Living with Food Allergies, 2013 and on

[PurpleCat]

OH skip Brachs.  Starburst candy corn RULES in our house!!!!!     I eat too many - they are so yummy!

[krasota]

OH skip Brachs.  Starburst candy corn RULES in our house!!!!!     I eat too many - they are so yummy!

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

[PurpleCat]

OH skip Brachs.  Starburst candy corn RULES in our house!!!!!     I eat too many - they are so yummy!

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

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

[krasota]

OH skip Brachs.  Starburst candy corn RULES in our house!!!!!     I eat too many - they are so yummy!

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

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.

[Gray]

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.

[PurpleCat]

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......

[GoingNuts]

PC - 

Fill us in tomorrow!

[CMdeux]

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. 

[krasota]

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.   

[PurpleCat]

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.   

   We just opened another bag!!!  So Yummy!  Never heard they tasted like furniture polish - LOL!  I've never eaten that before!  LOL!

[PurpleCat]

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!

[twinturbo]

@Gray

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

The Smart Gambler's Credo says

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.

[CMdeux]

PC, that is terrific!!  I'm so glad that she had a good time.   

[GoingNuts]

Hooray for PC's DD! 

Other parents really can't imagine what these milestones mean to us.

[Gray]

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.

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.   

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 - 
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.