What do you do? How will your life change?
I was struck today by the comments on various message boards surrounding Hugh Sampson's statement that food allergy oral tolerance therapies are not ready for prime time. This isn't really surprising — it's something doctors have been saying for some time if you read beyond the sensationalist headlines. Many of the kids in these studies do not achieve true tolerance. They are only able to eat MORE of the allergen. When stressors on the immune system occur (illness, environmental allergies, menses), their desensitization level can change, causing reactions to an amount of the food that was fine just the day before.
However, there's another side to the controversy. If you read the synopsis of the AAAAI discussion about oral tolerance studies, you'll see an important point:
Quality of life in patients on peanut OIT vs. avoidance was remarkably improved - 90% improvement in QOL scores.90% of kids (and presumably their parents) felt that the therapy had helped them to be happier. To fit in better. To live like a "normal" kid.
As my son has gone through the introduction of baked milk, and now the FAHF-2 clinical trial, I've had to confront head-on my fears. As I've indicated in other blog posts, baked milk tolerance is not easy. There are very definitely symptoms. The FAHF-2 dosing has also not been easy so far. My son has low-grade congestion much of the time. A mystery stomach-ache. Are they side effects? If so, how can I do this to him?
Which brings me to that peanut cure. Maybe it will turn out to be FAHF-2. Maybe they'll discover the trick to making oral tolerance more effective. Maybe it will be the peanut patch.
Whatever the cure turns out to be...how much risk are you willing to take? How much discomfort will you tolerate?
We are a VERY risk-adverse community. I am concerned that many parents will simply turn down the opportunity for a cure if it involves even the smallest risk or discomfort. And the odds are, based on what we've experienced so far, that it will involve one or both.
Envision yourself the day after treatment ends. Where would you go? What would you eat? What would it feel like to never have to explain allergies again? To add spontaneity back into your life? To not worry constantly when your child is eating out? Sleeping over? Growing up?
It can be hard to even hope again. It can be even harder to discard the precautions and even phobias we've put in place. But it may be the cost of a cure.
Every young mother faces this dilemma the first time she takes her new baby in for the 2-month check-up. There are risks to vaccines. They are minor, but real. How can I do it to my beloved baby? And yet the benefits are very clear.
The day is coming. There are more clinical trials than ever going on. Are you ready to choose when the cure finally arrives?
Maybe it's already here.
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What would I do the day after "the cure?" Bake with Bob's Red Mill products, because a ton of alternative flours that we'd love to use are made by them, but carry a nut warning. Buy those gluten-free rice flour tortillas that have a nut warning, heck let's just say I'd go through a huge sum of money buying all sorts of foods we've been avoiding "just in case," foods with perfectly safe ingredients that we feel too afraid to take a chance on because somewhere in the manufacturing plant there are nuts. It's driving me batty, truly it is. My daughter has multiple allergies, wheat, egg, milk, peanuts, treenuts, a few seeds. There is so much we can't do because of the fear of traces. The order comes straight from the allergist--don't chance it. But damnit, I feel so conflicted about everything that we deny her. I don't like the eye-rolling from others, either, but gosh, what I wouldn't do to not worry about traces "so much," I'm so tired of fearing her death from a random bite (it's been 11 years now). I would say don't get me started, but obviously it's too late! Thank you for yet another thought provoking post.
ReplyDelete"I am concerned that many parents will simply turn down the opportunity for a cure if it involves even the smallest risk or discomfort." -- Parents don't like to put their children at risk; it's not something unique to allergy community. I would be far more likely to enroll myself in a study to combat shellfish allergy (which I have) then to enroll my daughter in one for peanut allergy. I don't feel that i have the right to risk her safety. Once she is an adult, I would support her, but I just couldn't do it when she is young. Perhaps if my daughter had multiple food allergies - she has a peanut allergy, which is one of the "easier" allergies to deal with - I would feel different, but the risks of an new, unteasted treatment do not outweigh the benefits when we can continue to simply avoid certain foods.
ReplyDeleteI wonder if your opinion will change as your daughter gets older, ElleMo. That several-peanut buffer some parents are getting with these tolerance clinical trials might be the difference between a little reaction and a really bad one. That becomes more important as kids start making their own (sometimes risky) choices.
ReplyDeleteOdd to think about a clinical trial as possibly being the safer decision...but that may be the case, given that most peanut-allergic individuals eventually have an exposure.
My son is on baked milk, and has had several reactions - the last one requiring epi in the ER (probably due to exercise). We stopped for a while, but then the results came out about how those tolerating baked milk DO develop tolerance sooner. He's back on it now, but it took alot of convincing. He only takes it at bedtime so there is no chance of exercise afterwards. I tried to actually get him into one of the baked milk studies in the U.S. but he was rejected due to his RAST being too high. Bottom line - we want to be on the leading edge of a cure. He's old enough and smart enough to know that while some suffering is possible, the end result could be more than we ever dreamed possible...now we just need to find an allergist in our area who's willing to take us on.
ReplyDeleteYou are such an AWESOME bitch! Thank you for writing this article!!!
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