DS Needed epi after baked egg challenge

[my3guys]

The good news is he's had his first epi, and knows that it helps him.  I hate that he needed it though. He started with a really bad stomach ache, started writhing around, then it progressed to his throat feeling "clogged" and he started to get really sleepy. I got the nurse and she administered epi.

Here's where I'm stuck -- the recipe called for 6 muffins, with a note that if you end up making more with the batter than 6, to bring in 2 muffins.  I ended up making 7 with the batter, so I brought in 2 muffins.  I told her I made 7.  I didn't realize it until afterwards (Stupid me!) but she gave him one whole muffin and HALF of the second! Now...if I had made 12 muffins, that would have been correct dose. But I made 7, so in my mind she overdosed him. I asked her about it (in a calm measured way because I didn't want to upset my son who just had epi and felt miserable). And her response was something to the effect that they always push the dose to see if there's a reaction, and that he should've been able to tolerate what she gave him if he wasn't allergic.

I get the tolerance part, but am I crazy in thinking that by giving him that much it most likely made his reaction worse???

He's had a number of baked egg challenges, and they've never ended like this.

Boy am I on edge and I'm trying to shake it off.  He feels much better and is very calm. I want to project calmness -- drinking my tea taking deep breaths. I'm trying. 

Thoughts?

[becca]

I am sorry he had such a severe and uncomfotable reaction.  I can only offer support as we have never done challenges for egg.  Dd was allergic, is allergic, but always tolerated baked egg in things like cakes, banana bread, etc...  She had been taken off all egg to help her outgrow, but after 10 years like that, I tried her on th ebaked egg on my own, *knowing she had never reacted to it.*  Her eactions were a strong contact response, with redness and welts where powdered egg whites touched her(incake frosting).  It resolved on its own after cleaning her up too. 

I am not sure if once a reaction gets rolling if it is dose dependant.  Hopefully someone else knows.

Sorry I am not helpful, but just wanted to give you some support.  Hugs.  How is he now? 

[maeve]

So was this a baked egg challenge or a challenge for egg?  I am surprised that they didn't start with a lower dose.

DD's baked egg challenge at Hopkins started with a small amount of the cupcake. (I'd actually added more egg to the recipe having been confused by the directions but they calculated the dosage based on the number of cupcakes made with the batter and the number of eggs in the batter). I think DD started with about 1/8 of a cupcake. She never made it to a full cupcake. She reported some mild stomach issues and with the next dose her stomach felt worse and the nurse felt that the symptoms warranted a 4 teaspoon dose of Benadryl and stopping the challenge there. DD did not go into anaphylaxsis. The set her "dose" for baked egg a the level below where she got the Benadryl.  DD complains that things with egg in it upset her stomach and she will not follow the baked egg protocol. I and Dr. Wood agree that is her decision.


Oh, DD tolerated 1/8 of an egg in her challenge but her initial dose was set 1/16 of an egg. 


Unfortunately for DD, she was diagnosed with her egg allergy at 9 months. I know she had frozen custard at least 2 months before that without issues and had part of a waffle at brunch a month or two before her diagnosis without a problem. Once diagnosed, egg was eliminated from her diet completely per her allergists. Her initial reaction was hives and welts like becca's daughter and they too resolved as a cleaned her with a cool washcloth.  However, I recall the wheal at her skin test with her second allergist when she was about 2: It was nearly the size of a salad plate. She's had only one other reaction to egg and it was also contact based and involved hives and some swelling.

[my3guys]

Thanks you guys.  Always so good to "talk" to others in similar shoes.

Maeve: this was a baked egg challenge.  She did divide the doses up into quarters of muffin at 15 min intervals.  He finished 1 muffin with a hive on his neck, and maybe slight stomach discomfort.  She then gave him half of the next muffin at once and things went downhill.  Perhaps they would've gone downhill anyway...but Mt. Sinai doesn't go "over their dose" in one testing, so that's why I'm questioning this.

[CMdeux]

Yeah-- wow-- this sounds like a massive dose for a challenge, in light of the fact that this is a kid with reaction history.

DD's reaction history with egg has been very severe, and very low-amounts.

She would NEVER have tolerated that kind of dose.  We challenged her with 1/40th of an egg, well-baked, over five hours.  It wasn't to establish where a FAIL would happen... but to establish whether it would be possible to dose her at home well within a window of safety.

KWIM?

Different approaches, and maybe-- different goals?

I don't know.  I think that our allergist could have gone either way on it, but this was our call, and we wouldn't have done the challenge that you describe.  Not then.  Maybe now, after several years of dosing.   Our allergist is a Sinai-trained guy; he tends to view it as a matter of seeing what is SAFE, not pushing to see what isn't.  Not in someone with known anaphylaxis history, anyway. 

I think that there's still anaphylaxis potential, but I also think that we've pushed the threshold high enough that environmental exposure is less likely to be a severe risk.  It's opened up some quality of life, for sure.

[eragon]

I would question the hospital procedure for challenges, it failed at one hive why carry on?



and what criteria did they follow to assume that growing out of baked egg as a stage that your child had reached?

[my3guys]

Just to be clear: this failed challenge today was at our local allergist's office, NOT Mt. Sinai.

We've done challenges in both places before...just not with this nurse. Both his blood and skin test pointed towards him being able to tolerate baked egg. And Eragon, I agree about the hive.

[maeve]

Thanks you guys.  Always so good to "talk" to others in similar shoes.

Maeve: this was a baked egg challenge.  She did divide the doses up into quarters of muffin at 15 min intervals.  He finished 1 muffin with a hive on his neck, and maybe slight stomach discomfort.  She then gave him half of the next muffin at once and things went downhill.  Perhaps they would've gone downhill anyway...but Mt. Sinai doesn't go "over their dose" in one testing, so that's why I'm questioning this.

The way your challenge proceeded until the half muffin sounded just like ours at Hopkins. DD never developed a hive. She just had the complaint that her stomach didn't feel right.  DD has only ever had the one baked egg challenge.

[my3guys]

Luckily DS didn't have a rebound reaction, so he stayed fine the rest of the day.  CM you were the first person I thought of when she explained how much she gave him because I very clearly remember your dosing thread with baked egg.

I will be following up with the allergist, just didn't have the energy yet.

I didn't think he would need an epipen for anything baked egg.  I was wrong -- I hate that he needs it for baked egg, it frightens me.  We've always been very careful with what he eats...and even though we avoid all things egg, I've always put it in a separate place in my mind.  I haven't been as worried about potential cross contamination with egg for example.  I know he tolerated a good deal of egg before he reacted...but it was still a portion of ONE baked egg that made him so ill.

Have I mentioned lately that allergies stink? No? Well they do!!

[momma2boys]

No advice, just hugs and sorry this happened.

[CMdeux]

Even if DD's peanut allergy were to magically resolve, she'd still need to carry epi for her egg allergy, too.  She probably always will.

I mean, sure-- I dream of a day when locking lips with some guy who just ate a sandwich won't require... the talk... 

{sigh}  But I don't really believe it much.  She still has trouble if DH cooks eggs (even with our good exhaust fan on high) while she's in the same part of the house.  So yeah, doesn't give much hope.  Allergies DO suck.  BIG time.

[Macabre]

Oh I am sorry. (((Hugs)))

[my3guys]

Thanks for the support guys!xo

[my3guys]

Just thought I'd follow up.  We were at Mt. Sinai this week (have I mentioned how much I love that place?!) and I filled them in on baked egg challenge.  Both the fellow and Sicherer felt the reaction had more to do with timing and not the additional egg in that he would've reacted anyway, it just took a while.  I still wonder if it would've been as severe without the additional serving...but I guess we'll never know.

I'm at least relieved (I think) they weren't completely horrified so if I need to go back to the local place in a pinch, I guess I can.

We're waiting on some blood work, but may have some other challenges in the works And if we do, I feel much better making the trip to Mt. Sinai than doing them locally again.

[Macabre]

I think doing them at Mt Sinai is a great idea.