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.
