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!