Steps in egg food challenge

[kcw]

Our 13-year old son has a 'heated' egg challenge today at 1:00.  We have another son (10) that also has an egg allergy.  Not to get bogged down in details, but curious what steps others have seen in the testing phase.  If he passes, what is next, etc.  Will he proceed to a raw egg food challenge? 

Thanks

[CMdeux]

For highly heat-treated egg, usually you do maintenance for a time with regular dosing in the tolerated form.

Some people use prepared foods, others use home-made "doses" (cupcakes, etc.) and otherwise continue avoidance.

Good luck today!! 

[maeve]

Your physician should provide you with what the process is after the challenge.  It's not really a pass/fail challenge. It's to set a dose at which to start the process of gradually introducing baked egg in the diet.  It doesn't necessarily lead to an egg challenge.

[twinturbo]

They should give you some protocol guidance on maintenance and progression. I've seen it done quite a few different ways, unfortunately. On the flip side it should be personalized for best patient outcome. I'm sure you'll do it anyhow but don't leave without clear protocol, especially if the pass isn't so cut & dry regarding pushing through symptoms. I think that's the one I hear the most confusion about, that and baking protocols.

[kcw]

Well....all for naught.  Very disappointing day.  My wife just texted and said that only a small bite had to give Epi-pen.  Very bummed!! Will find out more specifics when she gets back in town from Dr.

[twinturbo]

Oh no, hang in there. I've been through a failed challenge after first dose requiring epinephrine. They'll probably observe for a few hours, maybe prescribe some prednisone. Truly sorry to hear.

[kcw]

Trying to hang in there but tough.  I know there are many more folks that have experienced the same results but still doesn't make it any easier.  I guess we just have to see it as a 'bump' in the road.  At 13, not sure what statistics show but think chances of outgrowing start to decrease.  Anybody with some good news to give hope?

Thanks to all.
Kelly

[twinturbo]

Possibly, and I think CMdeux may be the best person to address this because she has the first hand experience with a small threshold VERY highly cooked dose for taking the edge off of cross-contamination rather than building tolerance, and also because she has the professional capacity to calculate dosage of protein.

I'm not trying to give false hope, yet the protocols can vary widely as can baking methods, dosage and goals. First we're all going to want to help you and your family recover from this challenge.

[CMdeux]

YES.


Honestly, DD could probably never have passed a regular egg challenge.

She "passed" her first one at 1/90th-1/95th of an egg, baked into a commercial mix at 50% of the instructed rate, and baked for about 250% of the time directed in the mix.

We slowly ramped that WELL-baked dose up over 3 years to a point that seemed VERY safe still (but under a "normal" person's dose of egg), and have never taken it higher than 1/30th of an egg baked into cupcakes/etc.

That reduces risk and allows for normal living without a lot of risk of anaphylaxis, but that risk is why we've not taken the dose into "desensitization" territory.  It's more about making anaphylaxis from unavoidable exposure less likely, and making things like restaurant meals and mass-produced pasta/bread less risky.  Making a flu shot lower-risk.  That kind of thing.

[kcw]

A bit later I will post the recipe given to us by our allergist.  I guess I am a little surprised at the amount of egg as well as the determination of the dosage....it wasn't really discussed.  My wife said that it was an oatmeal cake cooked at 375 deg. and had 3 eggs in it.  I'm not sure of any other specifics right now.  Cake was moist.  Another child came into the office and the cake they brought in had only 1 egg.  Thoughts on the process?

Thanks

[rebekahc]

So sorry for the failed challenge!

That sounds like an awful lot of egg for a heated egg challenge - maybe for an outgrown completely challenge, but not a tolerance one.    I have a pretty high egg tolerance and even I would probably react to that much egg.

[CMdeux]

Exactly-- my egg tolerance wasn't that high until I was more or less "outgrown" either.

I over-rode our allergist's advice "just make it the way you should in a regular recipe" and discussed with him the fact that I was so wanting at least-- a STARTING point-- as a result of a challenge.

Hitting DD with 300 mg of egg protein in a single dose didn't seem to me to be a good way of doing that.  At all.  Not given what I knew about her reaction history (which was even fairly recent, at the time) and the fact that she so consistently reacted to shared lines even when they'd been STEAM washed (like in pasta production).

So that's why with this-- we did it MY way.  Allergist actually agreed with me, and in truth I think he was just afraid to ask (or maybe hadn't thought all of the math through himself)... but at any rate, when I showed up with a paired set of challenge foods and a concentration of egg in the experimental side, he was obviously elated.  His exact words were "It feels just like being back at Sinai with the dieticians providing all these neatly measured doses!" 

Anyway.  Long story short, I'll give you the link to all of the gory details.


Baked egg challenge...(CMdeux's DD)

Be sure to read that all the way through.  My DD is very definitely still allergic to egg, from what I can tell-- though (and this ought to give ANY parent pause) we may have to do another challenge because she is beginning to doubt the nature of that allergy and I fear that she will begin to take risks as a result. 

I haven't yet discussed that part of things with our allergist, but it's on the agenda for this spring.  I think we're going to try to do a number of challenges this summer.

[kcw]

Thanks again for all the input.  We have been happy with our allergist and have been going to her for about 8 years but I also thought this was a high dose.  We were hoping for some comfort that perhaps he could eat bread at a fast food restaurant with no worries, or even french fries that may have cross-contamination from batter with eggs.  But, with this dosage, she basically said well, we will test again next year.  Perhaps the same recipe with only 1 egg may have told us a little more.  Our son didn't really talk much about it at all last night.  Perhaps mentally he may have been thinking what the impact would have been on his 10 year old brother if he had passed.  Our 10 year old son is struggling with 'paranoia' after giving himself a shot last summer.  Thinking he may have to see a specialist that deals with this sort of thing that our Allergist has recommended.

[CMdeux]

The other thing that I really encourage is single-blinding and use of a control-- our allergist (trained at Sinai and still very much in that loop with the big gurus) won't do a challenge without one, and while in our case it's because of the nature of my DD's reaction history (the "first" objective symptoms for her may well be arrest/loss-of-consciousness), it's been helpful to my DD to know that she won't know when she gets the first dose of the allergen during a challenge-- will it be the first dose?  the second?  The fourth?

This leaves her feeling MUCH freer to report any symptoms, and know that she can report them as "I'm not sure if this means anything, but..."  During her egg challenge, she DID report chest tightness after the first dose, which contained no egg.  It was nerves-- completely.  Heck, I'm betting that my own shortness of breath was measurable, too.   

[twinturbo]

Hope your son is resting up today. 

You asked what other alternatives are out there. When you feel up to it you could investigate one of the egg therapy clinical trials that are currently recruiting at different locations sort of along the Eastern seaboard. It's a much lower dose, and you'd have to get the kids on board, talk to your wife, see how you all feel, and so forth. But it would be one option if a typical baked challenge isn't in the cards right now. Not for the casual participant, there are people here who have done other clinical trials and OIT that could tell you more.

http://www.clinicaltrials.gov/ct2/show/NCT01846208