Ugh-- I am so bummed out to hear that.  I have been wondering how your DS was doing.  I'm sorry that it isn't good news. 

So I'm very interested in how things went with this and how your child is doing now. My ds is more allergic now than he was before his "passed" challenge.

Lala here......I had trouble transferring my name over, so I just changed it.

I am SO SO sorry you are going through this. To be honest, I totally dropped out of the allergy world for quite a while after all this happened with my son. The stress was so overwhelming and I just wanted to keep him in a bubble where I didn't want to listen to any other person's advice (including doctors). 

We are much better now and live life just as we did before the challenge.

If you have any questions, feel free to ask. But know that you're not alone and you have support.

Is it possible for the staff that administered the challenge to send a written report to your child's regular allergist for review?

So is there a tolerance over which your child will react?I'm just trying to wrap my head around it. I thought that once they are react to the peanut protein it is unpredictable as to how severe or to what amounts they will react to? Is it possible that my son has some tolerance to peanut but not to large amounts of peanut? I hope that this is possible.

Maybe the amount of peanut?  Although DS has undergone desensitization, he still does not eat large amounts of peanut.  He has 3 peanut M&Ms a day, no more, no less.  We were told he cannot have large amounts, like a PBJ.  Not that he would definitely react to a larger amount, but that it is unknown.  But he does not have to worry about small amounts of peanut.

Maybe.  Cashew tends to have that kind of potency, for sure (where even VERY low levels of XC could cause a bad, bad reaction, much like peanut or sesame).

The amount of peanut butter given was about 1 teaspoon altogether I would guess. Maybe a titch less. I can't remember how much they said he was getting.
As far as I know all the other tree nuts RAST testing wise were negative. He has had no other problems with other nuts although we have never given him any due to the issue with cross contamination. I don't think we have rast tested for any other tree nuts since he was an infant. Maybe something to explore?

What would the status of tree nuts be? Any known reactions, or are you clear on tree nuts? Any other known allergens or was it only peanuts your child is known to be allergic to?

Hey sorry about the million questions here it took me a while to realize that you were the same person posting under other user names about the Viaskin patch trial. I reviewed everything you wrote there. So the double blind was final count 460 mg peanut flour equating one peanut ~300mg about one and a half peanuts. One month later it was open peanut butter, was it more than the roughly 1 1/2 peanut amount during the double blind?

The double blind placebo controlled trial was with peanut flour I assume or some kind of peanut protein mixed in chocolate pudding.  The open challenge was with peanut butter. He had no reaction what so ever and they were a month apart.
My son was fine the following day, we ate at a pancake restaurant and he was back to normal except for an occasional cough and wheeziness that settled with ventolin. Hard to know if it was something he was fighting because he can get wheeziness with a cold on occasion.
I just don't know.
I think I had post traumatic stress reaction yesteray from all the stress, couldn't eat, couldn't sleep.

So sorry!  I hope you are able to get clear answers.

My DD had this happen with egg after passing an open challenge and of eating it in different forms for awhile.  It was harder eliminating egg the second time, such a disappointment.  Egg kills her gut too!

I'll be thinking of you.

Does he have tree nut allergies. Herseys makes almond items. Any chance there was a cross contamination.

Big hugs.

What stuck out for me was the delayed reaction and the stomach cramps. 

My shellfish reactions are all delayed two hours and are GI. At that two hour mark I've also had other symptoms present--difficulty breathing, chest pains, etc. After talking with my doctor, we thought this was a primarily GI kind of thing.  Problems happen after the offending food reaches a certain point in my gut.

For kids who are undergoing desensitization, stomach cramps tend to be the leading symptom.  Lala's child's stomach hurt.

What is it with the gut? 

Just thinking that the issue may be there.  Maybe he's still allergic--maybe outgrowing.  Maybe the form presents greater issues with the gut.

IDK.


I do wonder about small doses for a while. I'm not suggesting you do that, byut after doing reading about desensitization, I wondered if Lala's child could have been served by gradual acclimation. 

What form was the peanut given during the double blind then open? It sounds like your last post indicates the open challenge was peanut butter which would be super hard to mistake rather than say peanut flour laced item. How much total peanut was consumed?

I'm not going to pretend I can figure this out but maybe with more details and enough FAS eyeballs on this someone might hit paydirt. I would only go as far as avoiding large obvious sources of peanut ingredient until you at least get some pacing distance from the Heath bar reaction. I would shelve giving peanutty items in order to repeat the challenge bring in a Heath bar from the same bag if you can just for label reading including any other nut contamination. If the allergist is offering at least you have expert help on hand and a clinician to witness any reaction for the record.

Oh my goodness.   


Well, very definitely read LaLa's story.  She got told the same thing.  Repeatedly.  Best advice here is to listen to your gut, IMO.

Sounds like you're thinking that SOMETHING is very, very wrong.