HI
My sone has a peanut allergy diagnosed when he was 18 months old when he did a craft with peanut butter. His wheal at that time was 7 mm and he has never had a reaction and we have been vigilant about being peanut free. His RAST was 60 at 2, 23 at 4 and 30 just 2 months ago and he is now 9. There is a chance that he may be able to get him into the viaskin peanut patch but it requires a peanut oral challenge and the thought of that terrifies me. I haven't been keeping up on the latest research since I had given up any hope of a treatment for him but I was wondering if anyone has any thoughts on the peanut patch and whether this may be the way to go? I am encouraged by the results with the milk allergy but I am also worried about sensitizing him more.
He is getting to the age where he balks at wearing the epibelt and forgets it constantly.
Any help would be appreciated.
Thanks
I had not heard about the peanut patch. My DS recently was desensitized to peanuts here: http://www.nefoodallergy.org/ (http://www.nefoodallergy.org/) and it was so totally worth it. But I'm afraid I can't help with the patch.
Corky, I don't know much about the peanut patch, but I can give you the pep talk about the challenge. We just went through it for another clinical trial (FAHF-2) and they are EXTREMELY careful. In addition to caring about the kids involved, they know that a death or serious injury will get their trial shut down, so they do not take risks. They ramp up doses very slowly and look at vitals over and over and OVER. It's not fun, but it was actually much easier and more controlled than failed challenges we've done in just the doctor's office. In this case, they *know* the child will fail so they take every precaution.
The patch has gotten very good results in Europe. I think desensitization comes down to:
- Could it do harm? (In other words, does sensitizing kids a little bit perhaps "lock" their immune systems to that final level?)
- Does desensitizing through the skin work differently than orally or sublingually?
- Would you be happy if your child only achieves tolerance to a few peanuts?
What I've been hearing from parents of older children is that the dependable buffer zone of even a few peanuts might be worthwhile, especially if that buffer also tamps down the ferocity of a reaction. I don't think anyone knows yet if this is the case.
We obviously did not go with desensitization, partly because it wasn't available in Chicago where we are, and partly because we thought FAHF-2 had a better shot. There are several thousand years history behind FAHF-2; plus, it seems to regulate the entire immune system, not just expand the balloon for one allergen. That's key for us because my child has several allergies. Peanut is almost an afterthought.
P.S. We had two people not qualify for the trial we're in. They went through the challenge and passed. That's always a possibility, especially since your son has never had a reaction. Wheals and RASTs don't always = peanut allergy.
... and really, on that note, WOW, wouldn't that be pretty much a wicked awesome reason to not be included in a trial??
I am going to second the 'caution' that Boo noted above. All of the researchers involved in trials or studies are painfully well aware of what a death or a permanent injury would do to the entire trial/study. They do NOT want that to happen. Do NOT want.
They are, if anything, much more cautious from what I can tell (and from hints dropped by our allergist re: specific physicians doing desensitization vs. trials) than the few places which have rolled out desensitization protocols as regular treatment.
While there hasn't been a death anywhere associated with a trial since... well, in over a decade, anyway... it definitely pays to be aware that any challenge is serious business. I wouldn't trust a doc that didn't treat it that way.
Have you talked to the docs running the study? I'd do that, at the very least.
(Oh, and stick around-- many of us have gone through the 8-10 yo 'if my HEAD weren't attached, I'd forget it too' years. Ugh. It's a nightmare when you add epinephrine into things. :) But I'm sure that some of our parents who have teen boys can offer some insights into this age and gender. )
My DS was initially involved in the viaskin patch trial where we live. I'm not sure what stage the trial is in now, but when we first got involved a little over a year ago, it was still in the first saftey stages, meaning they were only testing tiny minute amounts and not aiming for actual desensitization yet.
We went through the initial appointment and he qualified to be in the study. We ended up opting out of the trial for a couple reasons: 1) My son has EXTREME anxiety and had just been diagnosed with an anxiety disorder and put on medication for it at that time. I knew going through blood withdraws, peanut challenges, etc would not be feasible at that time with how high his anxiety was. 2) Since participating in the trial in the saftey stages wasn't even going to desensitize him, I didn't think it was worth the anxiety, pain, and time that would be involved in it. If it was a later stage of the trial where they were actually desensitizing, I would have pushed for it.
When I met with the doctors at his first appointment, they got me very excited about the idea of the patch. Their hope is that it will be safer and much easier than oral desensitization. I hope that's true!
Hello, just an update
We have just finished the double blind placebo controlled food challenge and my son did not react on either day. This was not what we expected. Based on his numbers and his SPT he had a 95% chance of reaction to the peanut laced food. He does not qualify for the study now obviously but we are now scheduled for an open challenge next month. Now I am doubly terrified. Maybe they dodn't give a sufficient dose to induce a reaction? Ugh. I don't know if I should be happy or sad.
Oh, I think "cautiously optimistic and incredibly freaked out" would probably cover it for me-- but as I said originally, what a terrific thing if he passes the open challenge, yes?
:grouphug:
If he passes the open challenge, obviously a LOT of things will have to change in your lifestyle-- it's a huge mental adjustment. We have a few members here whose children have passed peanut challenges and now live-- well, I' was going to say "normally" but since they are living with FAS member parents, perhaps that isn't the right term... LOL. (Said will all affection and completely tongue in cheek, Mookie. :heart: )
Anyway-- we're here for you no matter WHAT happens at that challenge.
I think you should be happy.
Wow, that's big news! It could be a really good thing. :) At the very least, it sounds as if his reaction threshold is pretty high, so that makes each day so much safer than if he reacted to minute amounts. On the off chance that he fails the open challenge, would that make him (again) a candidate for the patch?
good luck Brianandboo ! I would have like to be in that study - FAHF2. But my boy is nine not 12.
I agree that something that addresses the whole immune system is better than just working on a single allergy -- BUT -- maintaining tolerance may be a little more expensive with FAHF2. One costs peanuts the other ???$$$
But I still would opt for FAHF2 if it indeed works. My geuss is that it will.
Did they reveal how much peanut he consumed?
I am absolutely stunned at his results and I feel a little hopeful. There is the voice in the back of my mind (as all you parents know) keeping the what if's going...what if there wasn't enough of hte peanut prpotein? what if he reacts terribly to a smaller amount next time since his immune system is now primed? How are we going to get him to eat the peanut butter without him or me freaking out?
The allergist seemed prettty confident about the open challenge and he said we could do it in our home town. I know our local allergist and he wouldnt do an open challenge on Jett for a million dollars since the literature says that his chance of a severe reaction is so high. So we are going to fly back to Ottawa to do the challenge (and visit the grandparent) next month. What a life changer this may turn out to be. In some ways I am glad that the challenge was done under such a controlled situation with the study, there is no allergist that would have ever challenged him in a million years with his rast and spt unless it was part of a study I bet.
Thanks for your support and I will update you with the results of the open challenge!
I think the total dose was over 450 mg. They progressively doubled the dose until the final dose was 300 mg which I think is equivalent to 1 peanut. WIth the other doses it added up to over 460mg of peanut protein. They challenged another little girl the previous day and she got through all the doses but complained about nausea throughout and then promptly threw up the within half an hour of the last dose and had to be given epi and antihistamines
That's nothing but good news that he ate at least one full peanut symptom free under double blind. I know you mentioned positive SPT and RAST, what was his reaction history? I'm sorry if you wrote it out already and I missed it. Sleep deprivation is getting me. Thus far it's looking in your favor. :)
His SPT was over 10 I am sure and his RAST was 28 two months ago. He had a reaction when he was 18 months old when he touched peanut and his face became so swollen he was almost unrecognizeable. He has never had another reaction as far as I know although we have been very careful about not exposing him. His highest RAST was when he was 2 and it was 63. It went down to 23 when he was about 4.
Just as an update. My son just had his open challenge today with peanut butter and he passed!! His spt was still positive today (no surprise). My son liked the taste of peanut butter and had no reaction whatsoever to the peanut butter. I am flabbergasted. Based on his rast and spt i never would if predicted this.....
:happydance: That's AWESOME!!!!
Interesting, as I know that there was a recent blog post about FAHF-2 treatment also resulting in a much increased toleranace upon challenge, but still with a HUGELY positive SPT.
That seems to not be indicative of much in terms of ingestion, surprisingly.
That's wonderful! Congratulations!
My son is actually in this study for his peanut allergies. We've been using the patch for the last month. i'm trying to find others who are also on the patch so we can compare stories and offer advice.
I'm very positive about this test so far.
My son is starting this clinical trial in March. He has recently failed an oral food challenge at our local allergist (he got to 1/4 tsp of peanut butter which is when he reacted with hives, decreased peak flow and sneezing/congestion). He also had a skin prick test of 9mm. I'm concerned that he won't react to the oral food challenge required for the study - approximately 1 peanut. I guess we'll have to wait until the double-blind placebo-controlled food challenge to see if he qualifies.
What were your son's Rast and skin prick test results? How did he react with the oral challenge? I would love to share experiences - assuming my son is accepted. Any info you have would be great! Thanks!
Hello
Sorry I haven't been back but we haven't really done anything about his peanut allergy since his reaction. I am scared to death of giving him any more peanut butter...sort of want to challenge him in the waiting room of the ER!
He had RAST testing that ranged from a high of 62 to 30 on his latest one. No ARA testing done. SPT was done as a toddler and highly positive ..I think greater than 10.
I will be following the others with interest
Hi Corinna,
Just wondering how your little one did at the peanut food challenge. Our story is similar to yours. Our son has proven highly allergic to peanuts, but somehow he was able to tolerate the challenge needed to qualify for the Viaskin study. Everyone was surprised. So, now we are considering challenging him further.
Jenn
My 7 year old son is currently wearing the patch. We are on month 4 now. He should be wearing the patch all day everyday, but it seems he is only able to tolerate an average of 18 hours. IWhen they gave him the food challenge, he threw up on the very first dose. I'm optimistic and hoping this will desensitize him!
:bump:
Do you wear a new patch every day? I'm doing a study on this and can't seem to find that answer anywhere. I would appreciate anyone's help with this. I completely understand what you're going through, I have celiac disease and have done too studies now. They are not fun, but to feel better even for the shortest amount of time is so worth it! :) Thank you!!
I didn't understand any of that, sorry. But the basis is the same for any immunotherapy which is in no way a treatment for celiac. The patch is only a different method for delivery of the allergen for desensitization. It has been fast tracked by the FDA for peanut if somewhere in your post you were inquiring about IgE desense for peanut.