Living with Food Allergies, 2013 and on

[GoingNuts]

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. 

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. 

[krasota]

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.


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*

[SilverLining]

I'm with you krasota.  No need to start that type of socializing that early.

[ajasfolks2]

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!!!!

[mommabridget]

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. 

[SwayGirl]

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..."  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

[CMdeux]

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.

[hezzier]

Swaygirl- I sent you a PM

[SwayGirl]

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

[Macabre]

I went to one at Duke. 

[Lisa]

I know my kids' pediatric allergist offered to test me for insect venom allergy, so I think many would be amenable.

[CMdeux]

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.

[GoingNuts]

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?

[SilverLining]

GN, allergy nightmares are the worst!

[CMdeux]

I hear ya.

I'm waiting for the airplane dreams to start.