invited to participate in research study
Ok, this will be long, so forgive me up front. I've debated strongly on whether or not to post here. You see, I don't post a lot for fear of getting slammed. I have very few people I can talk to about PA and while sometimes I get scared reading this board I often get very good info. So here goes, and please when you're responding, take into account that I'm bringing this info to you to get your thoughts and see if you have other pros and cons that I hadn't thought of. My DH and I will ultimately make the decision. I also thought you would like to know about this research that is going on.
DS saw Dr. Wesley Burks last week at Duke. He is supposedly in the top 5 of docs working on PA. We were invited to participate in his study (the same one that Brooke, "benmadwood", is doing). Justin's caprast for peanut is a 25.7. Only those w/ a 15+ are entered into the study. Dr. B said w/ a 15+ you have a 95% of reacting to an exposure, and below a 15 the research isn't as clear cut. He also said w/ a 25 he has very little chance of outgrowing on his own (I can't remember what the cut off was for this and I know some of you would like that info...it may have been 15, or 5). We are struggling greatly w/ this decision. Here's how it would work:
First of all, this is made possible b/c Dr. B and other docs isolated the protein(s) in PN that cause the allergy. DS would get an IV (for emergency admin of epi if needed). He would get a tiny amount of peanut flour mixed in something like applesauce and be watched. Each 30 mins the amount would increase until he reaches 50 mg. If no reactions, he would leave, come back the next day and get the 50 mg again. Be watched, then go home. Every day for the next 2 wks we give him 50 mg. Each 2 wks for 3 months we go back and get an increased amount, are watched, and repeat for 2 wks. At the end of 3 mos he should be at the maintenance dose of 300 mg, the amount equivalent to about a peanut. Dr. B said most accidental exposures amount to less than a peanut. We would have blood taken every 3 mos for the remainder of 2 years. The possible outcomes are:
1. no benefit
2. ability to have an accidental exposure w/out a "major" reaction
3. no longer peanut allergic
This is supposedly safer than injections b/c it works in the gut (where reactions initiate I believe)...this is also the way people are "cured" of antibiotic allergies...they "eat" increasing amounts of the med until they no longer react. So far, there have been no serious reactions, w/ the worst being vomiting. No one has had a bad reaction at home, and the ones who did react at the first visit (vomiting) w/ a very small amount of pn flour are not reacting now on the highest maintenance dose.
Let me just say to you that I would not want anything to hurt my son. But it's very tempting to give him the chance to get rid of this constant fear that hangs over our family. The study is free, and we can stop at any point.
My pros are obvious. My cons/questions are the following:
1. what if he has a bad reaction?
2. what if this doesn't work and keeps him from outgrowing (even though we're told he has little chance of that)?
3. how traumatized will he be from having an IV and the blood tests?
4. putting him through this and it doesn't work
5. I will have to drive him 3 hours each way for these appts (the least of my concerns, but it is a factor)
6. It just seems too simple...eat a little peanut flour and get rid of the allergy?
I really hope I get some more pros and cons from you...as I said, I struggled w/ posting this b/c I don't want to be told in effect that I'm a bad mom for even considering this. But when no one else around you has a clue what you're dealing w/, this is the only place where I can come to.
Sorry for the length, but I wanted you all to have all the info I do, so you can give me your thoughts and plus so that you'll know what is going on in the world of PA research.
Thanks in advance,