Living with Food Allergies, 2013 and on

[Macabre]

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.

[YouKnowWho]

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.

[GingerPye]

That is huge!!   

[Janelle205]

So glad that you had a successful trip allergy-wise.

[CMdeux]

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!

[Janelle205]

Manufacturers that change product formulations.   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. 

[GingerPye]

Oh dear.     So sorry, Janelle. 

[Gray]

*** poof ***

[CMdeux]

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!

[Gray]

That's great CM!  I hope things continue to go well with the egg dosing.

[Janelle205]

I'm reacting to blueberries now, apparently. 


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.

[Gray]

Sorry to hear that Janelle 


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.

[CMdeux]

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.

[Gray]

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.

[CMdeux]

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.