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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