6 Reasons Why I Almost Didn’t Pursue OIT for My Son’s Food Allergies

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!

Searching for a Food Allergy Treatment—Our OIT Journey Begins

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.

New Food Allergy Treatment on the Horizon?

By Kelley Lindberg

Dr. Fred Finkelman
(photo courtesy of FARE)

FARE (Food Allergy Research and Education) is reporting today that they’re awarding a $734,986 research grant to leading immunologist Fred Finkelman, M.D., at the University of Cincinnati College of Medicine/Cincinnati Children’s Hospital Medical Center, in his efforts to suppress anaphylaxis. Dr. Finkelman is developing a therapy that may be able to desensitize a patient to ALL of their food allergies at the same time, and potentially in as short a time period as 24 hours.

With this therapy, a patient would probably be injected with a unique antibody that Finkelman and his team have developed in their lab. The antibody would then target mast cells and remove the IgE and IgE receptors on those mast cells, which are responsible for releasing the chemicals that cause the symptoms of an allergic reaction. In a previous study, Dr. Finkelman injected mice with this antibody, and the treatment prevented anaphylaxis.

In plain English, this means that after being injected with this new antibody, the patient’s body will stop reacting to food allergens!

Right now, Dr. Finkelman and his team are still working with mice, so human trials are still years away. And their therapy in mice has taken weeks to build up a resistance, so they are hoping to shorten that timeframe significantly with their future study. Dr. Finkelman emphasizes that his process would not cure allergies, but would suppress allergies. He believes it has the potential to suppress food allergies, skin allergies, and even asthma and environmental allergies (hay fever). But this is the type of therapy that so many of us are desperately hoping for, so I am thrilled and grateful to FARE for supporting Dr. Finkelman’s research with this significant grant.

To read more about this grant and Dr. Finkelman’s work, check out these links:

• “New Study Aims for Quick Suppression of Food Allergies”
• “A Conversation with FARE Grant Recipient Fred Finkelman,MD”
• “Suppressing Food Allergies Quickly Is the Goal of UC Research Team”

New York Times Magazine: “The Allergy Buster”

by Kelley Lindberg

"Your child is always playing near a precipice that is visible only to you: you may be able to keep her from falling off, but you can never move her away from the edge.” --Melanie Thernstrom, "The Allergy Buster"

A cure. That’s what we want. It’s what millions of kids (and millions more adults) need. Is there one tantalizingly close? It looks more and more like that answer could be “yes.”

 

Oral desensitization is one of the most promising treatments for food allergies being studied today. By introducing a carefully measured, incredibly tiny amount of the allergen every day, increasing it slightly at specific intervals over the course of several years, researchers are demonstrating that many of their patients are eventually able to tolerate the food allergen safely.

 

However, it’s not as easy as it sounds. The amounts must be carefully measured – not something you can do in your own kitchen with a blender and a measuring spoon. Many patients in these studies still have anaphylactic reactions to the dosage and must be treated with epinephrine shots, steroids, and antihistamines. The patients have to carefully control their activity level after taking the dose, because increased body heat can trigger reactions. Timing, commitment, control, and monitoring are essential so that the treatment doesn’t become the trigger for a life-threatening reaction.

 

And after several years of treatment, when the patient appears to be “cured,” the understanding now is that he or she will have to eat that allergen every single day to prevent the allergy from returning. For a nut, that could be a serving of 16 nuts every day. If it turns out you don’t actually enjoy the taste of that food, that could be a difficult life sentence to face.

 

But despite the downsides, oral desensitization is still the most exciting possibility for a cure on the horizon, and it’s one that many of us are anxiously awaiting. I desperately want my son to be able to go to college and leave his food allergies safely behind. So I was very encouraged to read this informative and thought-provoking article by Melanie Thernstrom on the New York Times Magazine website: “TheAllergy Buster: Can a Radical New Treatment Save Children With Severe FoodAllergies?”

 

Thernstrom talks about a trial her son in participating in that is going beyond the single-allergen desensitization method to multiple-allergy desensitization. The article is long, but well worth the time to read.

 

That light at the end of the tunnel may be getting closer after all.

 

 

Signs of a Food Allergy Reaction

by Kelley Lindberg


How do you know if someone is having an allergic reaction to a food?

Knowing the most common signs of a reaction can help you identify it correctly. Here are the most common symptoms to look for in a food allergy reaction, according to the Food Allergy and Anaphylaxis Network (FAAN):

• A tingling sensation in the mouth
• Swelling of the tongue and the throat
• Difficulty breathing
• Hives
• Vomiting
• Abdominal cramps
• Diarrhea
• Drop in blood pressure
• Loss of consciousness

Typically, symptoms appear within minutes of eating the food, but sometimes it can take up to two hours for symptoms to appear.

Don’t expect to see all of those reactions at the same time. Many reactions may only display one or two of those symptoms. If you spend a lot of time with someone who has food allergies (such as a student in your class, a co-worker, or a scout in your troop), ask what their most common symptoms are and watch for those. But beware – allergic symptoms can vary from episode to episode, so try to be familiar with all the symptoms and watch for them.

Parents are usually the best at reading the early signs of a reaction, of course. For example, my son’s friend often gets itchy spots on the back of his neck as the first sign of an allergic reaction. That’s the kind of thing a stranger probably wouldn’t notice, but his mother can see that little tell-tale before anyone else can. But her son’s reaction can rapidly progress to include cramping, a rash near his mouth, welts if there was skin contact, or vomiting. All of these are signs I know to watch for if he’s staying at our house. They’re also signs I watch for in any child, now that I know they are common food allergy symptoms. Even if you don’t know someone well, being familiar with all the signs of an allergic reaction can help you identify what might be happening.

Now that you know what to look for, what do you do if you suspect someone is having a reaction? It’s pretty simple:

1. Administer the person’s medication immediately. Usually you give them an antihistamine first (Benadryl, Allegra, Zyrtec, Claratin, etc.). If the symptoms get worse, administer the person’s epinephrine injection (EpiPen, Twinject, or Adrenaclick). Don’t worry, The instructions are usually printed right on the injector.
2. Call 911 or a doctor and tell them you believe the victim is having an allergic reaction to food. Tell them what medicine you gave them.
3. Get the person to medical help, and stay with them and watch them for 24 hours (even if they’re sent home). As the medication wears off, the reaction can come back, so it’s important to watch them for recurrences.

With some extremely sensitive people, it’s critical to immediately administer epinephrine without waiting to see if an antihistamine works. If the victim tells you to use the epinephrine right away, don’t hesitate.

Remember, I’m not a medical professional, so don’t take this information as medical advice – I’m just giving you some tips. Talk to your own allergist or medical provider for information specific to your own condition. And for more information about food allergies, their symptoms, their treatment, and other aspects, see FAAN’s website, http://www.foodallergy.org/. For information on epinephrine injectors, see http://www.epipen.com/, http://www.twinject.com/, or http://www.adrenaclick.com/.