:'(
I can't believe I am writing this. After the jubiliation of having my son pass his double blind placebo controlled challenge and then passing his open challenge I am afraid he is still allergic. He grabbed an oh henry bar tonight, the small snack sized one and ate it. Two hours later he develped stomach cramps and about 4 hours later developed hives on his body and vomitted. The hives have since resolved and he hasn't thrown up again. I feel AWFUL. I though I was following the allergist advice about introducing peanut into his diet to preven re-emergance of the allergy. Now I feel as if I almost killed him. I am kicking myself since I think it was too much for him to eat at once. I am so frustrated and confused.
Do we go back to being a totally PN free zone? We ate out at a restaurant after his open challenge and were able to eat the ice cream they offered. That was the one bit of freedom we have had since his challenges.
He had absolutely NO symptoms at his challenges and in fact he liked the taste of peanut butter. He did not develop any hives or wheezing after the peanut butter.
Help!
I'm sorry. :( Is it possible there's another ingredient in the Oh Henry bars that he has developed an allergy to?
I'd recommend calling your allergist and describing what happened and decide together what the next step should be - retesting, avoiding, etc. It sounds like he probably still has an allergy to something.
Although it doesn't happen often, it is
possible to pass a food challenge, and then to have a reaction. Here is some info:
"Oral food challenges for diagnosis and management of food allergies"
http://www.uptodate.com/contents/oral-food-challenges-for-diagnosis-and-management-of-food-allergies (http://www.uptodate.com/contents/oral-food-challenges-for-diagnosis-and-management-of-food-allergies)
Quote
Patients and parents should be counseled that delayed reactions or reactions to a normal serving size of the food eaten all at once can occur, usually within a few days of the challenge, but they should also be reassured that these reactions are rare.
"False-negative oral food challenge"
http://www.aaaai.org/ask-the-expert/false-negative-oral-food-challenge.aspx (http://www.aaaai.org/ask-the-expert/false-negative-oral-food-challenge.aspx)
"Evidence for False-Negative Open Food Challenges"
Quote
A total of 334 challenges on 276 patients were reviewed. The majority of challenges, 253 (76%), were negative. There were 4 cases (1.6%) in which patients developed symptoms consistent with an IgE-mediated allergic reaction at home to the challenged foods after appearing to pass an open-OFC: 2 were to soy, 1 to egg, and 1 to cashew. Time to symptom exacerbations following the negative challenges ranged from 6 hours to 5 months.
Some members here have personal experience with this issue:
Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy (http://foodallergysupport.olicentral.com/index.php/topic,883.0.html)
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I hope that you and your allergist can figure things out :heart:
Ok, got a call from the nurse at the allergist office. She said that he didn't think it was the peanut since he passed the double blind placebo controlled trial and the open challenge with no issues. He definitely had an allergic reaction to something for sure. She said that the peanut protein should be reactive whether it was in peanut butter or in the peanut in the chocolate bar. She said that they could rechallenge him again if that would clear up any confusion.
I still haven't been able to sleep or eat since last night. I am a basketcase.
Oh my goodness. :grouphug:
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.
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.
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.
Does he have tree nut allergies. Herseys makes almond items. Any chance there was a cross contamination.
Big hugs.
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.
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.
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 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?
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).
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.
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.
Is it possible for the staff that administered the challenge to send a written report to your child's regular allergist for review?
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). :hiding:
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.
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.
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.