanut directly.  I f***ing poisoned him with the peanut protein in breastmilk.
Too bad I didn't think to videotape those hours-upon-hours of miserable baby and exhausted mom.
Too bad I didn't use my cell phone to photograph the eczema ad nauseum and post it to Facebook.

oh, right.

Didn't have any of that then.


~ ~ ~

ETA:  Link to our discussion here at FAS as to this latest "news":
New Research Shows Peanut Allergy May Be Prevented Early in Life
Title: Re: Living with Food Allergies, 2013 and on
Post by: GingerPye on February 24, 2015, 12:55:35 PM
ajas, I could have written that post. 

 :-/

 :grouphug:
Title: Re: Living with Food Allergies, 2013 and on
Post by: devnull on February 24, 2015, 01:23:55 PM
Sad that it has become this predictable.
Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on February 24, 2015, 05:44:31 PM
ajas, I could have written that post. 

 :-/

 :grouphug:


Ditto!  Not to mention the cases of planters roasted peanut packets in my desk at work.  Only peanuts and celery settled my stomach when I was preggo!
Title: Re: Living with Food Allergies, 2013 and on
Post by: GoingNuts on February 24, 2015, 07:55:02 PM
Ajas, I am soooo with you.   :grouphug:
Title: Re: Living with Food Allergies, 2013 and on
Post by: Janelle205 on February 24, 2015, 10:49:06 PM
Ditto!  Not to mention the cases of planters roasted peanut packets in my desk at work.  Only peanuts and celery settled my stomach when I was preggo!

PB is currently saving my rear right now.  I'm guessing a combination of meds and sickness, but I haven't been able to eat more than one small meal a day for about the past week and a half.  I've added a spoonful of PB a couple of times a day to get some protein in when I really can't force anything down.

Third trimester on Friday, and I'm still losing weight.
Title: Re: Living with Food Allergies, 2013 and on
Post by: LinksEtc on February 25, 2015, 05:16:16 PM
I hope you feel better soon Janelle ... btw, congrats on your pregnancy  :heart: !


--------


Dd told me today that she used to think her MedicAlert bracelet said "Cherry EpiPen" instead of "Carries EpiPen"  :) ... she knew the Epi did not go in the mouth, but she thought cherry-flavored liquid was injected.

&

She is now giving me advice on how to deal with her medical stuff.  She told me I should have a journal divided into 3 sections ... one to keep track of FA mouth itching (none lately), one for nosebleeds (quite a few lately), & one for reflux symptoms (which, yes, the GI told us we should pay attention to).  She said a "good mom" would take her advice & that I wasn't being "good".     :coffee:
(I'm thinking the apple doesn't fall far from the tree  :P )



Title: Re: Living with Food Allergies, 2013 and on
Post by: guess on February 25, 2015, 05:41:23 PM
Your Padawan learner?  It's been a long day and the thrills are coming cheap.  Star Wars references are happening.
Title: Re: Living with Food Allergies, 2013 and on
Post by: LinksEtc on February 25, 2015, 05:51:51 PM
Your Padawan learner?  It's been a long day and the thrills are coming cheap.  Star Wars references are happening.


 ;D


I'm afraid so.
Title: Re: Living with Food Allergies, 2013 and on
Post by: LinksEtc on February 27, 2015, 07:44:03 AM
As usual, I don't want to go into many details, but I think my FA experiences are helping me to be a better caregiver for my mom.


We were doing some normal stuff & she didn't seem right to me.  Although anxiety is not a big issue for her, she thought maybe her symptoms were due to anxiety.  The more time I spent with her, the more I felt that this was not correct.

I asked for her to call a doc & she.did.not.want.to.  Not at all.  Adamant & starting to get mad at me.

I, in turn, started to feel frustrated & angry ... I hear CM's "voice" ... I find it unhelpful to get angry.


Then I remembered how the Serene&Wise1 s/w my dh about FA ... "Well, I can't force you to follow my advice, but ... "

so I applied my FA-Jedi skills ... calmly ...

"Well, I can't force you to call the doc, but ... "



She saw a doc who sent her to the hospital ... it was very important that she went to the hospital.



TY to CM & Dr-FA-Yoda.


 :heart:



Title: Re: Living with Food Allergies, 2013 and on
Post by: GingerPye on February 28, 2015, 08:43:06 AM
oh my .... hope she is okay now. 
Title: Re: Living with Food Allergies, 2013 and on
Post by: LinksEtc on February 28, 2015, 09:29:49 AM
oh my .... hope she is okay now.


She only had to stay 1 night ... home now doing better.


 :heart:

Title: Re: Living with Food Allergies, 2013 and on
Post by: guess on February 28, 2015, 09:30:39 AM
That moment you realize that nearly all of the allergen specific subforums apply to you.  :-[

One day I hope we shed some of these suckers.
Title: Re: Living with Food Allergies, 2013 and on
Post by: ajasfolks2 on March 01, 2015, 12:14:00 PM
oh , guess, just  :grouphug:
Title: Re: Living with Food Allergies, 2013 and on
Post by: YouKnowWho on March 02, 2015, 12:32:33 PM
Thinking I would treat two of the kids to a Krispy Kreme today and make donuts for the other.  Then I saw a friend excitedly sharing a new KK donut - the Reese's Peanut Butter Cup donut filled with peanut butter and topped with hazelnuts.  Joy - I can kill two kids with one donut. 

I will deal though - it's really just one food and it's not like they have that limited a diet.  Tomorrow I will make donuts for all.
Title: Re: Living with Food Allergies, 2013 and on
Post by: Macabre on March 02, 2015, 12:47:07 PM
Crap.
Title: Re: Living with Food Allergies, 2013 and on
Post by: starlight on March 02, 2015, 12:51:28 PM
I think the Reese's donut is only in the UK....

http://grocerygems.blogspot.com/2015/02/review-krispy-kreme-reeses-peanut.html
Title: Re: Living with Food Allergies, 2013 and on
Post by: Macabre on March 02, 2015, 12:53:59 PM
Yes--just called them. Only in UK/International.
Title: Re: Living with Food Allergies, 2013 and on
Post by: Macabre on March 02, 2015, 12:55:01 PM
The rep said that their US locations are nut free.
Title: Re: Living with Food Allergies, 2013 and on
Post by: YouKnowWho on March 02, 2015, 01:07:59 PM
THANK YOU!  Edited my picture and retagged all. 
Title: Re: Living with Food Allergies, 2013 and on
Post by: SilverLining on March 03, 2015, 06:50:54 PM
YouKnowWho, you may have accidentally saved my life.

Because of your post about KK, I looked into the Canadian location. They now have bagels. I can't get any information from the web-site, but bagels tend to have sesame seeds. Which would make everything in there poison to me.
Title: Re: Living with Food Allergies, 2013 and on
Post by: YouKnowWho on March 04, 2015, 08:07:53 PM
YouKnowWho, you may have accidentally saved my life.

Because of your post about KK, I looked into the Canadian location. They now have bagels. I can't get any information from the web-site, but bagels tend to have sesame seeds. Which would make everything in there poison to me.

You know it's a reminder to me as well - I need to call on products that we use often because they will not always continue to be safe.  (Though others made that call for me but they are folks that I trust to lend a hand who understand what my comfort level is whereas others, not here think it is overkill).
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on March 09, 2015, 10:18:05 AM
How many firefighters and paramedics can fit into my really small living room, you ask? We did a little experiment yesterday and the answer is SEVEN.

Worst part is that we have no idea what caused the reaction.  :(
Title: Re: Living with Food Allergies, 2013 and on
Post by: GingerPye on March 09, 2015, 10:27:03 AM
oh NO.   :grouphug:  What happened?
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on March 09, 2015, 10:39:23 AM
oh NO.   :grouphug:  What happened?
Dunno, really.  Ate lunch and my throat and tongue felt funny.  I ignored it because we didn't have anything new.  Ate a bit more of the same thing for snack and nausea, throat swelling and tongue tingling got worse. Epi.  Boo.   ER doc wasn't convinced it was allergies because of no rash or face swelling. He asked about what the allergist told me when I saw him ages ago (the quack who said adults don't develop food allergies and I won't need EpiPens). Paramedics were more convinced.  Sigh. Off to the GP and get a referral to a new allergist I guess. ???

Possible suspects: new bag of Skittles given to me as a gift (called company and they should be safe), new bag of SunMaid raisins, or plain mashed potatoes which we never have. 
Title: Re: Living with Food Allergies, 2013 and on
Post by: GingerPye on March 09, 2015, 10:40:23 AM
wow.  Histamine reaction to the raisins??  No idea.  I'm so sorry.
Title: Re: Living with Food Allergies, 2013 and on
Post by: SilverLining on March 09, 2015, 10:48:57 AM
What are your allergies?

My sister had to be careful what raisins she bought because of being allergic to soy.
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on March 09, 2015, 10:57:06 AM
What are your allergies?
Tree nuts and peanuts, with intolerance to dairy and an unknown intolerance we are trying to figure out - possibly potatoes or tomatoes (thus the mashed potatoes today... So maybe it is a new allergy?). Anyway, leg hurts today, headache but otherwise fine. 

FYI Allerject worked great. Paramedics and ER staff were all intrigued by it as they had never seen them used before. They beep at you constantly after they have been used until you put it back into its case.  When you take it out again it tells you it has been used and to return it to medical staff for disposal.
Title: Re: Living with Food Allergies, 2013 and on
Post by: starlight on March 09, 2015, 10:59:44 AM

Tree nuts and peanuts, with intolerance to dairy and an unknown intolerance we are trying to figure out - possibly potatoes.

If one of the things you ate was mashed potatoes, maybe your possible intolerance is now a definite allergy?  :-/
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on March 09, 2015, 11:02:27 AM
That is my guess too, unfortunately, or contaminated Skittles or raisins.
Title: Re: Living with Food Allergies, 2013 and on
Post by: rebekahc on March 09, 2015, 12:25:59 PM
So sorry you had a reaction!   :grouphug:

It seems I remember a long time ago reading that raisins are possibly nut contaminated because the baskets/barrels/whatever (can't remember the vessel for sure) they were stored/transported in were often used for nuts also with no washing between?

ETA:  Here's a link to a long-ago discussion about Sunmaid specifically - not sure if things have changed since then.
http://www.peanutallergy.com/boards/sunmaid-raisins

ETAA:  Here's a link to a less long-ago discussion that sounds promising.
http://allergy.hyperboards.com/index.php?action=view_topic&topic_id=12586

I still haven't been able to find that discussion about the raisins being dried/stored/transported before packaging, though.
Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on March 09, 2015, 12:47:23 PM
So sorry about the reaction and now I get the comment in another forum about potatoes.

Glad you are well and can find a bit of humor in an otherwise stressful scary moment.  (DD's last reaction was a couple Januaries ago and it was so cold that the extra fire and police personnel came inside too.  Too many large men plus the stretcher and equipment were overwhelming in our kitchen!)

What was in the mashed potatoes?  Could the culprit be an added ingredient.

Hope you are feeling better.
Title: Re: Living with Food Allergies, 2013 and on
Post by: Macabre on March 09, 2015, 02:01:20 PM
I would suspect the outside of the skittles bag or raisin box more than anything else.

I'm sorry!
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on March 09, 2015, 03:12:48 PM
I would suspect the outside of the skittles bag or raisin box more than anything else.
That is what the paramedics thought.  They had me wash my hands and face too, in case I still had residue on them.   Thumbs up to our paramedics yesterday. 

Frustrating when there is no obvious cause.  I feel like scrubbing the whole house clean.  The whole house... Every last plate, fork, book, and puzzle piece, yk?
Title: Re: Living with Food Allergies, 2013 and on
Post by: becca on March 10, 2015, 12:55:18 PM
:(.  Sorry you had a reaction, Space.  How are you doing emotionally today?  I know you have worked hard to overcome anxiety after your last reaction.  Hugs.
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on March 10, 2015, 01:08:25 PM
:(.  Sorry you had a reaction, Space.  How are you doing emotionally today?  I know you have worked hard to overcome anxiety after your last reaction.  Hugs.
I am at home alone for the first time after the reaction and scared, frustrated, and a bit depressed.  My husband is texting me to check on me every hour or so and reminding me to do fun things to stay positive. He made me a safe lunch to make sure I would eat today.  I am taking it day by day and know I can call my psychologist any time if things don't improve. I think I need to let myself be upset for a few days - that is normal.  Thanks for checking in and for everyone's support.   :heart:
Title: Re: Living with Food Allergies, 2013 and on
Post by: Macabre on March 10, 2015, 01:09:37 PM
Time to binge watch something!

Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on March 10, 2015, 01:13:04 PM
Time to binge watch something!
So far the line up includes Dolphin Tale, Dolphin Tale 2, Soul Surfer, A Smile As Big As The Moon, Despicable Me, and Wall-E. All happy feel good family movies. 
Title: Re: Living with Food Allergies, 2013 and on
Post by: MaryM on March 10, 2015, 01:41:02 PM
Just came to let spacecanada know I'm thinking of her.  I hope you enjoy all of those movies!
Title: Re: Living with Food Allergies, 2013 and on
Post by: hezzier on March 12, 2015, 06:31:27 AM
DS's school is collecting PB for the End 68 hours of Hunger Program.  We sent Sunbutter.
Title: Re: Living with Food Allergies, 2013 and on
Post by: ninjaroll on March 13, 2015, 09:29:15 PM
A fit of giggles came on when I pondered a group of us going to the next FARE conference. 
Title: Re: Living with Food Allergies, 2013 and on
Post by: GoingNuts on March 14, 2015, 11:45:56 AM
A fit of giggles came on when I pondered a group of us going to the next FARE conference.
:rofl: :rofl: :rofl:
Title: Re: Living with Food Allergies, 2013 and on
Post by: YouKnowWho on March 15, 2015, 06:27:22 PM
This is more of a living with environmental allergies...

Pollen is creeping up and I have been tracking.  Mainly been trying to figure out what DH is allergic to because he is always miserable at the start of the season.  Our local board lists trees out individual (weeds and grasses as well).  But I have been stumped by the Unident tree.  What in the heck is a Unident tree.  Okay, let's Google it...

And then there is the moment when you slap your forehead, wish you had a V-8 when you realize the Unident tree you are searching for is actually short for unidentified species.

Dork.
Title: Re: Living with Food Allergies, 2013 and on
Post by: ninjaroll on March 15, 2015, 07:25:08 PM
Why can't you live closer to me.  We could torment each other at the gym together. 
Title: Re: Living with Food Allergies, 2013 and on
Post by: YouKnowWho on March 15, 2015, 08:28:36 PM
You would at least understand why I was over the moon happy to find a local restaurant using Pure Knead bread (free of the top 8 and super yummy) so that DS1 could have his first ever, in a restaurant, served on a bun (since most GF buns have egg) burger.  My friend was elated to share the news with me.

Only to find out apparently people like burgers with fried eggs on them.  WTH?  And oh yeah, on the same grill as the burger. 

But they could clean it for me.  But I just read the article about pancakes. 

Ugh.  Friend doesn't understand. 
Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on March 16, 2015, 07:40:50 AM
This is more of a living with environmental allergies...

Pollen is creeping up and I have been tracking.  Mainly been trying to figure out what DH is allergic to because he is always miserable at the start of the season.  Our local board lists trees out individual (weeds and grasses as well).  But I have been stumped by the Unident tree.  What in the heck is a Unident tree.  Okay, let's Google it...

And then there is the moment when you slap your forehead, wish you had a V-8 when you realize the Unident tree you are searching for is actually short for unidentified species.

Dork.


Because of a few posts here, I got up yesterday and told my Mom I have to start watching DD.  We are still snow covered, but when the grass and bushes are all uncovered, pollen will be quick to show it's face and we will be behind.  Some years without snow cover, the pollen starts in February.

Then DD came downstairs...............her face swollen, her eyes purple and swollen, her nose running...............................it turns out I'm late anyway.  Allergra D and Pataday (which I bought when you all started posting about pollen) and a short nap and she was feeling so much better.  This morning she asked if she should take it again because we still have lots of snow.....I asked her how she was feeling and she said, my face feels puffy...................ummmm, yes.  Then she wanted to know how there could be pollen when it is 20 degrees and snow covered and I said the birds brought it from the south!  I don't know!  Perhaps I should have blamed the Unident Tree!  (I've never heard of that one!)

And this morning, when I logged into my computer, I got my first pollen allergy alert.  Juniper, Cedar and something else. 
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on March 16, 2015, 08:08:14 AM
Ugh, same situation in our house with environmentals too. I normally start dosing my husband with Reactine and Pataday at the end of March but he is already not sleeping, scratching at his eyes, and complaining about it. Pollen season is upon us...

Is it twisted that I think environmental allergies are worse than food allergies? At least you can avoid food allergens with due diligence. (Most of the time.). That, or I am just used to living with them and feel horribly sad to see my husband suffer all spring and summer, even with meds.  (He won't see an allergist because our one and only experience with an allergist was so horrible. I don't blame him.)
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on March 17, 2015, 08:55:36 PM
Seeing peanut shells on the ground during our walk this evening turned my otherwise uneventful day into a meltdown. I feel like a three year old right now, having a meltdown for something randomly insignificant.

I am just writing it off as part of my mental recovery period.  :-[
Title: Re: Living with Food Allergies, 2013 and on
Post by: SilverLining on March 17, 2015, 09:05:16 PM
 :grouphug:
Title: Re: Living with Food Allergies, 2013 and on
Post by: ajasfolks2 on March 18, 2015, 08:43:41 AM
Need some distance between me and another (LTFA) mom who is waaaaaay less careful than we are and who treats most reax with Benadryl first . . . for a child ana to egg, soy, pnut, nut and who has asthma.  Asked who their allergist is as I think I want to avoid that MD. 

Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on March 18, 2015, 01:08:01 PM
I went to the mall today.  I went to William Sonoma to pick up some cooking tools.  (love their new spatulas).  Anyway....I was looking at wooden spoons, some were whitish and some were dark brown.  The white spoons were maple which got me wondering so I picked up a dark brown spoon.  It is made of Walnut.    :dunce:  What would happen if I cooked for DD with a walnut wooden spoon?  Would she have any kind of a reaction?  I know, it's not the nut or the shell, but where do those parts get their protein from?

As I was walking out I thought, you mean now I have to ask people what their wooden spoons are made of????????
Title: Re: Living with Food Allergies, 2013 and on
Post by: YouKnowWho on March 18, 2015, 04:04:49 PM
Or what they are seasoned with...

And then there is the whole yeah, I get your teflon is fab but you cannot cook for DS1 with it EVER.
Title: Re: Living with Food Allergies, 2013 and on
Post by: YouKnowWho on March 18, 2015, 08:16:57 PM
Gorgeous day but I can't open the windows.

Pollen count went from under 200 yesterday to almost 1800 today  :misspeak:
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on March 18, 2015, 09:57:41 PM
Anything wood, cast iron, Teflon, or unsealed ceramic = danger zone!  (Unless it's in your own house and only touches safe food, of course.)  I don't trust anyone's cutting boards either - too many little cuts to collect particles of whatever.  (I buy dollar store ones and bring them wen I go to someone's house where otherwise safe food will be made.)

I would avoid walnut wood products, for sure.  Many of them are sealed with walnut oil too.  Just the word walnut sends chills up my spine even though I know the wood is supposed to be ok.  Yeah, walnut hardwood floors or furniture, pass.  Actually, just about anything wood for the kitchen is a pass, except my solid hardwood cutting board only because I met the guy who made it and he told me exactly what woods and sealant products he used.

Wow, writing that was a reality check at just how restricted/distorted some parts of our lives get, huh.   :-/
Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on March 19, 2015, 11:53:13 AM
Sometimes I think we live in the Twilight Zone!
Title: Re: Living with Food Allergies, 2013 and on
Post by: SilverLining on March 21, 2015, 09:30:44 AM
I should not be this happy just because for an entire week I was able to wash my hair and not spend the day scratching the skin off. That should just be normal.

But my shampoo was discontinued. The one I used to use says "new and improved" and looking in to their "improvement" it involves protein.  My e-mail with questions was ignored.

It only took three attempts to find a shampoo that I can live with.
Title: Re: Living with Food Allergies, 2013 and on
Post by: Macabre on March 22, 2015, 07:38:32 AM
Oooh. No bueno.
Title: Re: Living with Food Allergies, 2013 and on
Post by: YouKnowWho on March 22, 2015, 02:28:21 PM
I am going to blame pollen...but hives all down my back after washing my hair.  Or I caught SL's issue.
Title: Re: Living with Food Allergies, 2013 and on
Post by: SilverLining on March 22, 2015, 05:18:29 PM
Sorry to hear about the hives.

My issue was with the scalp though. I was seriously considering shaving it all off. 
Title: Re: Living with Food Allergies, 2013 and on
Post by: YouKnowWho on March 22, 2015, 09:31:16 PM
The scalp issue arises with the majority of the shampoos on the grocery/drug store shelves.  It got really bad after Em was born (I basically went a month without regular showers  :misspeak: - not new mom not showering, more like going weeks at a time between the pneumonia and brain surgery). 

Scratching and umm, the most disgusting flakes ever.  Shampoo should fix that right?  No, that added to the burn, itch and flakes (not dandruff flakes - I was losing 1/4-1/2cm sections of scalp like psorasis flakes). 

This reaction is hives though which I think are because pollen is going insane/allergy cup full.
Title: Re: Living with Food Allergies, 2013 and on
Post by: SilverLining on March 22, 2015, 09:46:12 PM
Washing with shampoo does not always help with flakes. Sometimes it makes it worse, and nothing to do with allergies.

I'm not aware of pollen being an issue here, but we are wondering about snow mold. That could be causing DH a lot of problems right now.
Title: Re: Living with Food Allergies, 2013 and on
Post by: GoingNuts on March 22, 2015, 09:55:39 PM
The mold has definitely been a problem for me. Yesterday we had lots of melting, and I had a really raw throat, bad headache and burning eyes. I was sure I was getting sick, but then later in the evening when the temperature dropped I was fine.  Im sure it was the mold.
Title: Re: Living with Food Allergies, 2013 and on
Post by: hezzier on March 24, 2015, 06:35:45 PM
Today was the last swim practice of the fall/winter season so was a fun practice with a slice of pizza to finish it off.  Of course, I was caught off guard, but a quick call to the pizza place confirmed that it was safe for DS.  I let one of his coaches know that he could have a piece.  However, I did not tell DD that it was safe so she started freaking out when she saw DS with a piece of pizza from a place she's never heard of.  Love that she was looking out for her brother!
Title: Re: Living with Food Allergies, 2013 and on
Post by: SilverLining on March 25, 2015, 07:20:34 AM
That is good to know she watches out for him. :)
Title: Re: Living with Food Allergies, 2013 and on
Post by: ajasfolks2 on March 25, 2015, 12:51:42 PM
So frustrated to see the same rehashed converstations on Facebook about LTFA and schools and no 504 and Epipens locked up and schools demanding that parents sign release for all med records and the same sh** new day.

How many years have we been discussing these same isues?

Can feel the bile rising.

 :banghead:
Title: Re: Living with Food Allergies, 2013 and on
Post by: ninjaroll on March 28, 2015, 04:45:17 PM
Yeah those Peanot Butter cups are a little too real looking.  It's freaking me out to watch it being eaten.
Title: Re: Living with Food Allergies, 2013 and on
Post by: LinksEtc on April 01, 2015, 08:16:21 PM
Was thinking that most of dd's allergy stuff was pretty stable at this point ... was trying to back off from this allergy stuff & then like a bad joke tonight ...

dd gets hives on her face after I let her try "Cinnamon Apple Spice" tea ...

I took a pic for Dr-FA-Yoda & I'll bring the box to the appt.  What do you want to bet it's going to be another non-top8 ....

some of the ingredients:
Hibiscus
Chamomile
Chicory
Carob
&, of course, "natural flavors"


 :pout:


Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on April 01, 2015, 08:32:41 PM
I have found teas to be really bad for cross contamination, actually.  Why did they have to start making hazelnut and almond teas? I saw one with peanut or pecan too.  Ugh!

At the store today and saw what looked like spilt milk on the conveyor.  Had a little freak out then realized I am not actually allergic to milk - duh! (I avoid it because of severe intolerance.) I only had two non-food things and didn't use the conveyor anyway.
Title: Re: Living with Food Allergies, 2013 and on
Post by: SilverLining on April 01, 2015, 08:44:51 PM
All the flavoured coffee that I have checked only used artificial nuts. Real ones don't add enough flavour.
Title: Re: Living with Food Allergies, 2013 and on
Post by: LinksEtc on April 01, 2015, 08:53:45 PM
Doesn't McC have a sesame, chamomile, shrimp allergy combo?

Dd has had a few questionable possible shrimp symptoms.

Hmmmm ... coincidence?

I know the drill ... keep an eye on the suspect ingredients ... avoid until appt.






Title: Re: Living with Food Allergies, 2013 and on
Post by: Macabre on April 01, 2015, 09:35:50 PM
Yes she does!

So with chamomile, here's the syllogism:

All chamomile allergic people are also allergic to ragweed, but not all ragweed allergic people are allergic to chamomile.


I don't know that there is a sesame/shrimp/chamomile trifecta.  But if she has a ragweed allergy, chamomile does look a bit suspicious in that lineup.
Title: Re: Living with Food Allergies, 2013 and on
Post by: LinksEtc on April 01, 2015, 09:47:21 PM
Her RAST for ragweed for 2014 was only .15 

Hmmm ...

As always, time will tell.


YK, speaking of jokes ... being 4/1 and all ... & dd has been planning all day how to "get me" ...
I actually asked her if she put marker or makeup on her face!  No.such.luck.
Title: Re: Living with Food Allergies, 2013 and on
Post by: rebekahc on April 01, 2015, 10:40:18 PM
DD is allergic to chicory. We found out when she ate a Fiber One bar - it was the only ingredient she doesn't usually have.

ETA Sounds like chicory and chamomile could be a double-whammy.

Quote
People who are allergic to daises, ragweed, chrysanthemums and marigolds may be at risk of developing a severe allergic reaction to chicory root extract. Handling or consuming chicory root extract may result in hives, intense itching, shortness of breath, difficulty swallowing, facial swelling, wheezing, dizziness, pale skin or loss of consciousness. If you exhibit any of these side effects, seek emergency medical care. In the absence of prompt medical intervention, an allergic reaction to chicory root extract may be life-threatening.
Title: Re: Living with Food Allergies, 2013 and on
Post by: LinksEtc on April 02, 2015, 06:35:36 AM
.
Title: Re: Living with Food Allergies, 2013 and on
Post by: Macabre on April 02, 2015, 12:48:32 PM
Interesting RC.  I will say that I have an aversion to chicory.  It has made my mouth feel like it's burning.  Also makes my tum feel funny.  But I hadn't associated those things with allergy (and it may not be--just may be what chicory does to me like cinnamon). 
Title: Re: Living with Food Allergies, 2013 and on
Post by: SilverLining on April 11, 2015, 09:54:43 PM
I know....I'm on the express train to hell.

But when I saw the title of this news article


Hepatitis A warning for Toronto organic juice bar


The first thing that popped into my head was "It's OK. It's organic."

(You know? Like organic pb is safe?)
Title: Re: Living with Food Allergies, 2013 and on
Post by: Janelle205 on April 15, 2015, 09:30:36 AM
So...my tongue has started to get numb when eating at times.  Haven't been able to connect it to certain foods yet.  Everything that I have been eating has been things that should be super safe, allergy wise.

No itching, no swelling, no hives or redness, no difficulty breathing.

Seeing the doc this morning.

Edit: I have to start a food diary.  Crap, crap, crap.  Crappity crap crap.
Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on April 15, 2015, 02:23:27 PM
That does not sound pleasant.  Nerve?  What did your doc think?
Title: Re: Living with Food Allergies, 2013 and on
Post by: Janelle205 on April 15, 2015, 02:57:19 PM
He wasn't sure, but gave me some ways to tell if it is a nerve issue. Supposed to start keeping a list of things that I have eaten an hour before it happens.  He wants me to get myself to a hospital if I have any other allergy symptoms with it, or Epi and ambulance for anything severe.
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on April 15, 2015, 04:40:56 PM
Take care, Janelle.
Title: Re: Living with Food Allergies, 2013 and on
Post by: Macabre on April 27, 2015, 11:31:49 AM
I picked up 80 (EIGHTY) empty peanut shells from our backyard.  I had to do this, or DS would not be able to mow.  We often find peanut shells when we garden (and I throw those gloves away if I have to touch the shell)  Egads--but the squirrels are piling them up here.  Highly skilled squirrels.  Some neighbor has a feeder with them.  Ugh. 

It's trash day today, and it occurred to me that this is my opportunity to put these in a neighbor's trash can and not ours.  So I used a disposable glove and put the shells in a plastic bag, tied it up and put it in our neighbor's trash can before the truck came by. 

(http://i20.photobucket.com/albums/b205/McCobbre/Mobile%20Uploads/454E808B-B074-4E7A-85B8-B5DFF8A20000_zps7yvi2amf.jpg)

(http://i20.photobucket.com/albums/b205/McCobbre/Mobile%20Uploads/370AB08F-7AC7-4930-9A0F-3B1F68CF430E_zpsuwevpnn6.jpg)

Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on April 27, 2015, 12:14:08 PM
I can so relate!  I have only found a half dozen shells so far this year.  I am hoping my neighbor changed their feeder food!
Title: Re: Living with Food Allergies, 2013 and on
Post by: ninjaroll on April 27, 2015, 02:10:35 PM
Feeding birds I understand.  Tree rats - no.
Title: Re: Living with Food Allergies, 2013 and on
Post by: ajasfolks2 on April 27, 2015, 04:41:16 PM
Mac -- possible soluton is to go get a big bottle of TX Pete Hot Sauce and mix a strong solution (with water) in dedicated spray bottle.  Spray that area where the squirrels have been leaving the pnut shells . . . will have to reapply after rain and after mowing . . . may help get them to move on to somewhere else.

Next time you are at a Walmart or other CVS / Walgreens, get a box of disposable vinyl (not latex) gloves and tuck in your pantry.  You'll be so glad you have these for all kinds of surprises.

Title: Re: Living with Food Allergies, 2013 and on
Post by: Macabre on April 27, 2015, 05:26:31 PM
Oh I generally use those for cleaning (though this last time I accidentally bought latex and am using them--but normally so not). What I've learned to do here when really turning over soil is to use some gardening gloves we bought in bulk cheaply at Home Depot, which I don't feel bad about trashing one of if it comes into contact with peanut while gardening. If I am doing lighter work or tending pots, I'll use my "real" gardening gloves.

What I am worried about now is that the squirrels will hide peanuts in our tomatoes, chives, basil, etc., which are in pots in the back--not far from the pile of peanuts. 

At this house most of our gardening is in the front--where we see the little critters have buried peanuts.

Dangit. They are not paying attention to my peanut free household signs. JK. I only had a teal pumpkin last fall, and they adored it but didn't interpret it correctly.

Sigh.

I def will do the Texas Pete's spray!

DS doesn't mow the lawn all summer but does some of it. Part of it we have little frogs in the yard, and it really got to him.  But he could mow now (after this production and the next Speech tourney). And I want to make sure peanut isn't going to fly up at him.
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on April 27, 2015, 07:04:14 PM
Whoa, scary!  If the hot sauce doesn't deter them, you may have to set up a chicken wire fence around your plants.

I just returned from a Girl Guide training weekend.  The catering was supposed to be free from blatant nuts and peanuts... but of course, peanuts and tree nuts made their presence at breakfast and snack: on ice cream bars, on muffins, in cookies.  Yes, a good thing I brought all my own food. 

The organizer (a doctor) saw the nuts and rushed to find me to warn me not to enter the room with nutty snacks.  Two of my friends came to warn me too, both cross with the caterers, and sat with me to make sure I was ok.  I was frozen in fear for the next hour as everyone finished their snacks and were touching everything in sight.  And we just went over Maslow's triangle of needs that morning...  *sigh*

I'm submitting my application for special diets coordinator for the big Girl Guide camp next summer (Guiding Mosaic 2016, if any of your girls wish to attend).
Title: Re: Living with Food Allergies, 2013 and on
Post by: YouKnowWho on April 27, 2015, 09:58:06 PM
For the first time ever, all of my kids got a chance to enjoy food at a party (including cupcakes) that I did not prepare.  We made friends with a little girl who shares all of the same allergies.
Title: Re: Living with Food Allergies, 2013 and on
Post by: Macabre on April 27, 2015, 10:20:39 PM
Wow. Wow. Wow. That is huge!! Huger than for those of us who just deal with peanut. I am so happy for you!
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on April 28, 2015, 07:24:53 AM
That is amazing YKW!!!
Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on April 28, 2015, 07:58:54 AM
Mac -- possible soluton is to go get a big bottle of TX Pete Hot Sauce and mix a strong solution (with water) in dedicated spray bottle.  Spray that area where the squirrels have been leaving the pnut shells . . . will have to reapply after rain and after mowing . . . may help get them to move on to somewhere else.

Next time you are at a Walmart or other CVS / Walgreens, get a box of disposable vinyl (not latex) gloves and tuck in your pantry.  You'll be so glad you have these for all kinds of surprises.

OH NO!!!  Don't do this!  OK, maybe based on your yard you can.  My squirrels moved to the cover of the sandbox and to the deck when I did this!  The deck was the worst!  They'd sit under the furniture and munch away and then......I caught one on the table!

Better to leave them in the grass!
Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on April 28, 2015, 07:59:42 AM
For the first time ever, all of my kids got a chance to enjoy food at a party (including cupcakes) that I did not prepare.  We made friends with a little girl who shares all of the same allergies.

Now there is a BFF!  How great!
Title: Re: Living with Food Allergies, 2013 and on
Post by: LinksEtc on May 01, 2015, 09:39:59 AM
Dd's school has asked for my input as they struggle w/ school food policy & FA.  Will have to think about this ... I think I'll just gather some good info for them (suggestions welcome) ... not, not, not in the mood for other FA advocacy stuff or wading into cupcake war territory.  I really like our school nurse.
Title: Re: Living with Food Allergies, 2013 and on
Post by: ninjaroll on May 01, 2015, 09:58:06 AM
CDC NSBA guidelines

It's comprehensive, well done and has credibility.

FARE-COPAA amicus brief

Same as above but describes needs in terms of access for FAPE but not preachy or aggressive.  At the end it mentions the all important return to unique needs by, for once, including that not all students affected by LTFA are in general education.

I'd cap it at two comprehensive, well written and credible sources. 
Title: Re: Living with Food Allergies, 2013 and on
Post by: LinksEtc on May 01, 2015, 10:05:41 AM
Thanks NR.   :heart:
Title: Re: Living with Food Allergies, 2013 and on
Post by: ninjaroll on May 01, 2015, 11:17:19 PM
A dear friend of mine made an unwise choice to give me the type of allergy 'advice' that would kill my kids in order to 'cure' them.  Not today, dear.  Not today.  Feeling salty as I did today I'd be surprised if she ever brings it up again. 
Title: Re: Living with Food Allergies, 2013 and on
Post by: CMdeux on May 02, 2015, 11:04:08 AM
  Oh good.  At least it wasn't me.   :hiding: :misspeak:
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on May 05, 2015, 06:38:28 PM
Trying to plan our next trip to America.  Allergy-aware airlines cost more than double that of super nutty practically hazardous ones. Boo. Time to look at other options.
Title: Re: Living with Food Allergies, 2013 and on
Post by: Macabre on May 06, 2015, 07:32:14 AM
Yep.

It's always an issue. It's more of an issue for our family now that DS is on a school team that flies. When it's just our family, it's assumed we will not fly those airlines. We only pay attention to the prices of the other ones. But the school is looking for the least expensive one.
Title: Re: Living with Food Allergies, 2013 and on
Post by: ajasfolks2 on May 06, 2015, 08:02:27 AM
Back to squirrels.

You can always get a Hav a hart trap and trap and release them elsewhere.

My parents have done that for years.  HOWEVER you MUST not leave the trap set at night unless you want to catch a skunk.

 ;D
Title: Re: Living with Food Allergies, 2013 and on
Post by: Macabre on May 06, 2015, 06:23:13 PM
Oh goodness I wouldn't be able to catch all the squirrels. I think the population must be like 5 million. ;)

DS is fine with the squirrels doing this, because it means he doesn't mow. ~) the PA toddler next door--more of a problem for him.
Title: Re: Living with Food Allergies, 2013 and on
Post by: CMdeux on May 06, 2015, 09:27:49 PM
I totally read that wrong.

I was seriously wondering why on earth your DS would meow to begin with-- and wouldn't having LOADS of squirrels around make it more likely, rather than less so??

 :misspeak:   ;D


I also think that it's at least 5 gazillion squirrels, if I recall life in your neck of the woods correctly-- and I'm pretty sure that I do, since I remember fuming that my toddler couldn't safely play in the yard.  {sigh}

We fantasized rather openly about building a squirrel-catapult that last summer there. 


Title: Re: Living with Food Allergies, 2013 and on
Post by: Macabre on May 07, 2015, 05:44:42 AM
Nothin' to do with FAs but funny:  when my mom lived with us (she did for a time) in our previous state, she said she had watched a baby squirrel all morning. She went on and on about the baby squirrel. The three of us finally realized it was a chipmunk. there are no chipmunks whee she came from. Prairie dogs, yes. Chipmunks, no. (Hey--I only saw black birds and brown birds growing up in the dessert. I saw pictures of cardinals and blue jays, but I wasn't oositive they actually existed. And squirrels weren't around either when I was growing up.)  "Baby squirrel" is a thing for the three of us. We think fondly of my mom when we exploit the term. It makes us chuckle. :)

I think we need to. Ask the neighbor to use sunflower seeds. We haven't met this neighbor yet. We have the dog barking neighbor, the loud music neighbor to the left of them. And the peanut neighbor to the left of them. It's the music one that bothers me the most actually.

Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on May 07, 2015, 08:06:39 AM
It snowed yesterday.  A lot (knee-deep in some areas).  Neighbour down the street used bird seed with peanuts in it on their driveway instead of sand.  Right next to the community post box too.  Thankfully people here don't feed the squirrels.  Fingers crossed that bird seed guy will keep his peanut-seed in the bird feeder from now on.
Title: Re: Living with Food Allergies, 2013 and on
Post by: LinksEtc on May 07, 2015, 10:12:30 PM
Well, dd had 2 tiny bites of shrimp without reaction today so good news.

She seems to have something against shrimp & did not want to eat any.

I bribed her.    :misspeak:    :hiding:


---


The walnut thing, however, is not consistent ... sometimes fine, sometimes slight mouth itch.
Happened once with grapes too.
I'm thinking this stuff is probably OAS.
That herbal tea rxn, though, my bet (FWIW) is on true allergy.
I always seem to play the "guess the diagnosis" game before appointments.


Title: Re: Living with Food Allergies, 2013 and on
Post by: GoingNuts on May 08, 2015, 07:17:55 AM
I get itchy mouth from walnuts as well - OAS for me.  They're fine if they are well toasted, but raw or lightly baked?  Nope - itchy and tingly.  And red grapes make me itch as well, but not green.
Title: Re: Living with Food Allergies, 2013 and on
Post by: LinksEtc on May 08, 2015, 10:59:41 AM
Yeah, they were red grapes &

add expired graham crackers to the list.  What the *#%.
Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on May 08, 2015, 12:58:55 PM
DS2 who has no food allergies experienced a season of mouth itchies with grapes about 3 or 4 years ago.  After 3 different tries the pediatrician said to avoid for a year.  The next year he could eat them just fine.  The pediatrician thinks it was what the grapes were treated with rather than the grapes.  He eats them all the time now.
Title: Re: Living with Food Allergies, 2013 and on
Post by: Macabre on May 08, 2015, 01:35:14 PM
Wow. That is interesting PC.
Title: Re: Living with Food Allergies, 2013 and on
Post by: notashrimpwimp on May 10, 2015, 01:04:34 AM
Living with food allergies means making a decision between inclusion and safety and then answering questions while trying to remain polite yet distant from encroaching food.

Living with food allergies means remembering everything you can't eat/touch/be in the same room with.

Title: Re: Living with Food Allergies, 2013 and on
Post by: YouKnowWho on May 10, 2015, 10:39:55 PM
Finally made GF wacky cupcakes and they were awesome.  Where has this recipe been all my life??  I honestly had no idea they were GF which made them even better!
Title: Re: Living with Food Allergies, 2013 and on
Post by: hezzier on May 11, 2015, 10:31:45 AM
YKW- can you post in recipes?  I have a friend that just went GF on the advice of her doctor.
Title: Re: Living with Food Allergies, 2013 and on
Post by: YouKnowWho on May 11, 2015, 10:50:26 AM
Done - I included the link and my modified additions.  I know Krasota uses other flour blends as well. 
Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on May 15, 2015, 11:03:47 AM
Feeling helpful when a mom I don't know very well calls for advice about her child eating in the school cafeteria and later the same day a school nurse (from another district) calls to ask my opinion about some accommodations.
Title: Re: Living with Food Allergies, 2013 and on
Post by: GoingNuts on May 15, 2015, 11:17:40 AM
 :thumbsup: PC!
Title: Re: Living with Food Allergies, 2013 and on
Post by: Macabre on May 19, 2015, 04:21:03 PM
I ate bread outside my house twice (yes, twice) last week.  And I could go years without that happening, outside of Wendy's. 

At the Speech banquet, they served Sister Schubert's dinner rolls. There is no sesame in the factory, and when I asked about sesame, they said they'd need to get back with me because they needed to check the "natural flavors" (or something like that), because they knew sesame could hide there. 

<swoon>

And DH and I went out to eat Saturday night at Surly Brewing Company, and they served King's HAwaiian Rolls with the brisket plate I got. Cornbread was a side. Well, I haven't seen cornbread (and real cornbread) on a menu sense leaving Virginia.  And rarely there.  So yep--I got both the cornbread side and the rolls. That and brisket made my meal.  :misspeak:  And some amazing beer.

TWICE bread out!  :thumbsup:
Title: Re: Living with Food Allergies, 2013 and on
Post by: SilverLining on May 21, 2015, 02:32:01 PM
I sent an e-mail asking if this company labels when there is a risk of cross-contamination with my allergens.

Here is the response I got.

Quote
With regards to allergens, our labels on our products specify those that are present. Our company and all our suppliers do our best in avoiding cross contamination however, declaring and getting our facilities certified as “nut-free”, “peanut-free”, or “sesame free”, entails much more and we opt instead, to go with our current practice of declaring allergens available in the product`s ingredients.
I hope this answers your inquiry.

Well...no, it doesn't really answer my question. I was not not asking about a "free" certification. Just a considerate label of "may contain".  But I'll just assume your product is poison to me.
Title: Re: Living with Food Allergies, 2013 and on
Post by: CMdeux on May 23, 2015, 11:28:50 AM
SO DH brought home a sizeable chunk of rhubarb-walnut bread-- he snickered and offered it to me, saying "I don't think that {DD} or I are going to be competing for any of THIS, but it's yours if you want it."

So I did-- and I waited until he had left this morning, figuring that DD16 has never had ANY problem with walnuts, and well-- coprocessing not much a thing with the nuts that we know she IS allergic to (Peanut, pistachio, cashew)-- and she's been around pecans, etc...

warmed it for 20 s in the microwave (this means not quite to room temperature-- and it was in the same container that it came in), and she, sitting in the adjacent room--


her nose started to POUR... sneezing, red eyes, sniffling


 :disappointed:


Guess we know, now.  I think I'll consider this her walnut challenge.  Right, then.  I'll just be adding THIS one to the medic-alert list.   :-/  Better to know, though, right??

RIGHT??



Title: Re: Living with Food Allergies, 2013 and on
Post by: Macabre on May 23, 2015, 12:55:34 PM
Oh no!  Have you taken a flame thrower to the microwave? 

I'm sorry her list is now longer. :-/
Title: Re: Living with Food Allergies, 2013 and on
Post by: ninjaroll on May 23, 2015, 01:15:10 PM
I'll note it, too. We don't keep nuts in the house (as you know) but I make sure there's an inventory of allergen management that includes Sky.
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on May 23, 2015, 03:42:30 PM
Yes, better to know, and to find out this way than through accidental exposure elsewhere or out on her own.   :grouphug:
Title: Re: Living with Food Allergies, 2013 and on
Post by: GoingNuts on May 23, 2015, 03:44:26 PM
Ay yi yi.  That is no bueno.  I'm so sorry CM and Sky.  :console:
Title: Re: Living with Food Allergies, 2013 and on
Post by: ninjaroll on May 26, 2015, 11:12:33 PM
The pollen chunks are so chunky if I ran around outside with my mouth open I could play live action PacMan. (< * * * *
Title: Re: Living with Food Allergies, 2013 and on
Post by: CMdeux on May 27, 2015, 10:29:46 AM
Wheeeeeeeee---


this is that two week span where the valley fills with distinctly YELLOW smog...



only...


um....







not-so-much.  It's particulates!  From this:


(http://static.panoramio.com/photos/large/13778909.jpg)


I, um... may actually know where that picture was taken, I think.   :hiding:

That isn't mist/haze, hanging above the field-- it's POLLEN. 

Title: Re: Living with Food Allergies, 2013 and on
Post by: ninjaroll on May 27, 2015, 01:10:19 PM
We stupidly went out.. OMG evil stuff. The fluff nailed all of us.
Title: Re: Living with Food Allergies, 2013 and on
Post by: CMdeux on May 27, 2015, 01:39:01 PM
http://charlesandhudson.com/seed_for_yourself_a_visit_to_the_grass_seed_capital_of_the_world/




:rofl:


Yes.  Really.  "Grass Seed Capital of the World" is apparently a thing.   And I live nearby.

ACHOO!
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on May 27, 2015, 01:51:50 PM
The running trails this morning looked as if it had snowed. Only that white fluff wasn't snow, it was poplar fuzz.

Last weekend my dad had to power wash the truck because it was covered in a thick layer of pollen.  It was gross.

I feel bad for people with severe pollen allergies; you cannot avoid it. One reason we decided to get central air conditioning actually, so we didn't have to open the windows and let all the pollens in to irritate my husband's allergies.  Hang in there, spring is almost over.  :(

Good discovery today: Namaste baking mixes don't contain potato!  Yay!  (This means I can eat Mickey waffles at Walt Disney World in October - at select restaurants, as some others use Bob's Red Mill mixes.)  :thumbsup:
Title: Re: Living with Food Allergies, 2013 and on
Post by: LinksEtc on May 28, 2015, 09:11:32 AM
KFA tweeted this ...

Too funny!


http://thedailyshow.cc.com/videos/kjc2ca/along-came-pollen
Title: Re: Living with Food Allergies, 2013 and on
Post by: CMdeux on May 28, 2015, 11:58:46 AM
:rofl:

Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on May 28, 2015, 12:41:19 PM
Funny!
Title: Re: Living with Food Allergies, 2013 and on
Post by: SilverLining on May 29, 2015, 02:39:42 PM
KFA tweeted this ...

Too funny!


[url]http://thedailyshow.cc.com/videos/kjc2ca/along-came-pollen[/url]


This is what I get.

(http://uploadingit.com/file/k6tirceoufkvezfe/Mobile%20Photo%2015%2038%2048.jpg)
Title: Re: Living with Food Allergies, 2013 and on
Post by: LinksEtc on May 29, 2015, 03:10:33 PM
Oooooh, sorry SL.

That's not so funny.   :-/
Title: Re: Living with Food Allergies, 2013 and on
Post by: SilverLining on May 29, 2015, 03:30:55 PM
Well, it's funnier than the usual message.
Title: Re: Living with Food Allergies, 2013 and on
Post by: LinksEtc on May 29, 2015, 03:40:15 PM
Well, it's funnier than the usual message.


I'm afraid to ask ... what's the usual message?
Title: Re: Living with Food Allergies, 2013 and on
Post by: SilverLining on May 29, 2015, 05:34:02 PM
Usually either just an ERROR message! or something about not available in your area. But Jon Stewart takes the sting out.  ;D

And, though I'm not positive, I think it's blocked because of agreement with the Canadian government. There are rules regarding the advertisements on tv and sometimes it's noticeable that ads are changed as they cross the border. We don't see Super Bowl ads during the game, and ads during American Idol used to be changed too, though I don't know if they still are.
Title: Re: Living with Food Allergies, 2013 and on
Post by: LinksEtc on May 29, 2015, 06:09:59 PM
 :)
Title: Re: Living with Food Allergies, 2013 and on
Post by: ninjaroll on June 01, 2015, 04:07:06 PM
... and mystery hives. Of course, can't enjoy success without the slam back down into hard reality.
Title: Re: Living with Food Allergies, 2013 and on
Post by: CMdeux on June 01, 2015, 05:23:35 PM
:console:




At least the rain has knocked the pollen levels down.   So that part is good.



Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on June 01, 2015, 09:25:52 PM
That moment when you read your travel medical insurance and realise your last severe reaction was within the timeframe that could void or complicate the insurance. But then realize they never gave me oxygen so despite being in hospital, I should be in the clear. The restriction specifically states emergency requiring oxygen. Phew!  (My oxygen levels were consistently 100%, which I was told is unusually high for even a normal healthy person, yet alone one with asthma who just experienced anaphylaxis. Counting my lucky stars there.)
Title: Re: Living with Food Allergies, 2013 and on
Post by: LinksEtc on June 02, 2015, 02:42:01 PM
I saw Homa tweet this today:


Quote
Anyone know how to obtain financial records for a non-profit short of a FOIA request? Doing some research re: #foodallergy non-profits.


I'm thinking somebody here probably knows the answer.

BTW, I have no idea what she is up to.  Unpredictable, that one is.

Title: Re: Living with Food Allergies, 2013 and on
Post by: ninjaroll on June 02, 2015, 02:53:01 PM
Financial records is pretty broad request. The best starting point would be their 990 or any other open source disclosure. I'm not sure FOIA is the tool for say their internal controls if they don't publish them, or how much redaction would erode the purpose in seeking whatever it is one would seek. Ask me a year from now and I'd have more in depth answers.

Not so ha-ha funny to see a FOIA production about 80% redacted. Try IRS home page after exhausting open source options.

Tell you what. Send me a PM on which one then let me see what I dig up if you want... when I have the time.
Title: Re: Living with Food Allergies, 2013 and on
Post by: LinksEtc on June 02, 2015, 03:30:10 PM
Ninjaroll,

If it's ok with you, I'll reply to her tweet referencing your post ... then you 2 can pm ... I know I keep saying it, but I've got to cut back on FA stuff ... I don't want to get involved except to connect her w/people who can help.

Title: Re: Living with Food Allergies, 2013 and on
Post by: ninjaroll on June 02, 2015, 03:55:33 PM
Sure, tweet away. I've got a name for her to reach out to: Scott A. Hodes. He's got an everything FOIA blog. If she needs to name the connection it's related to American Society of Access Professionals. They should be able to chat. He's one of the presenting experts at the ASAP workshop in Denver. I'd hit him up before he takes off for the workshop to follow up with any remaining specific questions his blog doesn't address.
Title: Re: Living with Food Allergies, 2013 and on
Post by: LinksEtc on June 02, 2015, 04:01:58 PM
Thanks NR.   :heart:


-------



This is not a FA story, but a health one ... close enough I guess.

My mom told me the other day that she "pulled a Karen"  ...

what does this mean, you might wonder?

She had to go to the ER again ... but she went this time fully armed w/her recent medical history ... the doc would ask her a ?, and she'd whip out a scan or a test result ... well prepared, she was.  Turned out to be something minor & she got to go home.

I'm not sure what to think about this being named after me.


 :coffee:


Hmmm ...


One of our former docs (lovingly, I like to think) called me "the historian".



I'll take one of these again =>    :hiding:



Title: Re: Living with Food Allergies, 2013 and on
Post by: YouKnowWho on June 02, 2015, 06:20:16 PM
I learned today the daycare at the gym has stock epi (jr and sr) on hand.  I usually just hand the med bag over to the girl at the counter (they are aware of the kids allergies).

Turns out they are epi trained, CPR trained and basic medical emergency trained.

Why do I feel better about the gym daycare than the school?  (Nurse excluded on training but no stock meds).
Title: Re: Living with Food Allergies, 2013 and on
Post by: hsw24 on June 02, 2015, 06:48:08 PM
Financial records is pretty broad request. The best starting point would be their 990 or any other open source disclosure. I'm not sure FOIA is the tool for say their internal controls if they don't publish them, or how much redaction would erode the purpose in seeking whatever it is one would seek. Ask me a year from now and I'd have more in depth answers.

Not so ha-ha funny to see a FOIA production about 80% redacted. Try IRS home page after exhausting open source options.

Tell you what. Send me a PM on which one then let me see what I dig up if you want... when I have the time.

You guys are awesome - I am in some information gathering phases to understand what agendas may be at play for different organizations depending on their donors.  That isn't to imply that they're influenced as much as I wonder how transparent they are about their sponsors to their smaller (individual) donors.  Granted, I have people I care for and esteem at a number of FA non profits so I'm not going to stir up trouble as much as get a handle on some big issues troubling me (sesame of course but also the cost of epinephrine in the United States).  I am aware that the peanut board donates money to FA non-profits, for example, but I don't know how much.  Same goes for the pharmaceutical companies.  For the Allergy Law Project right now we're working on a post about the Gleason/United decision and that's another one that is frustrating because it is obviously an area that needs a change in the law but I want to see how best to approach any options.  In my "spare" time of course.    ;D

Random aside, I'm hearing about families in stock epi states not sending their kids to school with epis because they're relying on the school stash.  Anyone else hearing that? 

Oh, and that FOIA blog is awesome.  Bookmarked!
Title: Re: Living with Food Allergies, 2013 and on
Post by: SilverLining on June 03, 2015, 06:04:33 AM

I'm not sure what to think about this being named after me.


Sounds like a compliment to me.

I learned today the daycare at the gym has stock epi (jr and sr) on hand.  I usually just hand the med bag over to the girl at the counter (they are aware of the kids allergies).

Turns out they are epi trained, CPR trained and basic medical emergency trained.

Why do I feel better about the gym daycare than the school?  (Nurse excluded on training but no stock meds).

I thought gym's required first aid treatment because of the risks of injury and heart attack. When my kids first started school the only teachers with first aid treatment was the gym teacher. (We have no nurses in school.)
Title: Re: Living with Food Allergies, 2013 and on
Post by: Macabre on June 03, 2015, 10:02:13 AM
Hsw24 we are in a stock Epi state and this year after spending $120 for the epis for the nurse office at our high school, the nurse said that she keeps several new epis there--basically said there is no need. Next year I may not by extra for the nurse's office and may just make sure the ones he keeps in his locker (for an extra set to have on weekends and nights) srew current enough and not yellow. 
Title: Re: Living with Food Allergies, 2013 and on
Post by: YouKnowWho on June 03, 2015, 10:28:51 AM
We are in an optional stock epi state.  Our county refuses to pay to stock them or seek out how to do it.

Title: Re: Living with Food Allergies, 2013 and on
Post by: ninjaroll on June 03, 2015, 11:53:11 AM
Same goes for the pharmaceutical companies. 

Based on what you're doing and stated goals it would not be a bad idea to consider a primer from CMdeux on the way the industry works, more so because you're also heavily pursuing the FDA as a consumer advocate rather than related business or academic insider. Many of those industry ties are nearly indistinguishable from academic ties. Knowing that ecosystem might help avoid invalid conclusions of influence while potentially enhancing the ability to detect more nuanced patterns.
Title: Re: Living with Food Allergies, 2013 and on
Post by: ninjaroll on June 03, 2015, 12:19:32 PM
Upon further thought (and waiting for a NYC office to call back) the second part of a solid knowledge building 1-2 combo is Macabre for an overview of the world of nonprofit donations with regard to individual members and corporate or institutional giving including donation forms such as stocks or physical goods or services.
Title: Re: Living with Food Allergies, 2013 and on
Post by: hsw24 on June 04, 2015, 02:53:45 AM
"Knowing that ecosystem might help avoid invalid conclusions of influence while potentially enhancing the ability to detect more nuanced patterns."

That is exactly what I am aiming for, ninjaroll - thank you! 

I know from my line of work that bias doesn't instantly follow compensation - if it were the case I wouldn't be able to advise clients of the merits of their case in a level headed way.  Still, I do wonder about non-disclosure of funding ties and what that awareness might bring in terms of small-time donors.
Title: Re: Living with Food Allergies, 2013 and on
Post by: LinksEtc on June 04, 2015, 08:28:09 AM
This may seem obvious ... don't make your child laugh when she is trying to hold her asthma med puff for 10 sec.



 :dunce:
Title: Re: Living with Food Allergies, 2013 and on
Post by: Janelle205 on June 04, 2015, 12:40:37 PM
This may seem obvious ... don't make your child laugh when she is trying to hold her asthma med puff for 10 sec.



 :dunce:


Well, I guess there is a benefit to my doc's recommendation that I take all of my meds via neb...laughter is allowed. :)
Title: Re: Living with Food Allergies, 2013 and on
Post by: LinksEtc on June 04, 2015, 01:16:28 PM
This may seem obvious ... don't make your child laugh when she is trying to hold her asthma med puff for 10 sec.



 :dunce:


Well, I guess there is a benefit to my doc's recommendation that I take all of my meds via neb...laughter is allowed. :)



I'm guessing that in previous studies of neb vs puffer/spacer, laughter as benefit/risk was not adequately considered.   ;D
Title: Re: Living with Food Allergies, 2013 and on
Post by: Janelle205 on June 09, 2015, 10:45:50 PM
I have been soybeaned.

I don't know what it was, but that is the only thing that makes me this miserable.  Luckily, I never have life threatening issues from soy, just intermittent stomach cramping that will make you wish you were dead.

If this doesn't go away I will have to wake DH up to do baby duty tonight.
Title: Re: Living with Food Allergies, 2013 and on
Post by: LinksEtc on June 11, 2015, 04:30:32 PM
Oh my gosh ...

How funny is this?!?


Tweeted by @allyc375 aka "Maelstrom of mayhem"

Quote
@DavidGilbert43 Am now comfort eating. pic.twitter.com/aqqkqlxkQF



https://mobile.twitter.com/allyc375/status/609105940315553792/photo/1


-----------------



ETA - seems like the idea was hers so want to credit
http://www.karenandrews.com.au/2014/04/14/monty-python-killer-rabbit-easter-cupcakes/



A different spin 4 our FA cupcake troubles?





Title: Re: Living with Food Allergies, 2013 and on
Post by: LinksEtc on June 12, 2015, 05:32:45 PM
I'm thinking that it may be time to retire my twitter acct ... I think it's served its purpose ... probably won't delete, just leave inactive so I can DM if I need to & read stuff that I find interesting.

My tween discovered it from my phone and is now totally making fun of me & checking in to see if I updated anything. 

Hoping she will get bored before she makes the FAS connection ...

Things have become so complicated with this SM stuff lately.

Glad most of my posts are links.



 :coffee:




Title: Re: Living with Food Allergies, 2013 and on
Post by: CMdeux on June 14, 2015, 11:21:36 AM
 :grouphug:


Me, on the other hand-- I led my kid here.   :hiding:
Title: Re: Living with Food Allergies, 2013 and on
Post by: LinksEtc on June 14, 2015, 12:21:28 PM
:grouphug:


Me, on the other hand-- I led my kid here.   :hiding:



yk, my younger dd w/ the FA ... I've always been pretty open with her about everything.  In fact, she was sitting next to me the other day, and we tweeted together about 2 things she said & I asked her permission before tweeting her age.  She was thrilled to take part and contribute ... she thought that it was so cool.  I could see her being a member here one day if this place is still here.

The other dd, the tween (no FA) ... a whole different story with that one, there is ... which I can't get into here.



To tell you the truth, I'm pondering retiring "Links" soon also (although not quite yet).

-----


ETA - the nice thing about "Links" for me is that I can easily fall back into strictly "posting links" mode ... nothing too personal ...




I started online b/c of the sesame labeling & now the petition has been filed & others have taken up the cause & are leading the way.



Like I said ... complicated ... transition point.






Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on June 17, 2015, 07:20:36 AM
Bought a case of Minutemaid Lemonade in the can.  We've been using it. 

We are in the middle of nowhere at a softball tournament this past weekend.  Seriously, nowhere, there is a wind turbine, an off brand gas station and 1 dunkin donuts.

DD opens a can....it's a lemonade can from the lemonade can case, filled with some kind of soda!  I'm yelling spit it out, don't swallow!  We don't know what it is.  She's like, well, it's soda.  Probably....but what if you get anaphylaxis?  and I'm also thinking about the tainted Tylenol.  And we are in the middle of nowhere!

Even lemonade is stressful!
Title: Re: Living with Food Allergies, 2013 and on
Post by: SilverLining on June 17, 2015, 07:50:44 AM
 :o

Did you keep it to report it.
Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on June 17, 2015, 10:46:55 AM
No, I thought about that but we were in the middle of a tournament away from home and at that point, I just didn't want her to drink it.
Title: Re: Living with Food Allergies, 2013 and on
Post by: LinksEtc on June 26, 2015, 09:32:58 AM
I'm starting to think that when patients are so active in a particular community like FA  ... boundaries just do get crossed/blurred sometimes ... it's not that you mean for it to happen ... things are just different.

Our family deals with a lot of different docs ... most of those relationships are "normal" ... contact docs / make appointment when have medical concern ... don't think too much about those docs or health issues otherwise.  Just normal stuff.

My last 2 relationships with allergists have been anything but normal ... one I strongly disliked ... our current one - I think that I like too much & I find myself wanting to chat like I do at FAS.

My main allergy issues that I'm struggling with don't have much to do w/ dd's medical condition of FA - I'm more confused about boundaries, roles, internet, identity (Links/mom).

I'm thinking that things will eventually settle at a slightly different type of "normal".




Title: Re: Living with Food Allergies, 2013 and on
Post by: SilverLining on July 02, 2015, 08:49:06 PM
DH bought a candy that we've never had before. They look good. I looked the company up and went straight to the FAQ page.

Under do your candies contain allergens is says this.

Quote
We also list all the ingredients that the product may contain or may have been in contact with by using the words “may contain”.

Under are your candies peanut free it says

Quote
We use the following symbol to identify all products that do not contain peanuts. Please look for this symbol on the front of the package to enjoy our products safely.
<peanut free symbol shown>

This bag has no "may contain" and has no "peanut free" and does not list peanut as an added ingredient.

So....what does that mean?

I've sent them an e-mail, but....is it just me?
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on July 02, 2015, 09:00:02 PM
[sarcasm]Hurray for inconsistent and confusing labels.[/sarcasm] :tongue:

I would ask if they just recently added the peanut free emblem and packaging hasn't caught up, or mention that consistency is required for safety.  Ugh.  Good luck and hope it is safe.

I am battling another company who removed all their cautionary labels.  Nothing they make is safe due to shared lines, and old labels reflected that, but now people think they are safe.  Grrrrr!!!
Title: Re: Living with Food Allergies, 2013 and on
Post by: SilverLining on July 02, 2015, 10:03:38 PM
I actually have hope that it's safe. Either way, once. I know I'll post so you and others know. :)

My suspicion is....the peanut free label is reserved for foods that they get letters from suppliers and/or test product for peanut protein. 

I've also asked them if sesame seed is one of the allergens they label for "may contain".
Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on July 08, 2015, 12:31:14 PM
Today, DD turned 16.  Today, DD passed her test and got her learners permit to drive.  Today, (for the first time ever) DD walked into a bakery and picked out anything she wanted for her birthday!

She chose 2 cake pops to eat there and brought a dozen of the most beautiful cupcakes home for her birthday celebration!

Happy Sweet 16 DD!

The bakery is a few towns over.  It is Gluten Free, Nut Free, Sesame Free, and to make things dairy free, they use coconut.  Now that DD has safely consumed coconut since her challenge in February I was comfortable with her getting baked goods there.

She is so happy today!
Title: Re: Living with Food Allergies, 2013 and on
Post by: CMdeux on July 08, 2015, 12:45:48 PM
WOW-- that is really neat!!

Title: Re: Living with Food Allergies, 2013 and on
Post by: GingerPye on July 08, 2015, 12:46:50 PM
Ohhhh, that's terrific, PC!  Happy Birthday to your DD!
Title: Re: Living with Food Allergies, 2013 and on
Post by: GoingNuts on July 08, 2015, 08:46:41 PM
Happy Birthday to your DD, PC - it sounds like she had a memorable day.  :)
Title: Re: Living with Food Allergies, 2013 and on
Post by: Macabre on July 08, 2015, 09:58:10 PM
PC what a great birthday! That is so cool. :yes:
Title: Re: Living with Food Allergies, 2013 and on
Post by: momma2boys on July 08, 2015, 10:58:56 PM
That is awesome! I know it would make my ds very happy. Hope she had a great birthday!
Title: Re: Living with Food Allergies, 2013 and on
Post by: becca on July 09, 2015, 08:43:33 AM
Awesome, PC!  Congratulations and Happy Birthday to your dd!!  Best day ever!

So, is that bakery PN AND TN free??  I think we need a road trip! 
Title: Re: Living with Food Allergies, 2013 and on
Post by: SilverLining on July 10, 2015, 08:20:10 AM
DH bought a candy that we've never had before. They look good. I looked the company up and went straight to the FAQ page.

Under do your candies contain allergens is says this.

Quote
We also list all the ingredients that the product may contain or may have been in contact with by using the words “may contain”.

Under are your candies peanut free it says

Quote
We use the following symbol to identify all products that do not contain peanuts. Please look for this symbol on the front of the package to enjoy our products safely.
<peanut free symbol shown>

This bag has no "may contain" and has no "peanut free" and does not list peanut as an added ingredient.

So....what does that mean?

I've sent them an e-mail, but....is it just me?

I received the canned "we'll get back to you" response....then nothing. I checked my spam folder, nothing there. I tried to respond to their e-mail (originally I contacted them through their on-line form) and the e-mail bounced back.

So, I had to hunt their site down again.

I copy & pasted my original notice, their canned response, and then let them know I'm disappointed even they can't figure out their labelling....and said I'll just stick with DARE.

<sigh>
Title: Re: Living with Food Allergies, 2013 and on
Post by: CMdeux on July 16, 2015, 01:03:40 PM
That oh-so-awkward moment when you realize that the "crunch" in the deli "crunchy pea salad" that you got... is because it contains cashews.  And yet, you wonder if it's worse to consume it (carefully) or to throw it away without eating it...

 :misspeak: :hiding:


(Where's our "purification by fire" emoticon??)

 
Title: Re: Living with Food Allergies, 2013 and on
Post by: notashrimpwimp on July 16, 2015, 03:44:00 PM
CM, reminds me of when I tried yellow rice and chomped on what I thought was an uncooked grain of rice. Yeah, no. It, too, was a cashew.
Title: Re: Living with Food Allergies, 2013 and on
Post by: hezzier on July 17, 2015, 04:02:28 PM
Learned an interesting tidbit today.  This is the time of year that they (the allergists) see mild reactions to allergy shots.

DS sneezed twice and was itching the back of his throat during our 30 min wait. So they kept us longer, gave him a dose of Zyrtec and then made the doctor check him out.  We got to leave after 65 minutes...glad we didn't need to be anywhere!
Title: Re: Living with Food Allergies, 2013 and on
Post by: CMdeux on July 17, 2015, 07:57:37 PM
You have just described a weekly ritual (with occasional epinephrine and sitting in closer proximity to the crash cart) that often meant a 90 minute "allergy shot" appointment.

We were using 40 minutes long, long before 30 became standard.  {sigh}  DD reacted like clockwork at the 19-28 minute mark for a long time.

Title: Re: Living with Food Allergies, 2013 and on
Post by: hezzier on July 17, 2015, 08:43:44 PM
This was a first for us other than itching occasionally at the injection site.  Also learned another new term: that his throat was cobblestoned.
Title: Re: Living with Food Allergies, 2013 and on
Post by: hezzier on July 19, 2015, 08:47:45 AM
Well, the good news is it wasn't a reaction to the allergy shots, just a coincidence of coming down with a cold. 
Title: Re: Living with Food Allergies, 2013 and on
Post by: CMdeux on July 19, 2015, 09:51:00 AM
Awww-- hope that he feels better soon.

Glad that it doesn't seem to be the injections, though. 
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on July 19, 2015, 10:02:58 AM
And so today I've jumped over the fence onto the 'I don't want to get allergy shots' side.
I'm not afraid of needles.  I'm very afraid of reactions.  :hiding:
Title: Re: Living with Food Allergies, 2013 and on
Post by: CMdeux on July 19, 2015, 12:10:51 PM
Is it horrible that I reflect back upon those days as a fabulous team-building time with our allergist?  He definitely got to KNOW us very well in those days-- and I know that it changed his impression of me from "hysterical mom" to "level-headed and even fairly calm" and dramatically changed his attitudes about DD as a patient-- he knows that she is not exaggerating a thing in terms of her reactivity and sensitivity.

He knows that we aren't over-reactive, if that makes sense.  If anything we tend to UNDER-react very significantly.  That understanding means that when we ask for him to go to bat for DD, he does it, without a lot of skepticism. 

I will also say that I think those experiences opened DD's eyes a lot, too, and let her understand that multi-system symptoms should ALWAYS be taken seriously-- a hive and a runny nose is technically anaphylactic, if mild, and should be monitored closely even if you happen to have a crash cart ten feet away.

Strangely, though, it let us experience a LOT of reactivity at that grade 1 level and as a result, we don't tend to panic during reactions now. 


Does that make sense?  It was valuable, but I never would have said so in the first year.

Title: Re: Living with Food Allergies, 2013 and on
Post by: starlight on July 27, 2015, 09:14:39 AM
When you're fully aware of cross-contamination of foods but forget it can happen with other things.

I tried something new on my hair a couple weeks ago, a heat protectant. Had a major case of contact dermatitis after using it for about a week - woke up with swollen eyes and a rash on my neck. Washed my hair and my sheets and PJ's and stopped using it. I'm still itching, and it finally occurred to me, after not using it for a week, that maybe I'm recontaminating myself with my hairbrush. Ugh.

BTW if you're not prone to contact dermatitis, I highly recommend CHI Silk Infusion. It was amazing while it lasted.  :'(
Title: Re: Living with Food Allergies, 2013 and on
Post by: LinksEtc on July 29, 2015, 03:30:08 PM
DD cracks me up.


We open a new MDI for asthma & she starts singing/rapping:

"2 puffs in the air like you just don't care"

to describe the priming process.


 :)


I could write a book.




Title: Re: Living with Food Allergies, 2013 and on
Post by: CMdeux on July 29, 2015, 03:52:18 PM
:rofl:

Love that!! 
Title: Re: Living with Food Allergies, 2013 and on
Post by: LinksEtc on August 01, 2015, 04:55:49 PM
Well, dh just asked if it would be ok if he didn't go to dd's upcoming allergy appt ... has work to do ... that's fine I guess, maybe even for the best in case the doc opens any of several cans of worms: Links, sesame petition, asthma plan, SM ... oh my ...


 :hiding:   :hiding:   :hiding:



Well, it will be good to know how she wants to handle things ... just talk about dd's medical stuff or get into the other also .... I'm fine either way.  Feeling a bit awkward, but hoping things will be more normal after this appt. 



Do your docs know about your online activities?  Do you talk about it or is it kind of a forbidden topic?  Do any of you chat with your docs on social media sometimes (I've seen at least 1 doc-pt pair chat sometimes about general stuff but others think best to keep distance/boundaries)?  My #1 priority is that they take care of dd ... I don't want that messed up.



Hmmm ...





Title: Re: Living with Food Allergies, 2013 and on
Post by: ninjaroll on August 01, 2015, 08:46:56 PM
I'm unsure if these are state laws but our doctors are forbidden from using social media with us or even email for patient care.  There is an established portal with the medical facilities that we can use to send and receive information. 
Title: Re: Living with Food Allergies, 2013 and on
Post by: LinksEtc on August 02, 2015, 11:28:46 AM
I can't seem to get the interview to play for me at the moment, but if I remember correctly, I think the doc actually gives his Twitter handle to his patients at appts & says they can follow (usually tweets general allergy/asthma educational info):

"Dr. David Stukus Talks Twitter, the LEAP Study and Much More"
http://foodallergyconsulting.com/dr-david-stukus-talks-twitter-the-leap-study-and-much-more/


Whereas I've heard other docs saying they don't want their patients following ... one even blocks his patients, which to me, seems quite extreme.


I get the feeling each doc-pt pair is going to have their own philosophies/preferences.


-------------------


I wish patients could easily choose the level of HIPAA protection they want ... people knowing you're our doc fine, but keep that really private med stuff between us.  In the future, I wonder if pts will sign forms acknowledging anything doc says on SM is not medical adv ... informed consent for SM. 

 :P


Just rambling at this point ... interesting stuff to think about.






Title: Re: Living with Food Allergies, 2013 and on
Post by: CMdeux on August 02, 2015, 02:06:05 PM
I'm unsure if these are state laws but our doctors are forbidden from using social media with us or even email for patient care.  There is an established portal with the medical facilities that we can use to send and receive information.

I think that this may be instititutional practice/protocol, and not state law. 


I also know that not all of the physicians in that practice are particularly pleased with how extreme it has become, either.  Physicians can't even do paperwork without sending it to the Borg now.

Title: Re: Living with Food Allergies, 2013 and on
Post by: Macabre on August 03, 2015, 08:33:24 AM
I interpreted Links' question as more general. Do they know in general.  There are gobs and gobs of allergists on Twitter, many of whom we follow and a number  follow us.


My answer: No idea--wouldn't matter to me if they did. No big deal either way for me.
Title: Re: Living with Food Allergies, 2013 and on
Post by: ninjaroll on August 03, 2015, 01:15:50 PM
No matter how it's asked the answer would be the same.  At least according the rules that our docs have been following.  There's a sort of Fight Club vibe of no talking outside of in person or through their portals, BUT that might be their social media policy.  We can talk briefly over calls though the preference is all routed through the patient portals.
Title: Re: Living with Food Allergies, 2013 and on
Post by: LinksEtc on August 03, 2015, 02:04:16 PM
There's a part in here saying something like "ooooooh, I wouldn't want to be your therapist"

Re: Social Media


 :)


Yeah, kind of thinking (actually I know from past experience) there are allergists that wouldn't want to be my allergist.



Well, if anyone will know how to "handle" this stuff, she will.  Whether she likes me or not, approves of the allergy stuff I've done or not, I trust that she will take care of dd. 


The Links side of me is interested to see how this plays out ... the mom side of me
is more like.  :hiding:   I had separated the 2, now that strategy is probably not going to work so well.





Title: Re: Living with Food Allergies, 2013 and on
Post by: ninjaroll on August 03, 2015, 02:24:01 PM
Why would anyone hold you singularly accountable for regulatory reform?  Say you were to 'blame' it's neither a nefarious activity nor is it limited to food allergies.  Stick to business and he or she should do the same.  Any doctor opening online activity with me might not like staring into that abyss long enough it starts staring back.  Some things I really, truly do not want to know about service providers including like their social media activity.  The probability is too high it eventually leads to things I could happily go to my grave not knowing about him or her.

I'm not insinuating our current local one does anything weird but I'm not looking--ever.  I don't mean to be abrasive but you know me well enough no one will ever accuse me of graduating from charm school.  Going beyond patient scope on my dime is not a relationship I would continue.
Title: Re: Living with Food Allergies, 2013 and on
Post by: LinksEtc on August 03, 2015, 03:51:50 PM
I'm pretty confused by the whole thing, but my gut says I don't need to be worried.

I'm also guessing some things discussed may remain "off the record", no posting.   :P

Thanks for letting me "think" about this a bit.

 :heart:




Title: Re: Living with Food Allergies, 2013 and on
Post by: ninjaroll on August 03, 2015, 03:57:09 PM
Like this: The lion, the dentist and the social media mob

Can't say I have an opinion on the Cecil controversy itself but that dentist chose to keep yapping at virtually any media outlet that would help him broadcast his big game hunting, including his history of related legal troubles. 

Links, you'll never know a person until you know what's on their hard drive... or cloud.  Then you'll wish you never knew to begin with.
Title: Re: Living with Food Allergies, 2013 and on
Post by: CMdeux on August 03, 2015, 04:07:10 PM
^ Yessirree.

Riffing on what Ninja stated-- we live in a SUPER small town-- and we do run into our providers just out and about living here.  He knows that I help moderate/administrate an online support group, and he knows that I tend to post (re-post) interactions with him-- and that sometimes I'll ask questions that I'm specifically going to post about, etc.

He has occasionally-- and VERY judiciously-- used that knowledge to leverage wider visibility for something that was a professional need on his part-- such as the plan to scrap allergy coverage in the state children's insurance coverage a few years back.  I posted his comments directly along with his request to contact state legislators about it.  :)

Pretty sure that such a thing would not be permitted now under the more Draconian "communication center" operating under centralized control.  It kind of seems more and more as though that particular org would be HAPPIEST with telemedicine with a ten second delay, so that they could "edit" doctor/patient interactions more effectively.   :P 

Ahem.

I'm quite confident that Dr. Awesome knows who I am, and where to find me online.  I've never ever, ever cyberstalked Dr. Awesome (not even a little), and as far as I know, he's never cyberstalked me, either.    As ninja notes-- I don't want to stare into that abyss, and I also don't want it looking back-- which is why I still protect my anonymity online, and I don't FB.    There are things that I'm happier not knowing about a physician that I need to seek treatment from.  There are some things that I feel so strongly about that they'd be deal-breaking for me personally, even-- and I appreciate it when a physician understands that our professional relationship needs to stay within certain boundaries.  So as I noted, he knows where to find me.  Don't think that he HAS very often-- but I'm pretty sure he's peeked a bit over the years.  Enough to know that nobody gets away with saying anything crazy here, and that we're pretty pro-AAAAI party-line.    We're evidence-driven, mostly.    I think that reassured him enormously, and it let him know that I really am not using social media (even here) to question his professional judgment, etc.

Title: Re: Living with Food Allergies, 2013 and on
Post by: Macabre on August 03, 2015, 04:31:09 PM
Well, I can't imagine a physician would likely friend a patient on FB. I don't think FB figures into this equation at all. However, FB does provide a great resource for physicians to get information out to the general public and their patients as a whole via their page. But it's not like they can really creep on patients on FB that way anymore than they could elsewhere if they were so inclined.

Twitter is a different animal altogether. And if your allergist were on Tw, you could follow him and it would just not be the same as cyberstalking. In fact, allergy practices want their patients to follow them. It's a way of getting out information. And is simply part of living in the 21st Century IMHO. 
Title: Re: Living with Food Allergies, 2013 and on
Post by: ninjaroll on August 03, 2015, 04:33:17 PM
I would think the biggest concern for any profession that has oversight from an industry operated ethics board and must be insured for malpractice has legitimate concern if social media use by a patient poses a risk on that front.  So, unless you're jeopardizing that relationship at a high enough threshold you may safely proceed to use the internet.

Think about this in terms of your time and cost, Links.  The doctor isn't your boss, he or she is a service provider and should be professional enough to keep it at that level of interaction consistent with their discipline's ethical bylaws.  Quite frankly, having seen the direction that Sicherer has taken of late I'm not sure we'd go back to him.  Knowing my position on things, I'm sure that perspective would be mutual.

And is simply part of living in the 21st Century IMHO.

This says it all. 
Title: Re: Living with Food Allergies, 2013 and on
Post by: GoingNuts on August 03, 2015, 06:13:38 PM
What's going on with Sicherer?  Just curious.  Elder DS went to him years ago, and we loved him.  But alas, he's not on our insurance.  We also love his colleague, Dr. Nowak.
Title: Re: Living with Food Allergies, 2013 and on
Post by: ninjaroll on August 03, 2015, 06:34:48 PM
He's a great doctor and with the exception of one resident all of Sinai is great.  My personal opinion is I don't think Sinai is on the top of the heap of research institutes at this point in time, which is natural because you can't be the leader forever.  The cost to see him is significantly higher because we would have to travel out of state at which point for the total investiture I have to compare him to other accessible options like Stanford.

The main abstract flaw I find in his research to which I disagree the most is his tendency to generalize to an entire population, and the sort of conclusions that reach the public become very distorted when one is not a stickler for keeping limits, validity at the forefront.  That distortion continues in a recursive fashion until it solidifies in the public mind is a dangerously skewed 'truth' that he doesn't seem to be cognizant of.

In short he's become more of a researcher who practices than a practitioner who researches.  I don't think he's got the right distance to maintain balance for proper dialogue and since I'm about 1,000% sure he cares diddly squat about my opinion I have to make a choice to continue to go without in other areas in order to allocate considerable travel funds to see him as a patient.  If I were local to Jaffe I might just pick Nowak.

Sometimes it feels like he's no longer in the driver's seat behind his research.  I don't know if that translates to him taking a larger administrative position over the facility.  Sinai doesn't have that cutting edge I think it had 5 years previous.  I'm looking at Stanford's Parker Center in the near future.
Title: Re: Living with Food Allergies, 2013 and on
Post by: LinksEtc on August 04, 2015, 03:32:30 PM
I'm going to take an online break (really) ... yeah, there are a few loose ends, but I'm feeling mostly "done" if that makes sense ... did what I wanted to do w/ the sesame labeling & pretty much said what I felt needed saying.


Seems healthier if I back off for a while ... this whole Links/mom, public/private divide is a bit much lately, too intense & emotionally draining  ... get more balance, boundaries ... concentrate on IRL stuff.  I'm sure the doc stuff will be fine ... she's very kind & professional.



 :heart:   :smooch:   :heart:




Title: Re: Living with Food Allergies, 2013 and on
Post by: CMdeux on August 04, 2015, 05:19:46 PM
 :smooch:


Completely understand, Links. 
Title: Re: Living with Food Allergies, 2013 and on
Post by: Macabre on August 05, 2015, 03:39:50 PM
Living with FAs: sometimes when you have an interview the next day and you have a lunch meeting at a new restaurant, you avoid eating anything, because you need to know you won't be incapacitated by a reaction.  And even though you detest Pepsi products, you order a Diet Pepsi instead of Iced Tea, because the risk for XC is less with it. 
Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on August 07, 2015, 02:10:38 PM
I did a lot of yard work today.  DH will be shocked.  It was that or baking and I don't need the calories so I opted for the great outdoors to work out my stress.

DD flew for the very first time today!  She's with my sister and they flew Southwest.  I know before they took off she met the pilot and they had no trouble pre-boarding.  I got one quick text a short time ago that they landed and she loves flying!

I am done working outside, relaxing with an iced coffee.

It's been a good day living with food allergies.
Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on August 10, 2015, 03:10:13 PM
DD had a great and amazing day at Discovery Cove yesterday and they were fantastic with her allergy issues both when she was dining/snacking and when she visited exhibits of concern like the aviary.  When I spoke with their dietician last week, she even offered to go out and buy anything special DD would like to have while there.  She had plenty of safe options so that was not necessary, but wow!  What an offer.  I sent them a thank you email this morning.

Sea World will be tomorrow.
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on August 10, 2015, 03:17:52 PM
 :thumbsup: PC!
Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on August 13, 2015, 03:13:53 PM
DD just texted me.  They are about a half hour away.  Sea World was a success.  Plenty of food options.  Her flight home today went very well too.

It will be interesting to hear how my sister fared dealing with allergies.  I have wine chilling for her.
Title: Re: Living with Food Allergies, 2013 and on
Post by: CMdeux on August 13, 2015, 04:00:43 PM
Glad that it all went off without a hitch, PC!

Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on August 13, 2015, 07:12:42 PM
Woohoo, PC!

I reflected today on how my allergy experiences have caused two large organizations to overhaul their food allergy procedures.  And Disney was one of them.  That's some powerful stuff.  We are making a difference here. 

I just booked a tour through Disney for our upcoming trip and encountered their allergy protocols for tour participants, the ones developed after a dangerous near miss with my meal during a tour I took in 2012.

 :yes:
Title: Re: Living with Food Allergies, 2013 and on
Post by: CMdeux on August 13, 2015, 07:43:02 PM
 :heart:  Sometimes those trips down memory lane are sweeter for knowing that they mattered.   :yes:
Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on August 14, 2015, 07:32:15 AM
My sister said she was surprised at the level of care an options not only at Discovery Cove and Sea World, but also at restaurants they went to.  At every place they ate, someone from the kitchen came out an spoke directly with DD before preparing her food.

She also took DD grocery shopping.  She was very impressed with DD's abilities to work with the restaurant staff and her ability to shop for herself.

I know she can but it was nice to hear it from someone else.


spacecanada, so many here like you are "pioneers" who have all changed and impacted allergy awareness across a variety of settings.  It really does "take a village".  DD is 16 and the changes over her short life are impressive.
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on August 16, 2015, 12:26:46 PM
And so the investigation begins: what part of dinner sent me to the hospital last night? My bet is on the new brand of smokies we tried, despite a good label, but I fear it may have been something else. Or, the potato allergy has escalated to traces that may have been in 'natural flavouring'.

Garden veggies and rice only this week. I hate the food fears (and total exhaustion) that come after reactions.
Title: Re: Living with Food Allergies, 2013 and on
Post by: ninjaroll on August 16, 2015, 12:48:29 PM
Oh, space.   :grouphug: Lots and lots of  :grouphug:.
Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on August 17, 2015, 07:57:01 AM
Soooo very sorry and so happy you are OK!  I hope you can relax and mend today.
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on August 17, 2015, 08:00:55 AM
Thanks, ninja and PC.  I am having a difficult time with it all but so happy to have everyone here who gets it.  :grouphug:
Title: Re: Living with Food Allergies, 2013 and on
Post by: rebekahc on August 17, 2015, 10:05:59 AM
I hope you're feeling well today, Space!  New/mystery reactions are the worst for my mental health - hope you can find the cause quickly!
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on August 22, 2015, 04:36:43 PM
Anyone else have a tan line where their MedicAlert bracelet is worn?  Ah, life with allergies has odd amusements.

(I'm still really freaked out by my reaction last weekend.  Physically, I feel much better.  Mentally, I'm a mess. :hiding: )
Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on August 23, 2015, 07:54:15 AM
DD has that tan line!

Hang in there.  Time and reaction free eating will help you.

DD always tightens her comfort zone for awhile.  It takes awhile to trust again.
Title: Re: Living with Food Allergies, 2013 and on
Post by: CMdeux on August 23, 2015, 07:19:47 PM
:console:  Spacecanada. 


Yes, DD has that tan line.  I have a watch tanline, though, which is similar.
Title: Re: Living with Food Allergies, 2013 and on
Post by: ajasfolks2 on August 30, 2015, 09:16:56 PM
School starting up and food allergy needs are handled with ease these days . . . nice to be in this place so far as LTFA.

 :)
Title: Re: Living with Food Allergies, 2013 and on
Post by: hezzier on August 30, 2015, 10:06:18 PM
New teacher, new routine...lots to get used in the new school year.
Title: Re: Living with Food Allergies, 2013 and on
Post by: CMdeux on August 31, 2015, 11:06:04 AM
It does seem that awareness is making a difference, however.  That's a GREAT thing. 

Title: Re: Living with Food Allergies, 2013 and on
Post by: rebekahc on September 02, 2015, 09:07:00 AM
DS's food allergies are getting worse and worse the longer he's off of Xolair.   :(  He called last night and is really worried that he's not going to be able to safely feed himself (in a dorm with a meal plan) before long.  I need to call our old allergist and see if there's any way to get Xolair approved again, but his asthma has been okay - getting slightly worse, but not nearly as bad as it was when he started Xolair before. <sigh>
Title: Re: Living with Food Allergies, 2013 and on
Post by: CMdeux on September 02, 2015, 11:23:33 AM
Oh, Rebekah, I'm so sorry to hear that.  It is downright PAINFUL to have tasted freedom, only to lose it again.   :'(

Can you encourage him to talk to a counselor on campus, at least, to deal with the emotional components of this?  It's really insidious, and has a nasty impact on your overall mental health when stuff like this happens. 

DD's been major-reaction free since about January, but she still has twinges now and then-- but it's been a lot better since she quit eating out so much. 
Title: Re: Living with Food Allergies, 2013 and on
Post by: GoingNuts on September 02, 2015, 11:23:57 AM
Whoa, not good news Rebekah.  :disappointed:  I hope you can get it approved again... Quickly.

 :grouphug:
Title: Re: Living with Food Allergies, 2013 and on
Post by: hezzier on September 03, 2015, 07:50:43 AM
I forgot to post this the other day.  We went to a neighborhood BBQ last weekend.  DS has found 2 other boys on the street that are 11 (although both are in 6th, DS is in 5th).  They hung out together at our house and riding bikes up and down the street while the adults played golf in the neighborhood.  So at the BBQ, I hear a kid's voice saying...if you eat any nuts, stay away from DS's name.  I think it was the first time I've ever heard/seen another kid looking out for DS.
Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on September 03, 2015, 03:25:46 PM
 :thumbsup:
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on September 09, 2015, 02:37:52 PM
Latest Allerject and FloVent refills = $0!!

Reason: I've had so many prescriptions this year that I maxed our co-pay amount.  Three ana reactions and resulting auto injector refills pushed that number over the threshold, certainly, because it's very rare for us to reach the co-pay threshold. For us, that means all our prescriptions for the rest of the year are free.  Woohoo!  In a sort of sad way, but we're on a reduced income right now, so every bit helps.

But my thoughts are with aggiedog and her post about Epipens being so expensive for her. I wish I could share my benefits with some of you. 

And really, it's heartbreaking that life-saving medications cost so much in the first place. 
Title: Re: Living with Food Allergies, 2013 and on
Post by: CMdeux on September 09, 2015, 02:47:23 PM
Wow-- I'd say "that's great" but-- um-- yeah.


:console:

I'm glad that you're getting some relief with the expenses, but I hate how that had to happen for you. 
Title: Re: Living with Food Allergies, 2013 and on
Post by: starlight on September 09, 2015, 09:28:24 PM
Latest Allerject and FloVent refills = $0!!

Reason: I've had so many prescriptions this year that I maxed our co-pay amount. 


Me too! So exciting! I sprained my hand super bad at the beginning of the year + prescription costs now counting toward max out of pocket = all my scripts are now free. Gonna stock up on Auvi's at the end of the year even though I don't need them, just for the hell of it.
Title: Re: Living with Food Allergies, 2013 and on
Post by: Macabre on September 17, 2015, 06:06:18 AM
You'll never guess what I had for lunch yesterday. Ordered from a restaurant. By delivery.



(http://i20.photobucket.com/albums/b205/McCobbre/Mobile%20Uploads/6D701303-C3B7-49ED-84F7-407CB4391516_zps8ggaoxrc.jpg)
Title: Re: Living with Food Allergies, 2013 and on
Post by: Macabre on September 17, 2015, 07:37:00 AM
I actually teared up while talking with the manager. While I was at work.

It was amazing to eat a sandwich like this.
Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on September 17, 2015, 07:51:24 AM
YUMMY!
Title: Re: Living with Food Allergies, 2013 and on
Post by: CMdeux on September 18, 2015, 08:27:58 PM
Wow-- that's WONDERFUL, Mac.    :smooch:

(It looks delicious, too!)
Title: Re: Living with Food Allergies, 2013 and on
Post by: YouKnowWho on September 22, 2015, 07:13:23 AM
4 bags of food and accoutrements plus a cooler.  I might have room for the kids  :misspeak:
Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on September 22, 2015, 07:43:02 AM
LOL!  Been there.
Title: Re: Living with Food Allergies, 2013 and on
Post by: CMdeux on September 22, 2015, 10:09:21 AM
LOL here, too-- sounds like pretty much every trip anywhere, ever.

Our suitcases when we went to Europe were 1/2 shelf-stable food by volume.  {sigh}

What's especially funny about this is that people with FA's, I'm convinced, know how to pack ULTRA light-- to accommodate the food without looking freakish.  We wind up looking "typical" but what we pack...well, way different.

DD and I went away for two weeks.  We each had the equivalent of a single carry-on for our toiletries, clothes, spare shoes, and electronics.   The rest was all allergy-related. 
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on September 22, 2015, 12:55:09 PM
Completely relate!!  We are packing for vacation right now.  Too much of my suitcase is full of shelf-stable food and I'm trying to cut down on clothes to maximize the amount of food I can fit.  Fingers crossed I don't get the same US customs officer as last time who threatened to deny my entry and cut up my passport for having an 'unreasonable' amount of food. Unfortunately, doctors cannot write notes saying you must bring food across the border due to food allergies, as there are legal restrictions on importing foods.  Most officials accept food under 'medical supplies', when accompanied with documentation of food allergy, but not all.  (This particular official was convinced I could easily find safe food in America.)

We pack food in all our suitcases, in case one gets lost.  Having it all in the carry-ons isn't possible due the amount of other medical supplies (8 auto injectors, 3 inhalers, spacer, antihistamines, etc.) and a DSLR camera I wouldn't trust in checked baggage.  (Not all airlines let me take on a bag of medical supplies in addition to the normal carry on.)  I also bake a huge batch of muffins to take with us to eat something 'fresh' for a day or two, since home baked goods are allowed across the border - those go in carry on as well, along with as much fresh produce we can consume before the border crossing, if we have connecting flights.

Also, on vacation I eat to survive, and don't always enjoy it.  Plain rice cooked in the hotel room microwave, mixed with some plain tinned beans and cut up vegetables isn't exactly appetizing, but it's safe.  Especially when you're in a foreign country and don't know which brands have cross contamination, good labelling, etc.  You can only eat so many instant oatmeal cups, bananas, and granola bars in two weeks.  I wonder if I am allowed to bring some seasonings across the border: salt, pepper, herbs??

(I'm wishing we never booked vacation right now... planning food away from home, in another country, is very stressful.  And half our trip will be at Disney!  Even that is stressing me out, though I know it shouldn't.)
Title: Re: Living with Food Allergies, 2013 and on
Post by: ajasfolks2 on October 07, 2015, 07:22:29 AM
In response to recent in-person events:  Seems that more and more I am encountering people with self-diagnosed or faux-medical-professional-diagnosed "allergies" . . . and the manner in which these people present their condition is obviously making it harder for those of us -- who have TRULY DIAGNOSED and REAL life-threatening allergies to foods or things that DO represent danger in an everyday way -- to be taken seriously.

Need a bonking wand these days.

 :bonking:



Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on October 07, 2015, 07:26:08 AM
Make that a double bonking wand!
Title: Re: Living with Food Allergies, 2013 and on
Post by: hezzier on October 20, 2015, 05:22:51 PM
Two different grocery store chains in Tahoe City, CA did not carry Pepperidge Farms bread...thankfully, Safeway carried Kings Hawaiian bread!  I almost packed a package of Kings Hawaiian Hamburger Rolls just in case, I think I will next time.
Title: Re: Living with Food Allergies, 2013 and on
Post by: GoingNuts on October 26, 2015, 06:56:40 PM
That moment when you are cleaning up in another room, and you hear the following Jeopardy question:
"To treat anaphylaxis, you inject an Epipen in this part of the body."
"What is a thigh, Alex". 
Title: Re: Living with Food Allergies, 2013 and on
Post by: CMdeux on October 26, 2015, 06:58:27 PM
That is AWESOME, GN.  Wow.



Title: Re: Living with Food Allergies, 2013 and on
Post by: Macabre on October 26, 2015, 10:06:36 PM
:thumbsup:
Title: Re: Living with Food Allergies, 2013 and on
Post by: poppie on October 27, 2015, 06:58:34 PM
Nice thread....although I have health issues, it is only really this last year that things have become really difficult with regard to allergies. I am Gluten, Dairy and recently Sulfite intolerant, and I am currently experiencing lots of new food allergies popping up.  I have hives on my forehead, they come and go and at this point it is hard to know what the cause is, its tricky, I am keeping a food diary, and doing the best I can, I write everything down.  What I have noticed is that anything that I eat a lot of at some point my body decides it does not like, a good example is chickpeas, yogurt and recently coconut water, from a fresh coconut!!! I plod on hoping to see light at the end of the tunnel.  The skin on my face always feels dry..But, the very worse thing for me is that if I eat anything that has sulfites in I  fall into a deep sleep, almost immediately, it is frightening...I actually fell asleep recently with a sweet still in my mouth, that is how quick it happens, this frightens me a lot. ~)
Title: Re: Living with Food Allergies, 2013 and on
Post by: hezzier on October 31, 2015, 07:04:07 PM
Good news: 5th grade did not do a Halloween party!  No food!  They did work on a special project...3D Haunted Houses. 

One can hope the next party will be similar.

Bad News:  DS's teacher has taken an indefinite leave of absence and there is now a long term sub so need to go have a meeting with her.
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on October 31, 2015, 09:21:33 PM
I hope everyone is having a safe Hallowe'en this year.  Despite our very low number of trick-or-treaters, I've had multiple comments on our Teal Pumpkin, Teal Pumpkin Project poster (including some parents who wanted to know the website to get one for next year), and several very happy kids to hear we had Play-Doh (contains wheat), glow sticks, and tattoos for them.  I had some extra special wheat-free treats for kids with wheat allergy but so far nobody has mentioned it. 

It's been a pretty good Hallowe'en at our house.  Only 12 kids so far, but all of them were happy and smiling.  One even did a happy dance when she got her Play-Doh. Oh, and both our neighbourhood and town Facebook pages posted about the Teal Pumpkin Project and only had positive and supportive comments.  (I know... zero negative comments... I better not curse it.)

All kids enjoy non-food treats. 
Title: Re: Living with Food Allergies, 2013 and on
Post by: Macabre on November 06, 2015, 05:52:03 AM
I had this thought when reading further about a food allergy death where the person who died had communicated her allergy to the person taking her food order. I took this out of that thread where I was about to post this.

Horribly tragic. :'(

I compare telling someone that you have a food allergy "loudly" to visiting another country where your language, say English, is not spoken. You try to communicate, but no matter how loudly you speak and they can't really understand you well. They've picked up a few English words here and there, but there is no fluency. So there's no way to fully understand


I don't know how full of an analogy this is, because you do have to use your language to specifically  ask questions about potential cross contact. But the idea of saying something loudly in a foreign language doesn't mean it will get interpreted correctly.
Title: Re: Living with Food Allergies, 2013 and on
Post by: GoingNuts on November 06, 2015, 06:58:24 AM
Sadly, I think it's a perfect analogy.  Things are definitely improving here, but when I think of all the blank stares we received when DS was younger, and all the places we walked out of, it's mind boggling.

We were reminded of it this summer in Poland.  We had our chef cards printed in Polish, and my coworker reviewed them for accuracy of translation, so I know they were correct.  But everywhere we went, that blank stare.  They had no idea what we were talking about.
Title: Re: Living with Food Allergies, 2013 and on
Post by: rebekahc on November 06, 2015, 08:12:56 AM
I just can't reconcile someone being "meticulous" about her allergies yet ordering a smoothie.  Telling others about your allergy is not enough - you still have the responsibility to make safe choices.  That's like saying someone always wears their seatbelt so that makes it okay to ignore the RR crossing and pull in front of a train.
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on November 06, 2015, 08:27:36 AM
Rebekah, that is exactly it. WE have to do the research. Alas, we cannot rely on others to decide what is safe or not. Or where that level of acceptable risk is.

And since Disney is always touted (even by me) as allergy Mecca, you still have to be on the ball there. Just not as much. But you always have to be thinking of risk whenever you put anything in your mouth. It sucks. But that is reality.
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on November 06, 2015, 08:39:05 AM
Sorry, I must be in rant mode this morning. My latest post in the peanut allergy thread has me riled up. I think people developing aids for people with food allergies need to do more research into food allergies before going public with their ideas. Or maybe that information isn't so easy to find? (FARE, Food Allergy Canada, Google) Or is the stigma/myth of food allergy as a 'sensitivity' or 'choice' still wide-spread?

Sorry, my brain gets going on these topics and consume way too much brain power some days.
Title: Re: Living with Food Allergies, 2013 and on
Post by: rebekahc on November 06, 2015, 08:43:48 AM
I was giving some slack to that poster since he's young (presumably, as an undergrad) and in SE Asia - was just kind of happy FA (and specifically PA) seems to be gaining attention there.
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on November 06, 2015, 09:53:23 AM
I don't see his/her location mentioned anywhere. But I agree that any awareness in that region is a good thing, but misinformation anywhere isn't. Didn't Mac or hk have some good info on allergy R&D in that region?
Title: Re: Living with Food Allergies, 2013 and on
Post by: rebekahc on November 06, 2015, 10:25:52 AM
I don't see his/her location mentioned anywhere. But I agree that any awareness in that region is a good thing, but misinformation anywhere isn't. Didn't Mac or hk have some good info on allergy R&D in that region?

It wasn't, but his location had triggered our spam filter and I had to approve his registration - I was just explaining part of my reasoning for not jumping on it like I normally would.
Title: Re: Living with Food Allergies, 2013 and on
Post by: CMdeux on November 06, 2015, 10:39:09 AM
spacecanada, I believe that was another member who has family in the region, and had attended a conference in Singapore recently, in fact.

Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on November 06, 2015, 02:13:28 PM
That is who I was thinking of, yes. I have trouble keeping track of who is who on these boards since I don't know anyone in person.
Title: Re: Living with Food Allergies, 2013 and on
Post by: hezzier on November 08, 2015, 04:33:51 PM
DS got to pick out cupcakes yesterday at a NUT-FREE bakery!  And it's only 30 minutes from us so we can go again sometime.  I might even splurge on his birthday and get a cake from there...she was on Cake Wars.
Title: Re: Living with Food Allergies, 2013 and on
Post by: Macabre on November 08, 2015, 06:24:02 PM
Wow!  How cool is that!!
Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on November 09, 2015, 01:28:23 PM
Awesome!
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on November 11, 2015, 02:51:51 PM
When you see someone post in your small business group that they operate an allergy friendly bakery out of their home, but all your thoughts are highly critical because it doesn't seem possible to make everything she does free from all cross contamination for the allergens she lists free from, considering some of the ingepredients she lists.  I haven't got the nerve to ask her about it. Yet.  I don't want to seem crass or rude, but helpful... Because a truly allergy friendly bakery would be nice.  Though I still would have a hard time trusting it.
Title: Re: Living with Food Allergies, 2013 and on
Post by: GoingNuts on November 12, 2015, 06:33:13 AM
Ay yi yi - what are you reacting to?
Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on November 12, 2015, 07:37:35 AM
 :-[
Title: Re: Living with Food Allergies, 2013 and on
Post by: CMdeux on November 12, 2015, 09:28:25 AM

Mac, hope that you get this one sorted PRONTO.  No bueno.   :grouphug:





Title: Re: Living with Food Allergies, 2013 and on
Post by: starlight on November 12, 2015, 10:21:00 AM
I think it was shrimp in my Cobb salad--yesterday. Delayed. GI, very rapid heart rate. Itchy skin.


Sesame crouton contamination maybe? Either way,  :grouphug: :-[
Title: Re: Living with Food Allergies, 2013 and on
Post by: Macabre on November 13, 2015, 09:48:14 PM
I will also add about having allergies at the bottom, it's a matter of safety for others, though we are all of course responsible for checking out the safety of foods ourselves. I can say we use certain products and folks can see what I deal with. For example, we don't deal with TNA, so when I say we use a product, folks here know that it's not because we think it's safe for TNA.
Title: Re: Living with Food Allergies, 2013 and on
Post by: rebekahc on November 14, 2015, 01:08:02 PM
Mac, I hope you're having no lingering symptoms this weekend from your reactions!  I also hope your meeting goes well on Monday and you're able to narrow down the source(s) so you can be safe at work.  :grouphug:
Title: Re: Living with Food Allergies, 2013 and on
Post by: CMdeux on November 14, 2015, 02:58:46 PM

Random FA thought for the day:

Catering and student food services aren't necessarily the same staffing or systems-- or prep spaces-- in college and university settings.    Explaining this to others has occasionally proven maddening.  So no-- DD and I will not be trusting that particular catered luncheon, no matter how often they say that they've "checked" on things.  Nope.  No way.    They can be peeved that I won't trust them all they like.  But I don't.   :dunce:
Title: Re: Living with Food Allergies, 2013 and on
Post by: hezzier on November 17, 2015, 06:54:19 PM
DS's symptoms for egg have always been mild and was having cakes etc no problem so allergist had us start with french toast which was fine so she gave us the go ahead at our last appt to try well cooked scrambled egg...we started with one bite, the next time he had 3 bites, and the other days ate the equivalent of 1/2 an egg.  So the allergist declared him no longer allergic to egg today...she did warn us of that he could still react to raw egg.
Title: Re: Living with Food Allergies, 2013 and on
Post by: GoingNuts on November 17, 2015, 07:53:21 PM
 :happydance: Hezz!
Title: Re: Living with Food Allergies, 2013 and on
Post by: CMdeux on November 17, 2015, 09:05:41 PM
Hey, that is AWESOME!   :coolbeans:
Title: Re: Living with Food Allergies, 2013 and on
Post by: Macabre on November 17, 2015, 10:36:47 PM
:thumbsup:
Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on November 18, 2015, 06:48:47 AM
That's awesome!  Congrats to your DS and family!
Title: Re: Living with Food Allergies, 2013 and on
Post by: MaryM on November 18, 2015, 06:54:55 AM
Great news! :thumbsup:
Title: Re: Living with Food Allergies, 2013 and on
Post by: rebekahc on November 18, 2015, 07:45:25 AM
Great news, Hezz!  Congrats to DS!!  ;D
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on November 18, 2015, 02:31:58 PM
Congratulations, Hezzier!!

I am on dose four of my allergy shots.  Today's shot resulted in swelling, a runny nose, coughing, and additional observation. Blah.  Next week is a pre-dose of antihistamine and a lower dose on the shot. Last week had reactions too, but not enough to affect today's dosing amount. If there are any symptoms next week we have to go to a lower dose again.  This could be a very long process.
Title: Re: Living with Food Allergies, 2013 and on
Post by: CMdeux on November 18, 2015, 03:27:40 PM
:console: sc. 
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on November 19, 2015, 07:57:00 AM
The redness got up to 53mm diameter by the time I went to bed, with swelling over my whole upper arm, but has gone down to closer to 30 with about half as much swelling by morning. (That was with taking antihistamines as soon as I got home from the clinic.) Acceptable limit was 15 and minimal swelling.  More antihistamines today, plus Benadryl cream and cold packs. At least it isn't itchy today.  And I work from home so I can wear pyjamas, snuggle baby foster kittens, and take naps to recover. I am surprised how (relatively) mild symptoms really wiped me out yesterday. I am still feeling it today.
Title: Re: Living with Food Allergies, 2013 and on
Post by: Linden on November 20, 2015, 02:23:22 PM
One of those you know you have allergies when moments.  I casually mentioned to DS' older brother that DS' class was gathering nuts from the ground as a learning activity, but nuts we know are safe for DS to be around.  He got really mad and shouted, "They were doing what???  Scott Sicherer would not approve!!!"  We don't even know Sicherer by the way; we never even went to Mount Sinai. 
Title: Re: Living with Food Allergies, 2013 and on
Post by: Macabre on November 21, 2015, 11:35:43 AM
:)
Title: Re: Living with Food Allergies, 2013 and on
Post by: GoingNuts on January 28, 2016, 06:17:21 AM
YEsterday on the way to work I heard the morning DJ announce an upcoming song by a new group called The Sufferers.  The title of the song was "Peanuts".  And I thought to myself, "What is this song going to be about - death?".   :misspeak:

It was nothing of the sort, and I have no idea what the title of the song referred to, since it was about a relationship.  But of course death was where my mind went first.  ~)  :P

Title: Re: Living with Food Allergies, 2013 and on
Post by: CMdeux on February 02, 2016, 12:49:17 PM
Okay, when I list all of the ways that food allergies cause  little moments of cognitive dissonance, and thoughts of "Wow, that's an entirely new WAY in which LTFA completely SUCK..."

Seafood appears neuroprotective in APOE4 carriers


Great-- so those who are at the highest risk of Alzheimer's (and probably other CNS neurodegenerative disorders) can do something about it !  Yay!  Eat more seafood!


Oh.  Wait.



nevermind


 :tongue:
Title: Re: Living with Food Allergies, 2013 and on
Post by: Macabre on February 02, 2016, 03:24:48 PM
Ugh. As a daughter of one who had Alzheimer's and one who has been dx with Alzheimer's but is probably just dementia, this is grrrrrrr.

That said, if there is something promising out there for others, COOL. 
Title: Re: Living with Food Allergies, 2013 and on
Post by: SilverLining on February 03, 2016, 11:44:56 AM
Okay, when I list all of the ways that food allergies cause  little moments of cognitive dissonance, and thoughts of "Wow, that's an entirely new WAY in which LTFA completely SUCK..."

Seafood appears neuroprotective in APOE4 carriers


Great-- so those who are at the highest risk of Alzheimer's (and probably other CNS neurodegenerative disorders) can do something about it !  Yay!  Eat more seafood!


Oh.  Wait.



nevermind


 :tongue:


The article won't open for me....but just wanted to say

My dad always called fish "brain food". Guess he was right all along.
Title: Re: Living with Food Allergies, 2013 and on
Post by: starlight on February 06, 2016, 11:40:51 AM
Had a dream last night that involved a vending machine with a 'shower' mode. that you could push the button and the bottom catch tray would get hosed down before you buy something. Which would only occur to the sleeping minds of the food allergic and possibly the OCD-with-focus-on-germs/cleanliness.

Title: Re: Living with Food Allergies, 2013 and on
Post by: GoingNuts on February 06, 2016, 12:00:58 PM
 ;D
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on February 06, 2016, 05:32:33 PM
I saw a No Nuttin (top-11 free) granola bar in a vending machine at a rec centre near my new house. Does that come close?
Title: Re: Living with Food Allergies, 2013 and on
Post by: hezzier on February 10, 2016, 06:12:58 PM
Room parent finally sent out the food list for the V-day party at school on Friday.  She does remind everyone that there are allergies in the classroom so "as always nothing homemade".  She is asking parents to sign up to bring: fruit platter, veggie platter, fruit/veggie dip, cupcakes, cookies, water and juice.  Then says that these are just suggestions and if there is something else that you want to bring to let her know, so we have now added popcorn as well as the great response of..._______ and I will make rice krispie treats.

This just still continues to blow my mind. 

These kids have the late lunch period so will literally have just finished their lunches prior to this party.

We are skipping school for an out of town swim meet anyway, but in a school with a "wellness" policy that used to be good, this is a joke.  I think I will print out the emails from this party and the X-mas party and send them to the nurse because she does actually try.
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on February 19, 2016, 04:16:16 PM
I was recently hired as a spring break camp leader for a local rec centre.  I had to pause whilst reading the employee handbook and share that they require 'Anaphylaxis Emergency Care' and 'Asthma Emergency Care' forms to be attached to registration forms, as applicable.  :thumbs: 

Where I used to live, no matter how much I insisted on these forms, parents and other staff looked like I was part alien for asking for such documents.  Despite insistence, I was only ever able to get one from a parent (of at least 30 kids who should have had them).  It is really nice to see them part of the regular registration package here. 
Title: Re: Living with Food Allergies, 2013 and on
Post by: CMdeux on February 19, 2016, 05:07:25 PM
 :thumbsup:  That's terrific!!
Title: Re: Living with Food Allergies, 2013 and on
Post by: Macabre on February 19, 2016, 06:10:14 PM
You've apparently moved to the right place!
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on February 24, 2016, 04:21:40 PM
Mystery hives, itchy redness, and swelling three days in a row on the same part of my arm after being in the kitchen. Very unnerving. It is my upper arm, and we suspect contact reaction, but from what we don't know. Sigh.

I guess I am skipping my allergy shot today and going tomorrow.
Title: Re: Living with Food Allergies, 2013 and on
Post by: MaryM on March 02, 2016, 08:11:40 PM
Rough, emotional night on the food allergy front.  Tech dinners for the show DD is in are in full swing.  Tonight was baked ziti, the night before Hoagies and on Monday, pizza.  Each night DD tried to sit as far away from everyone as possible.  She is nervous, I understand but I know she is ok. She is not sitting with toddlers, they are almost all older than she is.  I did manage to get her to sit with the other kids - she left one seat in between.  Thats ok, at least she can be social.  I got her a napkin, out of the package, not off of the buffet table.  She refused to use it bc it might not be safe  :'(  I ended up going into the teachers lounge and the assistant director asked if i was ok and I had an allergy, stress cry...then I was ok until I heard that tomorrow they are having Chick-Fil-A and a sweet HS student told the ensemble kids she was going to make cake pops for the entire cast.   I got up to go to the bathroom, trying not to cry again.  One of the middle school kids was coming out as I was going in.  She must have noticed bc a few minutes later the cake pop girl came in.  She was so sweet, offered me a hug.  I told her that DD gets stressed at the dinners and that its hard as a parent to watch your kid not be able to have what everyone else is having.  I am emotionally spent.  WE live in a happy bubble at the elementary school....I felt like we were back in preschool with all the desserts and food stuff.  Tomorrow, DD and I are going to either eat together in the teacher's lounge or go out during the dinner.  She complained that she should be allowed to stress around milk if I get that way around peanut - I guess except she is going to do a pizza challenge in June and my allergies got worse as I got older.  I am a rambling mess.  A glass of wine, a little bite to eat and I am going to put this day to bed.

Oh and the other Jane is allergic to peanuts but has no Epi-Pen.  She swelled up once....OMG....I told her mom about how my allergies got worse and that she NEEDS and Epi.  Deaf ears.....annoying too - I worry for that child.  It was her bday - mom brought a bakery cake and told me the warnings that the bread served may contain peanuts, tree nuts, milk etc was just generic...
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on March 02, 2016, 08:32:59 PM
Oh, Mary!  :grouphug:  The food-social connection really does get worse in adulthood.  The rate of people with readily accessible epinephrine (on their person) is disturbingly low too.  It sucks.   :'(

Your post brought tears to my eyes too,   :console:
Title: Re: Living with Food Allergies, 2013 and on
Post by: MaryM on March 02, 2016, 09:06:30 PM
DD and I talked while she was lying in bed about the food-social thing.  I told her I would never knowingly ask her to do something that wasn't safe and that even if you have to bring your own food you can still be social.  I told her we always have our Epis bc they are our friend, even if it is scary and might hurt.  I'm also reinforced our rule of no label, no eat by telling her that I didn't have any baked ziti bc even thoug there was an ingredient list a parent told me she added sauce and couldn't remember what kind.
Title: Re: Living with Food Allergies, 2013 and on
Post by: Macabre on March 02, 2016, 09:59:33 PM
Oh Mary :heart: yeah, we've seen so much more food in HS than MS. But the place where we did encounter it there was theatre. And in HS, food around theatre, too. One director of straight plays always has food--but I always coordinate it. And for musicals I've always been the one to coordinate the food. We'll see what happens with this last musical. The director is the straight play director, so I imagine it will be me.

It's the only way I have found to control the stress around all the food. It's become a lot more stressful to coordinate since working, but still it's better than not being able to control it.


It is so tough-- and dealing with multiple food allergies just compounds all the stress. I'm sorry. :console:
Title: Re: Living with Food Allergies, 2013 and on
Post by: MaryM on March 03, 2016, 05:15:58 AM
The director did not want to have elaborate tech dinners this year but the parents had a hissy fit.  It would be easier if this were our community and I could have been more involved.  It's almost over.  Just sad to see DD's anxiety.

Edited to add that these parents must be the cupcake queens from years ago.  The ones who made your now HS kids feel badly when they insisted on bringing in cupcakes just because...- 2 sheet cakes coming in for tech dinner tonight....
Title: Re: Living with Food Allergies, 2013 and on
Post by: PCat on March 03, 2016, 07:46:42 AM
 :'(  so sorry Mary!   :grouphug: for your DD too!

DD has been there.  And I echo, food and social situations become more frequent and more complex as our kiddos get older.  We are not in theater but deal with food with her sports teams and their banquets, NHS and Student Council events, etc...

Your DD is young and what I can tell you is as she grows up, small steps, successful evenings and events, lower anxiety (it never disappears completely) she will cope better, she will feel more empowered.  All this at her own pace, each kiddo is ready at different times, no real time table. 

You are a great Mom and your DD knows you have her back!  And over time, the tools you give her will help her navigate and own food situations.  Your DD will have better experiences.

It is really awesome when my DD presents a situation with a solution already figured out!  And although I know she is capable, her homework load is huge so sometimes an event will come up and I will right away offer to do the research and find a solution knowing she does not have the time or that she is already stressed with other things.

Because these are not your DD's classmates, it is a bit different, but when your DD is with her classmates, you may be surprised to find more inclusion or at least an effort.  I hope you do.  Last year's softball banquet was being planned by moms of two seniors (DD was a sophomore) and they contacted me right away to ask how to make it safe for DD.  Meanwhile the coach emailed me too asking the same thing.  The coach bought safe Lofthouse Cookies and Nut Free cupcakes and ordered a smaller sheet cake with the team message.  The safe snacks became part of the dessert table and DD was asked to serve herself first.  For the buffet meal, the Mom's had the restaurant contact me, we came up with modifications for DD and the Mom's were very careful to keep DD's portions set aside away from the buffet and they made a plate for DD!  I sat back and enjoyed myself.

My DD is now 16......and licensed.....and most recently drove herself to the mall, met a group of friends, shopped, went out to dinner at the Cheesecake Factory, and drove herself home!  Like it was nothing!  That is the best!  And when she is eating out with friends, she likes to text me photos of her dinner plate bragging at the yummy food she has to eat!  That makes me laugh and makes me glad she wants to share this with me.

Of course now we face Prom (I'll have to share Promposal with allergies story someday soon), boys (kissing and whatever), and I want to go no run back to those days of preschool and cupcake moms instead of the conversations we have now  :hiding:)

Yes, DD has food anxiety but she is less fearful.  During a college tour this summer she hit it off really well with our tour guide and when asked what she might be worried about going off to college, she said eating safely in a college cafeteria.  That tour guide took her to the cafeteria and showed her how they deal with allergies and had a kitchen person speak to her!  She was able to vocalize her anxiety to a stranger!  And that stranger gave her some great information!



On another note, I went shopping and out to lunch with a friend for her birthday yesterday.  We had a great time!  She is allergic to gluten (she is the one I safely bake for).  She ordered a safe meal, the same as she always orders when we eat there, but she did not stress gluten allergy to her waiter.  She stared having "glass in her eyes" feeling as we left the restaurant and thought it was something in the air (perfumes can do this to her).  A short drive down the road and I was dangerously crossing 3 lanes of busy traffic to hit a pharmacy across the road.  I did not like her cough, knew she was in trouble, Benedryl, water, not much relief until I got her home and she took another dose.  She had run out of Benedryl in her purse, she has an epi pen but has never used it for gluten.  The second dose calmed that nasty cough and her breathing calmed.  Just her glassy eye and the start of her expected bad stomach. 

A lesson when I got home for DD, yes you can order safely on the menu but never, ever, ever avoid saying "allergy" to a waitperson or food server!  Still teaching, supporting, and advocating for and with my DD.  A couple years ago, she asked me if when she is at college can she still text me anytime about food?  That would be a resounding YES!  Anytime!  I have her back!

Title: Re: Living with Food Allergies, 2013 and on
Post by: CMdeux on March 03, 2016, 10:32:53 AM
EVERYTHING that P-cat said.  EVERYTHING.


My DD does not enjoy driving-- but it was essential.  Necessary, also, for her to have her own car.  She needs that particular locus of control. 


Quote
must be the cupcake queens from years ago

This is my hypothesis, yes.   :-/

And theater people never seem to truly grow out of the food thing.  Sorry.  DD has dealt with it repeatedly even in college, and MAN, does that get old-old-old.

She has great support from her techie friends, who are just as tight on a production as the ensemble tends to be-- but the management?  Not so much, often.



Title: Re: Living with Food Allergies, 2013 and on
Post by: MaryM on March 03, 2016, 10:48:26 AM
Thanks ladies.  Pcat -I am glad your friend was ok.

Had a chat with DD's teacher - she did't do her homework last night.  She forgot her book and I was supposed to print the page  and I forgot bc I was such a mess after the dinner.  Sigh.  Teacher says academically she is fine but the balancing is getting hard.  I feel like a terrible mother.  I am so guilty - I get to the school at 2:40 and math ends at 2:45 so she was missing the end of math - I thought they had transition time.  No one told me.  I told the teacher I thought she handled it pretty well up until the last few weeks and its more stressful.  I also told her that she should have told me if there were days when she needed DD to stay for assessments - that school always comes first.  I guess we both messed up.  DD told her teacher she didn't have to do her homework bc of theater?  I think she meant last night but we both forgot about it this morning.  She forgot to bring her folder to school a few days so she had late assignments.  Feeling very low and sad and nervous.   DH tells me not to worry about it.  I also just told the teacher that she is missing a week in April.  I know when DD looks back on this year it will be amazing and she won't remember the balancing issues/forgotten homework- she will remember her first lead role in a big show and an amazing family vacation where she can eat out safely.

Title: Re: Living with Food Allergies, 2013 and on
Post by: CMdeux on March 03, 2016, 11:01:38 AM
Yes, she will, Mary.  You're doing just fine balancing it all.  I'm just sorry that the FA piece is making things so much more stressful than they'd otherwise be. 
Title: Re: Living with Food Allergies, 2013 and on
Post by: MaryM on March 03, 2016, 11:09:46 AM
Thanks CM :)

DD's teacher is allergic to nickel and has a very limited diet.  She talks to her class about it sometimes.  She said she has not seen any of the food anxiety I was telling her about.  We chatted for a bit this morning during picture day.  I told her as much as I could about last night but then started to feel weepy and so I told her I couldn't talk about it anymore.  Made me happy to hear she isn't seeing that at school. 
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on March 03, 2016, 11:25:19 AM
Keep this in mind... you won't always be there to control the food in every situation as your children grow up.  There will ALWAYS be people bringing food in places and social events will almost always involve foods you cannot control.  It's part of our food-centred culture. :(

Move to a new house: all the neighbours try to invite you over for lunch.  It is uncomfortable because even though to mention allergies and they do their best to accommodate, you still have to bring your own food.  And when you walk into their house and see a toddler and an open jar of peanut butter on the counter (which you then ask to be put away, but you know the toddler is covered in it), you freeze up and don't want to touch anything or even eat what you brought, making the whole scenario even more awkward.

Start a new job or have a business meeting: you're probably going out to lunch with them, and you don't always get advance notice to pick a safe place to go or pack a safe meal to bring.  But to build those relations, you have to go... and possibly not eat anything because you just aren't sure about this new restaurant.  You're lucky if your emergency stashed granola bar is still in your car.

Go over to visit friends: they'll probably have food out.  Granted, friends typically catch on pretty quickly and want to have you over.  But still.  Food.  (We did have one set of friends at our old place that, even without allergies, realized food wasn't necessary long ago.)

Church: every social event has food: pancake breakfasts, potluck lunches, picnics, etc. 

Even at a Girl Guide camp the head leader, after I thought I had a good conversation about why I couldn't attend events where the girls/parents brought in food, added a potluck to the event list and parents still brought in things from the allergen list.  The event 'always had food' and she wasn't willing to change it.  Of course, I chose to be absent, but another leader told me it would have been unsafe for me to be there with nuts and potato crisps (both on the allergen list!).  Same for group camps, when the caterer says they understand allergies and answer your questions correctly but you get there and you find they don't, you're stuck without food for a weekend, or eating plain rice and emergency stashed granola bars and apples for three meals a day -- or you go home.

Navigating these situations with confidence and without fear is HARD.  Anticipating plan B for every food situation is HARD.  I am one who will avoid the situation with food and opt for social isolation as a result.  I have been let down or put in danger too many times.  It's my reality. 

All the parents on this forum are doing such a great job of helping their children navigating this world of food and becoming confident adults with their allergies.  Some level of anxiety is necessary to keep yourself safe, but it's challenging to know where to draw that line.  I hope your children learn to cope with it better than I do.  I must say I am a bit jealous that your kids have so much support.  It's good though.  I LOVE reading stories of how wonderful your kids handle life.  Keep up the awesome parenting!

My mother is one of those 'typical' adults with food allergies who isn't super careful, eats food prepared by others all the time just trusting they did it right, and doesn't always have her EpiPens, though she is getting better with my nagging.  She has allergic reactions all the time and treats them with Benadryl and casual attitude.  My grandparents were the same way and figured allergic reactions were a normal part of life, vs. hypervigilent avoidance.  So the life advice I get isn't always practical: 'tell them what your allergies are and trust that they cooked according to your instructions'  Yeah.... if only it were that simple.  I have a tough enough time with that myself, yet alone someone without allergies.

For instance, I just set myself apart from my new coworkers already... I was hired for a spring break position and the head leader told everyone to go out for supper together and get to know each other better.  I froze up and panicked and went home instead, citing allergies and being uncomfortable and scared about going out to eat in a town I've just moved to, to a restaurant I know nothing about.  (They were mentioning all the places that were unsafe: fish and chips, Chinese, a fancy bakery, etc.) I was very hungry and didn't want to sit and eat nothing.  I didn't have any food stashed in the car.  They all went out anyway, without me.

Sorry, bad allergy day today I guess.  I'm just so fed up with food being everywhere and part of everything.  I know I isolate myself.  My psychologist told me it's necessary in many cases to do so to keep myself safe and he, too, admitted that food is an unnecessary element in many situations.  (Social isolation and avoidance are part of PTSD, and mine has escalated beyond reasonable levels as a result, but it's not something we can safely work towards bringing back to a normal level because of the potential for actual threat to life.  Whereas something like hearing sirens doesn't actually pose a threat to life, it can be desensitized.)  I just wish more people really understood food allergies - and non-first responder or military PTSD too.  And I wish it were easier to get back into social situations after so much hurt.

Not looking for consolation, just needed to vent, I guess.  I'm feeling extra isolated right now because of the move to a new part of the country and having none of my friends here.
Title: Re: Living with Food Allergies, 2013 and on
Post by: MaryM on March 03, 2016, 11:46:40 AM
space - you are amazing.  I am sorry you are feeling so isolated now.  Moving is hard...food allergies make it harder.  I remember how isolated I felt when we moved from one town to the next one over.  I have sat at restaurants and not eaten bc I was uncomfortable with how my allergy request was being handled.  It sucks plain and simple.  Actually one of my bridesmaids was pretty passive aggressive and picked a restaurant for my "bachelorette" dinner that I was uncomfortable eating at.  I just remembered that.  Hang in there space.

Title: Re: Living with Food Allergies, 2013 and on
Post by: CMdeux on March 03, 2016, 12:04:08 PM
Space, honestly-- I haven't had a great chance to say this to you-- but YOU have been a tremendous inspiration as my DD is dealing with her own PTSD. 

The food allergy bit of it is SO hard-- and finding a therapist that understands how slow your progress is, and how YOUR normal/healthy is never ever going to be the same as what "normative" looks like for most people.... sometimes that seems impossible. 

I admire your strength SO much.   :heart: 

This-- so much:

Quote
Navigating these situations with confidence and without fear is HARD.  Anticipating plan B for every food situation is HARD.  I am one who will avoid the situation with food and opt for social isolation as a result.  I have been let down or put in danger too many times.  It's my reality.


So-- great story, this-- last night I took DD and her boyfriend out for dinner at a local diner which is mostly nut-free, and where DD can eat almost anything on the menu (just not the desserts, which-- yeah, you all get it).  Her meal came with dessert (largely because her favorite waitress was there, and she is more like a big sister than an acquaintance-- she was grilling the new guy).  Naturally, DD couldn't eat it, but she gave it to her BF (who had ordered HIS meal to be "safe" for DD, by omitting eggy condiments)-- chocolate mousse, made on site. 

Her surrogate sister topped it with a HUGE pile of whipped cream straight from the can-- in full view of DD-- which meant that the two of them could discreetly SHARE dessert.  In a restaurant.  DD picked the untouched, pristine whipped cream off the top with her fork, and once she'd done that for a few bites without touching the mousse under it, he ate the rest. 

It was kind of an amazing moment-- and one made possible by people who love and care about her, and are respectful of her need to feel SAFE.    It was the exact opposite of the passive aggressive moves that some people have laid on her (Mary, that is just AWFUL, honestly). 
Title: Re: Living with Food Allergies, 2013 and on
Post by: MaryM on March 03, 2016, 12:11:39 PM
CM, last nights sounds wonderful!  Those are the people who make this road easier :)  So happy for your DD and her BF.
Side note, I am no longer friends with that Bridesmaid - did not really put it all together until well after the wedding....
Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on March 09, 2016, 06:27:01 AM
First email allergy warning for tree pollen this morning! 

What does this have to do with food allergies? 

Need to cut back on certain fruits in my meal planning, DD's school lunches and snacks and cooking for the next 3 months.  And need to finish the turkey dinner meatloaf that is full of apples soon.

Spring has sprung!
Title: Re: Living with Food Allergies, 2013 and on
Post by: MaryM on March 09, 2016, 08:18:49 AM
UGH - I Hate these CYA statements.  DD has a cold and has 3 shows starting tomorrow.  I really want to find a decongestant to help her otherwise she may not be able to perform....Triaminic could not guarantee that somehow milk, egg, peanut or tree nuts did not get into their products...really. I left a message for the nurse to call me back.  I am so upset.  2.5 months of rehearsal can all go down the drain.  She is home in my bed with the humidifier going and her saline spray.  She wants to be at school and isn't feeling awful but her voice is raspy and she is sniffling a lot.  Let s hope the rest today helps.
Title: Re: Living with Food Allergies, 2013 and on
Post by: hezzier on March 10, 2016, 09:13:01 AM
Well, here's a positive to TNA...don't have to worry about getting Salmonella due to pistachio nuts

http://www.kmov.com/story/31435445/voluntary-pistachio-recall-due-to-salmonella-concern
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on March 26, 2016, 09:22:55 PM
I've been demoted again on the allergy shot schedule.  Ugh.  It's sad when what I thought was an epic fail three months ago is now a cheerful pass (though still an epic fail, just not anaphylaxis).  Injection site swelled up bigger than a toonie today (fail) and I had a very scratchy and lumpy-feeling throat (serious fail, though it didn't look swollen to the doctor), but this dose gave me scary anaphylaxis three weeks ago, so it's an improvement.  We're doing twice as many increments as prescribed and today we've added that I need at least two injections at each dose until I have absolutely no localized reaction before moving up.  I can tell the doctors are uncomfortable when they see me because of my severe reaction history.  It makes me uncomfortable too.  I cannot wait to see an allergist here and make some sense of this or at least get a better prescribed plan so the local doctors don't have to keep revising it because I'm so sensitive.  Fingers crossed the current plan actually works -- for a while, anyway.

On the up-side, because there always is one, I make myself Screamin Brothers ice cream sundaes every day I get an allergy shot.  Hey, whatever makes the day better.   ;D

Another positive today: my husband is normally a snotty and itchy eye monster in spring and hasn't taken antihistamines or complained once since the big move.  Spring is in full bloom here with pollens flying everywhere.  He was taking double dose Reactine and very strong eye drops daily from spring through summer at our old address.  Fingers crossed he left whatever he was allergic to back in Alberta.
Title: Re: Living with Food Allergies, 2013 and on
Post by: LinksEtc on April 13, 2016, 09:36:45 AM
My academic dh told me that there is somebody who might want to do health research w/me ... dh doesn't even know about my researcher thread, he just wants to get his hands on some NIH $ and knows I'm kind of into health stuff ...

this will probably not go anywhere, but hey, it may be worth a try ...

hmmm ... this guy wants to know more about me ... but how do I talk about what I have done when I have no boss & w/o just shouting publicly that I am Links!

If you have any suggestions, pls pm me.

See you later.


 :heart:




Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on April 13, 2016, 10:25:00 AM
I watched the new Star Wars movie for the first time this weekend.  At the end, my husband asked me what I thought of it and this was my reply:

'I wonder what the Stormtroopers are allergic to.  It looks like they carry EpiPens on their back.'

You will never look at a Stormtroopers the same again.
Title: Re: Living with Food Allergies, 2013 and on
Post by: SilverLining on April 20, 2016, 07:23:22 AM
Not sure whether I'm venting or bragging.

Next month we have an event to attend which will require semi-formal attire. I have none. Well, I have black pants. So we went shopping. First mall I found two shirts...one was black/gray/white and exactly what I wanted...short sleeve and not tight. The second was black, long sleeve, and tight at the bottom...exact opposite of what I wanted. The first looked good, but the second looked great.

As we were on the escalator leaving with my new top we were discussing what else we need. DH asked if I was carrying my regular purse, and I reminded him of another I have. I said it's big enough for my epi-pen, but not much else. And a woman ahead of us on the escalator actually turned to look at me and rolled her eyes. The bragging part is....I refrained for pushing her down those stairs.
Title: Re: Living with Food Allergies, 2013 and on
Post by: Macabre on April 20, 2016, 07:43:40 AM
Lol.
Title: Re: Living with Food Allergies, 2013 and on
Post by: Macabre on April 20, 2016, 07:45:29 AM
The AuviQ gave me more freedom for evening bags. For a while. :-/  But yeah, I always buy evening bags with the criteria that my epinephrine will fit--and a lipstick. I have several little but long purses!  :)
Title: Re: Living with Food Allergies, 2013 and on
Post by: ajasfolks2 on April 20, 2016, 07:52:18 AM
Quote
The bragging part is....I refrained for pushing her down those stairs.

I dunno . . . I might have accidentally turned away from her, slipped, and bumped her with my purse and overly long Epipen . . .
Especially since I'm used to carrying AuviQ and not so accustomed anymore to the sticky-outy-ness of the Epipen . . . kinda like carrying a flagpole. (Or maybe broom handle, LOL).

Oops!!!!!   ;D

Title: Re: Living with Food Allergies, 2013 and on
Post by: starlight on April 20, 2016, 08:32:58 AM
I feel your pain. I bought two 'going out' purses that purposely fit the auvi-q and not epi and only got to use one of them, once. But I hear auvi is coming back? So I'm hanging onto them.  :watch:
Title: Re: Living with Food Allergies, 2013 and on
Post by: SilverLining on April 20, 2016, 08:46:45 AM
I never switched, so all my purses are long enough.

But my wallet will not fit with it. What I end up doing is carrying a bank card, $20 cash, and keys. And I guess my cell phone too, I'll have to check it fits.
Title: Re: Living with Food Allergies, 2013 and on
Post by: CMdeux on April 20, 2016, 10:37:48 AM
That's what DD usually does with formal attire, Silver.  She has a couple of bags that work-- one in silver (to match strappy sandals) and a black bag that is less flashy but does pretty much go with everything.

She joked that a grubby Eddie Bauer fanny pack probably wasn't the thing for such occasions..  :misspeak:
Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on April 20, 2016, 10:47:36 AM
Allergist this morning for DD.

Lung function - excellent and improved!

Eczema - excellent and improved!  (even though we are in the beginning of tree pollen season here)

We are going to try right now to drop Singular!  Doctor says if we notice coughing or need for inhaler in the first 5 days get right back on it.

Blood work for - melons, sunflower, egg, garlic, and total IGE today to determine other possible food challenges this summer.

On list for (hopefully summer - med group has to buy into program) component blood work for individual tree nuts except pecan.  Dr. feels component testing is necessary for her to determine if we should challenge these as DD will fail in a RAST test.

Pecan to be tested at home (was negative last blood work in 2014 with coconut and DD did and passed a coconut challenge in office).

No planned testing on peanut or sesame as those are both well over 100 and doctor says she does not expect those ever to change.  She said for DD, component testing for peanut will not change anything.

Can't wait to see the total IGE #.  That one has never been below 1100 and historically mostly up around 1500 - 1600.  This is the first time we will test it since starting allergy shots a year and a half ago.

Doctor really was impressed with how well DD is doing overall and was very happy that DD has been vigilant and had no accidental ingestion.  I think this is because she is a teen, in an at risk category.  She is also amazed how DD is doing health wise while working with animals (which she tests allergic to).

Nice to leave the office with many positives!
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on April 20, 2016, 11:16:31 AM
That all sounds like good news, PC.  Yay!

I am off to the allergist again this morning for my weekly allergy shot. At least this week I feel confident that if I mention a runny nose, mild dizziness, nausea and/or an itchy tongue it may get recorded. The doctors I saw before dismissed those symptoms as normal/mild and so I did too, but the allergist says they are reason for Epi because it is two systems reacting: skin + whatever else. Especially since I have a history of severe reactions. Problem is, now I am kind of scared to get my injection today, even more scared for the increased dose next week. I really want to avoid Epi if I can. 😁
Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on April 21, 2016, 07:15:12 AM
How did your shot go SC?  How far are you from the maximum dose?


DD had a lovely large wheal yesterday, but we expect that with her tree shot especially this time of year.

First day without Singular.  She will be on the softball field this morning for a couple hours, so out in the pollen.
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on April 21, 2016, 09:20:42 AM
The shot went well.  I had some very mild reaction symptoms (one drip of the nose, tip of my tongue went numb for a few minutes) but they all came and went so quickly the allergist wasn't too concerned about them since they didn't stick around.

I am just over 1/3 of the way to my final dose. Next week we up the dose.

Good luck with the softball outing, PC.
Title: Re: Living with Food Allergies, 2013 and on
Post by: LinksEtc on April 22, 2016, 07:47:48 AM
I'm going to indulge in one last morning of fully being Links ...

letting go of Links does seem like the right thing for me to do, but like with trying to change any habit (ex - eating better, exercising, etc.) ... you have false starts ... it can take a couple of tries ... and something can easily pull you back into old habits.

one good thing ... on Twitter at this point ... I keep seeing the same health themes/ideas being played out again & again ... new examples, but it seems like mostly the same basic stuff ... most of which, we now have in our threads here ... so yeah, that's not as interesting to me these days either.




Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on April 22, 2016, 09:45:56 AM
No test results yet...but DD came to tell me something super cool yesterday.

"Hey Mom!  Your mulching!  I can breath this year!  OK, I'm just a little stuffy, but I can breath!  And my chest doesn't hurt!"

Softball went well.

Day 2 no Singular.  (she has been taking that for 12 years!)
Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on April 25, 2016, 08:08:09 AM
 :-[

Have not heard from the allergist yet, we get test results before she does through our electronic records.

Total IGE 1316......   :-[  It's down...but not really.  After our visit last week I was so optimistic.  (and yes, I know better...but this time I really thought, maybe..)

Egg down again as are melons, sunflower and garlic up a bit.

Will have to see what allergist thinks.  She may also rethink the component testing, but I hope not.
Title: Re: Living with Food Allergies, 2013 and on
Post by: CMdeux on April 25, 2016, 11:24:37 AM
 :grouphug:

It's so hard not to hope. 

Egg being down is really a good sign, though, right? 
Title: Re: Living with Food Allergies, 2013 and on
Post by: YouKnowWho on April 25, 2016, 08:11:34 PM
We had our first visit with a new allergist today.  He used to be in practice with our other allergist, have heard good things and is about an hour closer.  I semi regretted it after 36 pages of paperwork.  But honestly overall, I am semi-optimistic?

DS1 reacted to wheat, barley and a whopper of an egg white, but yolk was negative.  Running blood tests including some immunology.  Possibly considering baked egg desensitization.  DS1 is wavering though.  I will readdress when and if it's a possibility.

DS2 reacts to peanut.  But without a true reaction all this time, we wonder.  So we are running component test.

DD reacted to several tree nuts but not to soy, sunflower or sesame.  Running bloodwork on tree nuts we could consider challenging.  He is leaving off hazelnut and macadamia.  Also running it for soy and sunflower (because allergist agreed I am on right track) and will consider challenging based on numbers.  He believes in keeping in foods that you can eat.

I am mentally exhausted.  Need to take DS1 on his own to get bloodwork done and then I will DS2 and DD to do theirs.  DS1 is terrified of needles, DS2 thinks they are cool.
Title: Re: Living with Food Allergies, 2013 and on
Post by: Macabre on April 26, 2016, 06:10:48 AM
Glad you're getting the component test done. And it sounds like you had some nice victories. 
Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on April 26, 2016, 06:34:16 AM
YKW, good luck with the blood draws!  It ill be awesome if you can shorten the allergen lists!
Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on April 29, 2016, 06:05:24 PM
Meeting DD's prom date in a short while.  My questions and info to share (allergies) are so different from what other parents meeting their child's new boyfriend need to cover. 
Title: Re: Living with Food Allergies, 2013 and on
Post by: LinksEtc on April 30, 2016, 01:46:49 PM
Ugh, it's so easy for me to fall back into Links ... ok, I think I'm done again for now ...

I'm going to leave off with a funny thing from this morning ...



I hand dd a tissue, saying "here, I think this is clean" &
dd laughs and says "What if it's SNOT?"

 :P



We both agreed that @AllergyKidsDoc might appreciate this since he does those "really bad jokes of the week" tweets ... dd likes those ... I won't bug him on Twitter, but I figured that I'd post it here.






Title: Re: Living with Food Allergies, 2013 and on
Post by: CMdeux on April 30, 2016, 07:08:06 PM
:rofl:


 :smooch:  Links. 
Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on May 01, 2016, 09:07:07 AM
 ;D
Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on May 01, 2016, 09:09:19 AM
Letter from allergists office states due to DD's high IGE total, she is still considered allergic to other tested foods even though some individual tests came down.  Continue strict avoidance.

She did decide to run a peanut component and DD is class 6 to the high risk components so certainly not a candidate for patch or any other treatments.  No surprise there.
Title: Re: Living with Food Allergies, 2013 and on
Post by: LinksEtc on May 01, 2016, 12:39:36 PM

 :smooch:  Links.




 :)    :heart:    :smooch:




Title: Re: Living with Food Allergies, 2013 and on
Post by: Macabre on May 02, 2016, 10:23:45 AM
Why would you think you're bugging him on Twitter? He would see it as engagement. That's what he wants.
Title: Re: Living with Food Allergies, 2013 and on
Post by: LinksEtc on May 02, 2016, 12:36:37 PM
Yeah, you're probably right ...


but I think it's best if I back off ... I don't know ... it felt more appropriate to post here.



 :heart:




Title: Re: Living with Food Allergies, 2013 and on
Post by: Macabre on May 04, 2016, 09:56:14 AM
So when one has a shellfish allergy and has a systemic reaction to contrast dye, one has to go to the other side of the world for a CT scan with contrast dye.

I will have an oral contrast. And I will start premedicating with pred and Benadryl twelve hours in advance. Which means I technically am supposed to have someone drive me.
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on May 04, 2016, 10:22:54 AM
There is no alternative dye, Mac? Is the reason for the CT worth the risk?  How scary!  I will be thinking of you on Friday.   :grouphug:
Title: Re: Living with Food Allergies, 2013 and on
Post by: Macabre on May 04, 2016, 10:50:53 AM
I am thinking I may reschedule to Monday if possible. Friday is not a good day for anaphylaxis.
Title: Re: Living with Food Allergies, 2013 and on
Post by: CMdeux on May 04, 2016, 10:55:18 AM
Friday is not a good day for anaphylaxis.

That sort of encapsulates what life with food allergies is actually like, doesn't it?? 

 :grouphug:


Other person says:  Hey, how about that new restaurant??

Me, thinking:  Hmm-- well, I don't have anything scheduled with anyone or anything else this afternoon... if I wound up in the hospital or even just immobilized at home, it wouldn't really impact anyone but me.... I mean, I'll just get water if they turn out to have mostly unsafe stuff on the menu...   "Sure!  Korean-SW Fusion sounds really interesting!!"


Title: Re: Living with Food Allergies, 2013 and on
Post by: YouKnowWho on May 25, 2016, 09:06:31 AM
Finally got bloodwork dine and back for the kiddos.

DS1 tests at a Class 6 for wheat, rye and barley and class 2 for egg white and yolk.  We are considering baked egg desenzitation but I want DS1 and DH to meet with allergist first to discuss really sad and benefits.

DS2 - Class 3 for peanut and component test shows he is likely to react.  Sigh.  So years of being reaction free and hopes it was false positive are out the window.  Not considering desenzitation right now due to increased environmental reactions and limited outside interactions due to homeschooling.

DD - all tree nuts, soy and sunflower.  She has been having mystery reactions for a few months and the two ingredients I questioned were soy and sunflower.  So no surprise there but still a kick in the gut.  The irony is not lost on me that she is reacting to Sunbutter and Enjoy Life products.

Off to reevaluate all the stuff in the freezer and cabinet and bring out the good old labels we used for do long. 
Title: Re: Living with Food Allergies, 2013 and on
Post by: rebekahc on May 25, 2016, 09:09:22 AM
YKW, that's a lot to take in at one time. :grouphug:
Title: Re: Living with Food Allergies, 2013 and on
Post by: hezzier on May 26, 2016, 08:51:27 AM
We have been given the go ahead to challenge sesame.  First appt is for July...excited and scared all at the same time.
Title: Re: Living with Food Allergies, 2013 and on
Post by: Macabre on May 26, 2016, 12:03:31 PM
Wow!!  That's awesome.
Title: Re: Living with Food Allergies, 2013 and on
Post by: starlight on May 29, 2016, 08:12:12 PM
When your friends are all at a birthday party at a place you're afraid to eat or drink at due to yelp reviews of their bad handling of peanut allergies, but you shower and dress anyway because it's a super popular place that you're sure 10-15 people won't be able to get into on a Sunday and they'll just move on someplace else, and they get in and decide it's super popular for a reason and that they're just going to stay there all night.

 :'(

ETA: and you asked a friend to take pics of the glassware because it's a tiki bar and she texts you to tell you she took a picture for you of the whole group with their drinks.  :'( :'(
Title: Re: Living with Food Allergies, 2013 and on
Post by: CMdeux on May 29, 2016, 09:12:31 PM
:console:  I'm so sorry, starlight. 
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on May 29, 2016, 09:53:05 PM
 :grouphug:
Title: Re: Living with Food Allergies, 2013 and on
Post by: starlight on May 29, 2016, 11:16:16 PM
They did finally move on. :happydance:  Thanks guys.  :grouphug:
Title: Re: Living with Food Allergies, 2013 and on
Post by: Macabre on May 29, 2016, 11:22:19 PM
I'm sorry starlight.

:console:


I used to go to a tiki bar dive in Hyde Park: Jimmy's. It was not wonderful. I'm hoping you didn't miss much
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on May 30, 2016, 05:24:52 PM
Since I cannot find safe brown rice flour or white rice flour in the stores, I spent my afternoon making my own: rice + Vitamix high speed blender, then sift through a very fine sieve.  It takes a while but I am hoping it will be sufficient for the recipes I want to try.

Now I am curious to find other flours that can be made this way... (I make oat flour often but haven't tried making other flours.). This could open a whole new world of recipes. 
Title: Re: Living with Food Allergies, 2013 and on
Post by: MaryM on June 01, 2016, 07:04:25 PM
I thought we were done with the whole sports/snack issue.  DD had softball practice - she has been running all day - she got home from school at 4, we let for dance at 4:15, stopped home at 5:30 for 10 minutes to grab a quick meal and ran to softball (so she is tired).  After practice they sang happy birthday to a team member and then it was announced that there were cupcakes in the dugout.  9-10 year olds.  Thank goodness I had some at home so when DD looked sad and defeated, DH reminded her that she could have one when she gets home.  She was good with that BUT I am annoyed and I am sad bc I saw her initial disappointment.  If we didn't have that to offer, I could see her melting down bc she was so tired.  Sometimes it just sucks.
Title: Re: Living with Food Allergies, 2013 and on
Post by: Macabre on June 01, 2016, 10:09:42 PM
:console:

Yes, it does suck. And we haven't found that it actually ends (said by a person whose son is about to graduate).
Title: Re: Living with Food Allergies, 2013 and on
Post by: MaryM on June 02, 2016, 07:50:32 AM
:console:

Yes, it does suck. And we haven't found that it actually ends (said by a person whose son is about to graduate).

That stinks, Mac.  You know most days we go with the flow but yesterday just rubbed me the wrong way.  Maybe its PMS.  DD was totally fine to have a cupcake at home but had I known about the darn cupcakes I could have brought one and she could have socialized with her teammates.  Her pizza challenge is 3 weeks from today.  It would be so amazing if she passed.  Trying not to get my hopes up...
Title: Re: Living with Food Allergies, 2013 and on
Post by: Macabre on June 02, 2016, 08:01:34 AM
I hope that it's a pass! 
Title: Re: Living with Food Allergies, 2013 and on
Post by: MamaBear on June 08, 2016, 01:59:50 PM
Hello! I'm happy to have found this thread and am hoping this is the correct place for my post. I have 2 children (DD and DS), DS has multiple food allergies, environmental allergies, and eczema. DD and I have OAS and outdoor allergies. DS is 14 months old and is allergic to eggs, peanuts, tree nuts, dogs, cats, and dust mites. Learning to navigate through the food allergies is overwhelming. I spent most of my morning today on the phone with food manufacturers, trying to determine which ones are safe for my little guy to eat. It is challenging to find things he likes that he can have. He recently reacted to DiGorno (sp?) frozen pizza. Come to find out it is made in shared lines with egg products. We also struggle to keep his eczema at bay. Any advice and/ or pointers is much appreciated!!
Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on June 08, 2016, 03:32:29 PM
Hi MamaBear!  Welcome!

Spend some time searching our specific forums, there is lots of info.

Ask pointed questions and we will chime in.

My DD also has multiple food allergies, environmental allergice,  OAS, eczema and asthma.  She was a mess at first way back as a toddler.  Lots of years learning, reading, and conversing with many people here. 

Now at age 16 she is fairly independent, has beautiful skin, and very well controlled asthma!

Lots of advice and pointers to share, enough to write a book!  Many others here with years of experiences and knowledge to share too!
Title: Re: Living with Food Allergies, 2013 and on
Post by: Puddles on June 08, 2016, 04:19:03 PM
Living with Food Allergies lead to wonderful (not) e-mail responses like this.


Hi XXxxx

Thank you for writing.  The recall
 
Thanks again for reaching out to us! We value your loyalty and hope you'll continue to enjoy products from <company name>.

Best regards,

XXxxxx
Consumer Relations


I had contacted them to find out if a recall affected products sold in my country. I also asked about other products which may run on the same equipment, and what other products use the contaminated flour.

Clear as mud!
Title: Re: Living with Food Allergies, 2013 and on
Post by: MamaBear on June 08, 2016, 09:19:53 PM
Thank you, PurpleCat! And, Puddles, I have been experiencing similar answers with some companies as well. Some have been very helpful and clear though. I just wish all the labeling was the same and included may contain statements across the board.
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on June 09, 2016, 02:11:10 PM
That moment when you take a bite of spicy food and panic, wondering if your burning mouth is from the spice or from allergies.  I love spicy foods, and this sense of panic is likely because my last anaphylactic food reaction started with a burning mouth (to mild food).

Also, at the grocery store today I called a major manufacturer to find out that their whole wheat flour is made on shared lines with dairy.  No precautionary label.  I am not allergic to dairy but avoid it due to severe intolerance and eczema. Scary stuff.  A reminder to email or call manufacturers every time you want to buy something new.
Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on June 17, 2016, 09:53:06 AM
Going to the grocery store this week and having to walk buy some long time favorite dependable items like Rolled Gold and Keebler. 

I know, I can look on my phone to see if the individual package is part of the recall, but I am already reading labels and grocery shopping takes long because of that.  I'd like to get in and out before lunchtime!


Title: Re: Living with Food Allergies, 2013 and on
Post by: YouKnowWho on June 28, 2016, 10:30:38 AM
DS1 successfully ate a restaurant with none of us in tow.  http://www.bluemoonpizza.com/gluten-free-full-story.html

I did eat with him last time we went, but was unable to go this time.  He was in the company of adults (one who avoids gluten because of IBS, one with Celiac) and successfully advocated for himself.  Friend secretly filmed him speaking with waitress (and both friends had a list of questions/explanations if DS1 failed to ask).

And when his change was returned, he left a hefty tip for waitress and explained to our friend, she deserves it for keeping me safe.  He also told me that he asked to order last, chose a topping that was different from that of his friends so his pizza was easier to identify. 
Title: Re: Living with Food Allergies, 2013 and on
Post by: hezzier on June 28, 2016, 03:42:01 PM
Smart thinking to order last!
Title: Re: Living with Food Allergies, 2013 and on
Post by: Macabre on June 28, 2016, 07:00:30 PM
That is awesome, YKW. On so many counts!
Title: Re: Living with Food Allergies, 2013 and on
Post by: YouKnowWho on July 01, 2016, 08:51:53 AM
So we are a month in to eliminating soy (with exception of oil and lecithin) and sunflower (with the exception of oil).  All of Em's issues with random hives, itchy ears, refusal to eat, etc have been eliminated.  Still dealing with temp related hives but that is a different issue.  I find soy is often bolded in ingredient lists but that label includes lecithin and oil, so still having to read through long lists.  Sigh.  I often wish we could move to a house that has a separate kitchen so I could bake safely for Em and DS2 without risking DS1's safety.  Allergist is advsnt about not avoiding foods they are not allergic to for risk of sensitization. 

Oddly enough, I am finding better luck in generic products from Aldi for lack of soy flour.  But we have also had to give up some favorite products that do have soy flour which has led to tears.  It was much easier dealing with adding food allergies to a non cognizant child's list than with Em.  I thought it was bad at 4, it is much worse at 6.  I will say though, she is really good at understanding every label everytime and handling refusal of foods.  But she is rather macabre on her humor and I need to work on that. 

The good, the bad and the ugly of food allergies..

Title: Re: Living with Food Allergies, 2013 and on
Post by: Macabre on July 01, 2016, 09:19:48 PM
Wow YKW what a confirmation. I forget--did you get her tested a few weeks ago when you went to the allergist (I think you went very recently)?
Title: Re: Living with Food Allergies, 2013 and on
Post by: YouKnowWho on July 02, 2016, 04:58:53 PM
Yes.  Confirmation came at end of May.  Class 2 for soy and sunflower.  Allergist wanted to eliminate all but oil and lecithin to see if we were on right track.  And it looks to be the case.

Next part of journey is to find a sub for peanut/tree nut/sun/soy butter.  She is good with peanuts but have not found a peanut butter that is tree nut safe.  She misses nut butters.

On a happier note... We are at Cheeseburger Bobbies today and DS1 had his first ever restaurant provided by (Pure Knead).  He loved it!  And was thoroughly stuffed.  Next restaurant to try is Ted's Montana Grill who also offers our favorite bread.  If you are in the Atlanta area, Pure Knead is free of top 8 and actually tastes really good!
Title: Re: Living with Food Allergies, 2013 and on
Post by: SilverLining on July 04, 2016, 11:19:03 AM
Just wanted to share some good news.

We are going to a baseball game. It's an evening game, and with traffic, we will be leaving before dinner time. I can't imagine there is anything safe for me...other than licorice. So I sent an e-mail and within minutes (literally less than 5 minutes) I received a response that I can bring my own food and drink in containers not more than 600ml. and no alcohol.

Yay! I don't have to chose between eating or breathing.
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on July 04, 2016, 12:31:17 PM
That is great news, SL.

I received a happy email from a manufacturer today, one who gave me very detailed information on what is and is not used in their dedicated facility, what is stored in a separate area of that facility in sealed boxes and never opened, and how to clearly identify items made there, as they are all SAFE for me (and anyone not allergic to wheat or oats, actually)! He went on to explain that products made in their other facilities are clearly marked and not safe for me.  I love it when companies understand.  This is a local company too.  I plan to buy and use all of their safe items when I get home from camp and support them whenever I can.  Companies that understand and respect food allergies should be rewarded (and thanked profusely for being transparent).

The company: True Grain - they make stone-milled flours (safe for me), unbleached flour (not safe, different facility), and bakery items (not safe, different facility). I would include a link but I don't know if it is allowed here. 
Title: Re: Living with Food Allergies, 2013 and on
Post by: hezzier on July 06, 2016, 05:01:45 PM
SC- you can make a new post under products and manufacturers with a link
Title: Re: Living with Food Allergies, 2013 and on
Post by: GoingNuts on July 06, 2016, 07:48:20 PM
Today I was tempted into trying a cherry, since the bag I got for DH looked so good. I wanted to see if I still have OAS.

Yes. Yes I do. Epic fail.  :disappointed:
Title: Re: Living with Food Allergies, 2013 and on
Post by: Macabre on July 06, 2016, 09:52:10 PM
Oh no. I'm sorry!
Title: Re: Living with Food Allergies, 2013 and on
Post by: GoingNuts on July 07, 2016, 06:33:58 AM
It's not tragic Mac.  It's gotten better over the years (one of the few things that is getting better as I age - my allergies aren't nearly as bad!) - I can now eat watermelon and honeydew, nectarines, plums and most raw veggies as long as I'm on my Claritin.  Still no peaches, cantaloupe, cherries or kiwi, even on meds.  But this is a big, big improvement.  :thumbsup:
Title: Re: Living with Food Allergies, 2013 and on
Post by: SilverLining on July 08, 2016, 10:14:24 AM
Just wanted to share some good news.

We are going to a baseball game. It's an evening game, and with traffic, we will be leaving before dinner time. I can't imagine there is anything safe for me...other than licorice. So I sent an e-mail and within minutes (literally less than 5 minutes) I received a response that I can bring my own food and drink in containers not more than 600ml. and no alcohol.

Yay! I don't have to chose between eating or breathing.

When we got to our seats, there were signs of peanut shells on the floor under a lot of seats, but fortunately, nobody sitting near us was eating any. They were all to interested in beer. Lol
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on July 16, 2016, 04:53:52 PM
Our special diet chefs presented us with a card today, thanking US for coordinating allergies and special dietary needs for the 3000 people here at camp. When we were at the kitchen today to thank them for doing everything to make safe meals for everyone, we never expected them to thank us. Those are some classy chefs. Two of them leave today, as do most of the participants, and we have one chef until I leave next week.

It is amazing at how much those chefs have learnt about allergies the past two weeks. Even the apprentice was catching mistakes by the cleaning crew with regards to cross contamination.

We need more chefs like these in the world.

And some humour this group may understand: in the special diets kitchen there is a broom with a label that says 'gluten-free, may contain traces of soy'

Title: Re: Living with Food Allergies, 2013 and on
Post by: GoingNuts on July 16, 2016, 10:03:50 PM
^^  :rofl:

Sounds like it was a great experience SC.  So gratifying to see your hard work pay off.  :thumbsup:
Title: Re: Living with Food Allergies, 2013 and on
Post by: Macabre on July 17, 2016, 10:14:11 AM
Very cool, space!
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on July 17, 2016, 08:53:59 PM
And today the chefs gave us their chef coats... to keep. They are truly remarkable.

They even mentioned they would want their company to hire us (the two special diets people) as contractors for future events. Wow.
Title: Re: Living with Food Allergies, 2013 and on
Post by: GoingNuts on July 18, 2016, 05:58:17 AM
 :thumbsup:
Title: Re: Living with Food Allergies, 2013 and on
Post by: rebekahc on July 18, 2016, 09:40:13 AM
That's awesome SC!
Title: Re: Living with Food Allergies, 2013 and on
Post by: hezzier on August 23, 2016, 06:40:43 PM
DS had 6th grade orientation today from 12-2.  I called ahead to make sure they were not feeding them lunch, which they were not.  I stopped in to the office to drop off all the medical forms, epis and benadryl.  Nope they couldn't take it because there was no nurse on the property...seriously, you have at least 250 6th graders here and no nurse.  DS will self carry this year so his epis were in his cargo shorts.  I seriously should have pointed out to them the error of their ways, but I just didn't have it in me.  DS gets in the car, tells me about orientation and says they finished up by serving popsicles (which he skipped*)...seriously, they were only there 2 hrs.

*I'm always afraid he's going to tell me he ate something that we don't have any info on, but I really need to trust him on this.
Title: Re: Living with Food Allergies, 2013 and on
Post by: becca on August 23, 2016, 06:56:33 PM
Seriously?  It never ends, right?  At least he made the right choice.  Dd would probably have a Popsicle, but would probably ask to see the label, at that age.  But that mystery food stuff drives me batty.
Title: Re: Living with Food Allergies, 2013 and on
Post by: hezzier on August 23, 2016, 07:42:53 PM
If it was s brand we normal use, then I would have expected him to eat it.  It was some brand that I had never heard of.
Title: Re: Living with Food Allergies, 2013 and on
Post by: hezzier on August 31, 2016, 09:24:34 AM
So DD (no allergies) was allowed to have food and drink in almost any class at middle school...kids would walk in with drinks from Dunkin' Donuts every morning  Well, she started HS this year and I was happy to hear that there is no food or drink in any of the classrooms except for water.
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on August 31, 2016, 09:58:07 AM
Hurray! Does that extend to teachers too?
Title: Re: Living with Food Allergies, 2013 and on
Post by: hezzier on August 31, 2016, 03:12:56 PM
I don't know, but it's not something that we have worried about in the past.  So far DS has not been super sensitive so we have never asked teachers in the past to restrict what they eat or have in their classroom.
Title: Re: Living with Food Allergies, 2013 and on
Post by: LinksEtc on August 31, 2016, 10:55:45 PM
.
Title: Re: Living with Food Allergies, 2013 and on
Post by: CMdeux on September 15, 2016, 09:15:27 PM
DD passed an almond challenge today!!   :coolbeans:
Title: Re: Living with Food Allergies, 2013 and on
Post by: Janelle205 on September 15, 2016, 10:17:24 PM
Awesome!  :thumbsup: Did she like them?
Title: Re: Living with Food Allergies, 2013 and on
Post by: rebekahc on September 16, 2016, 08:04:35 AM
Great news!
Title: Re: Living with Food Allergies, 2013 and on
Post by: MaryM on September 16, 2016, 09:38:08 AM
Awesome!!!
Title: Re: Living with Food Allergies, 2013 and on
Post by: GoingNuts on September 16, 2016, 12:01:18 PM
Excellent!  Opening that up has been a game changer for DS.  I hope it works out as well for Sky.  :happydance:
Title: Re: Living with Food Allergies, 2013 and on
Post by: Macabre on September 16, 2016, 12:21:19 PM
Game changer is right.  Yea!!
Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on September 16, 2016, 12:23:30 PM
Awesome!  Congratulations!
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on September 16, 2016, 01:45:43 PM
That is wonderful!!
Title: Re: Living with Food Allergies, 2013 and on
Post by: Linden on September 17, 2016, 02:18:30 PM
That's wonderful!!! Congratulations! 
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on September 18, 2016, 07:41:06 PM
At a local outdoor treetop obstacle course/zip line park today our group orientation leader noticed my SPIbelt, asked if it contained an insulin pump or EpiPens, asked what my allergies were, and gave me instructions for what to do to get help in the event of an emergency (whilst high up in the trees).  Kudos to him! I had been there a few times before and this was the first time anyone mentioned anything about my EpiPens.   :thumbsup:
Title: Re: Living with Food Allergies, 2013 and on
Post by: hezzier on September 21, 2016, 08:32:02 AM
And so it begins...just got a call from DS at school, they are doing some sort of standardized testing and a teacher brought in munchkins from Dunkin Donuts...
Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on September 21, 2016, 09:45:37 AM
Because our children are unable to take an exam without being fed sugar first!  Only in the USA!   :watch: :rant: ~)
Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on September 29, 2016, 01:49:26 PM
At the oral surgeon yesterday, DD has 4 impacted wisdom teeth that need to come out.  We talk about all her allergies.  He asks what happens when she eats egg?

He asks about her history with anesthesia.  I explain how she threw up (as all our allergy kids are excellent purgers) to the extreme after she woke.

We are discussing anesthesia.  He says they use 2 kinds.  One has egg, the other makes everyone extra nauseous.  He says what do I think will happen if he gives her the one with egg?  Seriously????  Seriously??????  "She might have anaphylaxis" 

So, we can't?  Seriously?  He does not want her to get sick.  Then he says OK what if we use the one without egg and before we wake her up we give her anti-nausa medication. 

ding ding ding!

Finally!  Keep that light bulb shining!   ~)
Title: Re: Living with Food Allergies, 2013 and on
Post by: ajasfolks2 on September 29, 2016, 01:54:54 PM
Oh.my.  Purple Cat!!!!   :disappointed: :disappointed: :disappointed:
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on September 29, 2016, 03:52:34 PM
Do they have full IV sedation as an option? Kind of the best of both worlds: no egg and less vomit.  Plus no ventilators.

Just awful that he would even suggest giving a drug with egg to someone allergic to it.  At least he knew it has egg though, not all of them do!

I hope the surgery goes well.  It is a tough one.
Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on September 30, 2016, 10:31:52 AM
Thanks!  I am so not a medical person but he did say she would have an IV.

Scheduled for Dec 21st so she can have winter vacation to recover at her own pace.  I keep hearing horror stories of extended recoveries.  Just happy she has no roots yet, less chance of nerve damage and of a hole to her sinus cavity - yuck!
Title: Re: Living with Food Allergies, 2013 and on
Post by: GoingNuts on September 30, 2016, 12:00:28 PM
PC, when I had my 4 impacted wisdom teeth pulled 30+ years ago, the surgeon instructed all his patients to take 1,000 mg of Vitamin C starting 10 days before surgery; he felt it reduced swelling and pain.  I can tell you that I was back at work the very next day, with almost no swelling.  I don't know if it was his skill, or the vitamin C, but something to consider.  Good luck!
Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on September 30, 2016, 04:47:47 PM
GM, thanks!  That is an awesome idea.  It will at least boost her immune system to prevent infection and best have a result like yoirs.
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on October 01, 2016, 09:44:55 AM
An advantage to living just down the street from the fire hall is that your EMS response time is around two minutes.   :-[

I guess that pizza place wasn't as safe as we thought it was. (Likely potato xc.)  *sigh*
Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on October 01, 2016, 01:05:02 PM
Oh NO!  Are you OK?
Title: Re: Living with Food Allergies, 2013 and on
Post by: GoingNuts on October 01, 2016, 07:03:59 PM
Oh goodness, SC.  I saw your post in another thread. Glad you're OK, but you definitely didn't need this.  :grouphug:
Title: Re: Living with Food Allergies, 2013 and on
Post by: MaryM on October 26, 2016, 08:45:51 AM
DS asked me to log into his google account to proof something that is due next week.  While I was in his account I saw a monologue he wrote for communications class.  He had a somewhat scary reaction at a food challenge in the summer.  I guess it really had an impact on him....he wrote a monologue about an allergic reaction....he is not allergic to nuts...here it is:

Dark.
   All I could see was the dark when I woke in the middle of the freezing cold night.
   The dream.
   It's what woke me up. The dream, when I had an allergic reaction at school… and nobody noticed. The dream, was so real. I could feel my throat closing, and hear the gasping. It reminded me of my eleventh birthday.
   I was at the restaurant when I had my real reaction. I can remember it so vividly. We asked about the nuts, they said there was none. The dish came out, steam rising from the plate. I take a bite. Within a few minutes I was on the ground gasping for air. I shivered. Just remembering that day made me feel sick.
   The dream was almost identical, except… I wasn’t ok after the reaction. The dream haunted me, like the memory… almost as if it was a warning.
   


Title: Re: Living with Food Allergies, 2013 and on
Post by: Puddles on October 26, 2016, 12:40:48 PM
That's very powerful Mary. I felt it as I read it.
Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on October 26, 2016, 02:53:47 PM
Wow!  Very emotional writing.
Title: Re: Living with Food Allergies, 2013 and on
Post by: GoingNuts on October 26, 2016, 07:23:08 PM
Wow, I was holding my breath reading that.
Title: Re: Living with Food Allergies, 2013 and on
Post by: Macabre on October 26, 2016, 10:23:59 PM
Oh my goodness. That is so gripping. I don't know what to say. I was overcome with emotion reading it. It's pretty amazing that he took that on.
Title: Re: Living with Food Allergies, 2013 and on
Post by: MaryM on October 27, 2016, 06:10:46 AM
Its so intense.  I think its fantastic and emotional and it worried me.  I asked him if he worried all the time?  He basically said he knows he always has to think about being safe but does not worry and is not haunted like the character he wrote for.  He is my calm kid.  I am very proud of this writing piece.
Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on November 07, 2016, 04:17:18 PM
Pride when your niece asks you to make her Sweet 16 birthday cake because that "egg free ginger-ale cake is the best ever" and she has no allergies!  "It just tastes really really good!"
Title: Re: Living with Food Allergies, 2013 and on
Post by: Macabre on November 07, 2016, 04:57:42 PM
Recipe please?
Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on November 08, 2016, 01:54:16 PM
Sure!

1 Box Betty Crocker Supermoist Yellow Cake Mix
1 Box (3.4 oz) Instant Vanilla Pudding Mix
1.5 cups room temp gingerale
1/3 cup vegetable oil
1 tsp baking powder
6 tbs flour

Preheat oven 350 degrees
Grease and parchment paper pans - this cake sticks!  A lot!
Combine all ingredients and mix with mixer for 3 min until creamy
Pour into 2 8" rounds or 1 9" x 13" pan and bake 30 - 40 minutes
Title: Re: Living with Food Allergies, 2013 and on
Post by: hezzier on November 13, 2016, 06:49:12 AM
Two appts with the allergist on Monday.  DS in the am for 6th month check up...will ask about component testing for tree nuts.  DD in the afternoon for first appt due to a reaction to a bee sting...guess we'll see what happens.
Title: Re: Living with Food Allergies, 2013 and on
Post by: GoingNuts on November 13, 2016, 07:20:56 AM
Good luck Hezz!
Title: Re: Living with Food Allergies, 2013 and on
Post by: hezzier on November 14, 2016, 11:02:15 AM
One allergist appt down, we left the office and went straight to Lab Corp for the blood draw for the tree nut component test.  Results will take a week or so.
Title: Re: Living with Food Allergies, 2013 and on
Post by: hezzier on November 14, 2016, 06:36:03 PM
Second kid allergist appt done...skin tests for bees was negative, had blood drawn just in case...results back in a week.
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on November 14, 2016, 06:51:28 PM
Sounds like a pretty good day, hezz!
Title: Re: Living with Food Allergies, 2013 and on
Post by: SilverLining on November 22, 2016, 10:10:32 AM
Weird but reasonably pleasant experience.

We like to buy frozen ribs. They come in sauce. Honey/garlic, BBQ, or chipotle. There are two brands we buy. DH was looking through the flyers and saw some in sale, I said I don't know that company. He said he's sure we've had them before, I said I don't know that company. He went shopping while I worked on a turkey.

He gets home, I open a freezer bag take out a box of the ribs and say "well, at least they are well labeled". Yup, in bold at the bottom of the ingredients Sauce contains peanut/nut.

DH took the three boxes back to the store. They said they cannot refund for frozen products. He points out the time on the bill...bought them 10 minutes ago. And says they have peanut in the sauce. She says "peanut?" And immediately refunds his money.
Title: Re: Living with Food Allergies, 2013 and on
Post by: SilverLining on November 23, 2016, 06:55:16 AM
Another weird thing, on the good(er) side.

On Facebook a "promoted" post showed up on my newsfeed. It is a company that I can buy some safe food from. This was about a new product, not yet available in all stores. Since their web-site does not list ingredients, I asked if it was peanut/nut safe. They said they would check and get back to me.

Ok, fine.

This morning I went to the post, by my comment, I see their reply to me, and notification that there are 2 additional comments. I click....nothing there. This happens when the admin for the Facebook page deletes people's responses. I'm not big on censorship, but considering on-line bullying is at an all time high, I can guess what kind of comments were deleted....and I appreciate it.
Title: Re: Living with Food Allergies, 2013 and on
Post by: Ciel on November 23, 2016, 10:49:19 AM
Wow SilverLining.... yes I guess those are good things. I'm glad you didn't have to read any derogatory comments. And maybe now your DH will read the labels in the store so he doesn't have to make a return trip.
Title: Re: Living with Food Allergies, 2013 and on
Post by: GoingNuts on November 23, 2016, 12:18:38 PM
Another weird thing, on the good(er) side.



Or, good-ly?  ;)
Title: Re: Living with Food Allergies, 2013 and on
Post by: SilverLining on November 23, 2016, 01:01:43 PM
Wow SilverLining.... yes I guess those are good things. I'm glad you didn't have to read any derogatory comments. And maybe now your DH will read the labels in the store so he doesn't have to make a return trip.

He usually is really good. But he didn't have his glasses with him.

Another weird thing, on the good(er) side.



Or, good-ly?  ;)

 :clap: :rofl:
Title: Re: Living with Food Allergies, 2013 and on
Post by: hezzier on November 25, 2016, 05:05:50 PM
I made someone's day on thanksgiving by making sure all the desserts were gluten free!  it was awesome to see her face light up when she could have them all.  She was very appreciative.
Title: Re: Living with Food Allergies, 2013 and on
Post by: SilverLining on November 25, 2016, 05:43:57 PM
Awesome hezzier
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on December 15, 2016, 09:15:02 PM
Mystery stomach ache and thumb nail-size hives covering one arm (and only one arm).  The joys of allergies and never really knowing where this stuff comes from some days.  And then waiting to see if it is just random hives and a tummy ache or more than that, when no new foods were eaten.  And then wondering if any new symptoms are anxiety or allergies.  :tongue: (I will be okay, it has been an extremely hive-y and eczema-y month for me.)

Someone needs to invent a device than can detect an allergic reaction in progress to take out the guess work.  Any takers?  I really think such a device would be a huge benefit to our community, so long as it could differentiate milder environmental vs. food reactions, the more severe ones, or some key markers for anaphylactic reactions.  Like a diabetic sugar finger poke test, maybe?  I have no idea if that is even possible, beyond the blood test I have had for suspected atypical anaphylaxis a few times.
Title: Re: Living with Food Allergies, 2013 and on
Post by: PurpleCat on December 16, 2016, 08:19:04 AM
Space, the only thing worse is when it is happening to your kid, so you are guessing about someone else!  And staring....and asking questions....and requiring too many peak meter readings....and circling hives with ink to see if they are really getting bigger.....and trying to be calm and sane on the outside while inside you are scared sh**less!

I agree, would love a way to know for sure what the heck is going on.


Hope it is all resolved this morning.
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on December 17, 2016, 08:19:58 PM
My poor husband is like that sometimes too. Other times he just rolls his eyes and tells me to go away. He seems to have pretty good instints though and when he gets worried I know it means we will be going to the hospital or clinic.

The hives went away after an hour or so. It was rally weird.

I had an interesting experience this weekend at my husband's work party. The firm owners were all very concerned that I wasn't eating anything. They honestly want to have an event where I can enjoy the food. It was so hard to explain it to them how difficult that would be. They understand no blatant allergens but fail to grasp the cross contact and calling companies for traces factors. Has anyone ever had success with this type of thing? (It was a catered finger food type event with actual chefs cooking stuff right there in the kitchen.)

Baby steps, right? The fact that they were all concerned and spent time talking with me to try to make future events safe was touching.
Title: Re: Living with Food Allergies, 2013 and on
Post by: spacecanada on December 17, 2016, 08:28:57 PM
Also random: when you know you need to be medically stable (no Epi reactions) for three months before a trip to have medical coverage for allergies whilst away, one eats with an even more extreme level of caution. (I already don't qualify for trip cancellation due to allergies because my last reaction was less than three months ago. 😬 )

Oh, I spent considerable time on the phone learning how our travel insurance policies are affected by allergies and what they will cover in the event of an allergic reaction whilst travelling. The agent I spoke