By Kelley Lindberg
|That's my goal: Stay calm while we try to|
re-train my son's body to tolerate peanuts.
My son is two years away from starting college. When he was first diagnosed with allergies to peanuts and tree nuts 15 years ago, there was very little information available out there, and almost no support for parents of newly diagnosed kids. Fortunately for me, I immediately found a friend in the same boat, whose child had also just been diagnosed. (Quick aside: If I could grant the world a wish, it would be that everyone had a wonderful friend like Kim by their side!) Then together we discovered the Food Allergy and Anaphylaxis Network (now called Food Allergy Research & Education, or FARE), and that was our first lifeline to information we could use to make life more “normal” for our kids.
As the years went by, awareness, resources, and information began to proliferate. Now there are hundreds of cookbooks, a bazillion websites and blogs, educational programs for teachers and caregivers, support groups in every state, restaurants that “get it,” and online and real-world communities where we can share our stories and help each other navigate the world of food allergies.
The one thing there hasn’t been is a scientifically vetted treatment for food allergies.
There have been lots of studies, lots of possibilities pursued, lots of theories, and lots of attempts. Several are still ongoing. Many more have been abandoned because they just didn’t work the way researchers hoped. But as all this research has been discussed over the years, my one hope was that some kind of treatment would finally be available to patients before my son went away to college.
For 15 years, we’ve managed his food allergies by the only method available—strict avoidance of the allergens. And we’ve worked hard at it. We avoid foods that say “made in the same factory as foods containing nut products.” We read every label. We carry EpiPens at all times. We train teachers, soccer coaches, friends, and relatives. We work with the schools to raise awareness and minimize risk for not just my son, but for all the other students with allergies, too. I’ve maintained this blog for years, and I was on the board of the Utah Food Allergy Network (UFAN) for 5 years (and I’m still an active member!), sharing information to make other families’ lives easier.
And still I hoped for a treatment that would protect him when he goes away to college. But every year, college got closer and treatments seemed to get farther away.
But then a spark of hope. My son’s allergist told us he’s part of a nationwide network of providers offering an early program of Oral Immunotherapy (OIT), where the allergen is introduced in a tightly controlled, carefully measured manner over a period of many months, in an effort to slowly desensitize the body to that allergen. I’ve been reading about this treatment for years, watching to see if it fulfills the promise shown early on. After helping develop a protocol for this treatment and after a year of conducting this treatment on patients in his office, my son’s allergist says he’s seeing success rates of 85-90%.
I wasn’t an easy sell. I’ve also been watching the research concerning various other treatments, including one derived from a Chinese herbal remedy (Food Allergy Herbal Formula-2, called FAHF-2), a desensitization treatment that introduces peanut proteins through a patch on the skin, and a desensitization treatment where the protein is administered under the tongue (sublingual immunotherapy, SLIT). And I’ve been watching the side effects and failure rates of different treatments. So far, while not a perfect solution, OIT research seems to be showing strong success rates and is closer to wide-spread use than some of the other treatments. So as my self-imposed college deadline looms, I asked my son if he was willing to do OIT.
After many conversations and much soul-searching, we decided this felt like the right time and the right decision for our family. If he were younger, I might have held off, waiting for more of the other treatments to become more established. But those may remain options for the future if OIT doesn’t work for him. And there’s no guarantee it will work. He could be in the 10-15% for whom it doesn’t work. But if we don’t try, we’ll never know. And we’ve decided the end-goal of being able to eat in a university cafeteria, hang out with friends, and live with roommates without the constant worry of accidental exposure is worth the risk.
So we decided to go for it.
Last week, we started the treatment. I’ve been taking notes as we go, and starting next week, I plan to post my observations and thoughts so that others can see what our OIT journey is like for us, and what’s involved at each step.
If you’re interested, I hope you’ll join us on our journey.