By Kelley
Lindberg
Because of some discussions that took place
on FaceBook after my first OIT post, today I will share the concerns I had going
into this new treatment for my son’s food allergies.
My first
post two weeks ago about my son’s journey with Oral Immunotherapy (OIT) for his
food allergy to peanuts sparked a lot of interest (“Searching for a Food Allergy Treatment—Our OIT Journey Begins.”) Of course people are
interested—this is a new therapy for food allergy that might represent a
possible way to reduce a person’s reactions to a food allergen. Since experts
estimate that 1 out of every 12-20 kids in American has a severe food allergy,
a treatment that would lessen or eliminate the threat of a life-endangering
reaction to food would benefit millions of people.
So, as I
mentioned in that first post, I’ve been watching medical studies for years. As
my son approaches his college years, I’ve been hoping one of the many possible
therapies currently being developed makes it through trials and gets far enough
along in its progress to offer me some hope for him before he’s off on his own,
eating in college dorms and living with roommates. So when my allergist began
offering OIT in his office, I was interested.
I was not,
however, quick to jump on the bandwagon. In fact, even though I’d been begging
our allergist for years to keep my son in mind if he ever began implementing a
treatment protocol, when he finally approached me, I said “No, thank you.” I
felt that the treatment was still too new and that there were too many
unanswered questions and risks.
Now more
than a year has passed, and although I still have questions and worries, my son
and I decided enough data is being accumulated and enough patients have been
through the process nationwide that we were willing to consider it.
I want to
share my concerns, however. My goal with blogging about our journey is NOT to
become an evangelist for OIT. It is to share our unique experience, adding our
personal observations, successes, setbacks, worries, and other personal views
to the growing body of information out there, so that others who are interested
can see one more perspective.
To start
with, I thought I should share my concerns, which explain why we waited over a
year before we signed up for OIT.
I am very
cautious when it comes to my son’s life. (Go figure, right?) While peanuts and
tree nuts represent life-threatening dangers to him, we’ve also become REALLY
good at managing those allergies by strict avoidance. In 16 years, he
has had only 2 minor reactions as a toddler (which were how we discovered his
allergies) and one minor reaction on an airplane two years ago. We’ve never had
to use an emergency epinephrine auto-injector (EpiPen). We’ve been far more
vigilant than some might think is necessary, but it’s worked for us almost
perfectly. We’ve avoided foods with “made in a factory with” warnings. We’ve
talked to every teacher, soccer coach, and friend. We carry EpiPens everywhere
we go. We’ve used an abundance of caution, and we’ve been very lucky so far.
Of course,
accidents happen, and while the temptation to say “We’ve been doing fine so
far, why change things” is strong, I know a big change is on our
horizon—college. When he goes to college, I won’t be there to remind him, cook
for him, or notice those first signs of a reaction that only moms can see. So
“the way we’ve always done it” is going to change, and I won’t have any control
over that.
So I want
reassurance that my son’s life will be safe when I’m not around. But that
doesn’t mean I’m convinced OIT will be the answer. I’m hopeful, but not blindly
so.
The first
caution to note is that OIT is currently not recommended by official medical
associations. A growing number of individual physicians are offering this
treatment in their offices, but make no mistake—it is NOT an officially
sanctioned treatment. That carries a lot of weight. I had to do my own research
to reassure myself that enough doctors are doing this now, and have been doing
it long enough to show documented success, that I feel comfortable with the
practice. Medical associations will take a much longer time and require even
more well-documented and tightly managed studies before they approve of it. I
had to be comfortable with moving forward without that reassurance, and let me
tell you, that’s WAAAAAYYYY out of my comfort zone.
Next, this
treatment doesn’t prove successful for everyone. Our allergist and others like
him who are sharing information and protocols with each other are claiming a
success rate of 85 – 90%. That’s very encouraging, but it still means 10 – 15%
of the people who try it won’t make it to the end of the treatment cycle and
therefore won’t be protected from their food allergen. That’s a lot of time, effort,
and money to risk on a gamble, even with pretty good odds.
A third big
hurdle for me was a study that linked OIT to the development of possible
eosinophilic esophagitis (EoE) disorders. EoE disorders are a different type of
allergic reaction in the esophagus and digestive tract that can cause
significant health issues. I didn’t want to trade my son’s known allergies,
which we know how to manage, for a potentially worse disease. But I also learned
about a study that shows a small percentage of kids who naturally outgrow their
food allergies can develop EoE to that same food years later. (See the article “Those Who Outgrow Food Allergy Can Risk EoE” on Allergic
Living magazine’s website.) The study’s researchers
speculate that the kids who develop EoE (10-15% of the kids who outgrew their
allergies) may have had EoE to begin with, and the disease was hidden because
they were avoiding the food. When they outgrew the allergy and began to eat it
again, perhaps that’s when the EoE symptoms were triggered. So even if my son
outgrew his peanut and tree nut allergies on his own, he might still run the
risk of developing EoE. Also, my allergist explained that in talking with other
allergists about these possible links between OIT and EoE, the allergist are
occasionally seeing EoE symptoms begin to emerge, but they immediately stop the
OIT treatment and the EoE symptoms disappear. As he explained it to me, their
observations show that when they stop the OIT, the patient reverts to their
original allergies, and the EoE symptoms go away and do NOT progress into
full-blown EoE disease. So the patient is ultimately no worse, albeit no
better, than when they started. However, this is only anecdotal experience, and
only large-scale, long-term studies will definitively illuminate the link
between eliminating food allergies (whether through OIT, SLIT, a future
treatment we don’t even know about yet, or by naturally out-growing them) and
EoE. Those studies may be on the horizon, but they’re not here yet. So we’re
flying a little bit in the dark as far as this risk goes.
Fourth, OIT
is an expensive and lengthy process. We have to realize going in that we’ll be
committed to this process for a minimum of 6 months of weekly appointments,
probably more. And the dosing is twice a day, every day. We are very fortunate
that our allergist is in our health insurance network, so we pay the specialist
co-pay for every weekly appointment, plus additional fees for the peanut
solution and any other tests or expenses we incur. Many people aren’t so lucky.
Either they don’t have health insurance at all, or their chosen allergist is
out-of-network, meaning they must pay a higher percentage of their medical
bills for the weekly appointments. We’re talking thousands of dollars here for
some folks. And that doesn’t include the costs some people incur when they live
far from their allergist and choose to either relocate or fly or drive round-trip
to their appointments every week.
Fifth, the
treatment process requires us to adhere to a very regimented schedule. We’re
not a highly regimented family. We like to be spontaneous. Dinnertime can be
anywhere from 5:30 to 9:00, depending on what we’ve got going on that day. And
my son is right in the middle of that social whirlwind called “the teenage
years.” As part of the treatment, he must be dosed with peanut solution after
breakfast and after dinner every day. And he must refrain from physical
activity that can raise his body temperature (which increases his risk of a
reaction) for 30 minutes before and 2 hours after those doses. That means he
can’t inhale his breakfast and rush off to the swimming pool to clown around
with friends. He can’t wolf down dinner, then immediately long-board with
friends to the skatepark. And last weekend, only a week-and-a-half into his
treatment program, he had to miss out on a weekend with his best friends at a
lake cabin because I need to make sure he’s dosing at the right times and that
he’s close to emergency medical help if he needs it. He’s having to confine his
physical activity to the middle-of-the-day hours and curtail some of his social
activities, and that’s hard.
Sixth, after
we go through the 6+ months of treatment, we’re not finished. We’ll never be
finished. Right now, patients who complete OIT are committed to having to eat a
“maintenance” dose of their food allergen every day for, potentially, the rest
of their lives. So while for some of us, having to eat a handful of peanut
M&Ms every day for the rest of our lives doesn’t seem like a bad thing,
what if he hates peanuts? Being told you have to eat a food you hate every day
for the rest of your life, just so you don’t run the risk of becoming allergic
again and having a life-threatening reaction, can seem like a cure that’s
nearly as bad as the disease, right? Maybe someday there will be new data that
shows OIT conveys longer-term protection than it now appears, or maybe a new
treatment will cure these patients once and for all of their allergies, but
until then, my son will be eating a handful of peanuts (or peanut butter) every
day, whether he likes it or not. And currently, the recommendation is that
these “cured” patients continue to carry EpiPens, “just in case.”
So, was this
an easy decision for us? No, definitely not. So why did we choose to do OIT
despite all of these hefty concerns?
Because we
made the decision as a family—and my son had ultimate veto power—that the risks
and inconveniences were worth the possible outcome. To live his life unafraid
of that accidental exposure, to be able to kiss a girl without interrogating
her about her last 2 meals, to be able to go with friends to a Mexican or
Chinese restaurant without being left home, to go on a vacation without
worrying about how many hours away he’ll be from medical help if he goes into
anaphylaxis… all of those are goals we decided are worth pursuing.
Only time
will tell if we made the right decision. But it feels right for us, for now.
And for
those of you following along on our OIT journey, we had a wonderfully
uneventful week, with no reactions at all after his up-dosing last week (now at
5 mg of peanut flour, which contains 2 mg of actual peanut protein). And the
question I know is on everyone’s mind? This week’s Kool-Aid flavor for the peanut solution is Fruit
Punch!
