You could say that our family is unlucky. Our eldest son, Theo, was diagnosed with a peanut allergy as a baby. We found out when, on the advice of our paediatrician, we fed him peanut butter when he was nine months old.
He was a healthy baby. He ate everything, and neither my husband nor I have severe food allergies. But a few seconds after tasting a bit of peanut butter from a spoon, he threw up. His doctor told us to try it again when he was a year old, so we did, more nervous this time. He immediately threw up and got hives. A few weeks later, an allergist confirmed it: Theo was severely allergic to peanuts—even the smallest taste could trigger an anaphylactic reaction.
My first thoughts were, Why us? Why him? Was it because I ate peanut butter for breakfast almost every day when I was pregnant? Was it because I didn’t breastfeed past four weeks? But there were no clear answers. And even if there were, what good would it do? Our sweet son was stuck with this deadly allergy, potentially for the rest of his life.
So we lived with EpiPens and food restrictions and the ever-present fear that something he ate could kill him. I became the hyper-vigilant parent, banning peanut butter among family members when we were together and detailing Theo’s allergies for restaurant servers, even when ordering innocuous things like grilled cheese or fruit salad. As often happens in a marriage, my husband compensated for my overbearing behaviour by being more relaxed when it came to food. And, as it turns out, Theo’s only accidental exposures to peanuts—causing no more than an itchy mouth and vomiting, thankfully—happened on my watch.
But I would also say we’re lucky.
By the time I was pregnant with our second, our house and diets had been cleared of peanuts. We had Chester tested at one, and guess what? No allergies at all. Go figure.
It might sound weird, but if you had to pick a kid to have a peanut allergy, you’d probably pick Theo. He was born responsible. From the time he could talk, he always asked whether there were peanuts in his food. He started carrying his EpiPen in a belt at age four. He’s smart and sensitive, and can handle what’s been thrown at him.
But most lucky of all, we happened upon the right research. While vacationing in Florida in 2013, my husband and I read a New York Times Magazine article about allergies that described a Stanford University–based study in which kids ingested minute but increasing amounts of ground food allergens every day to build their immunity. After a few months, the kids were able to eat several thousand milligrams of each allergen at a time with no major reaction. I mentioned the study to Theo’s allergist, and she pointed us to a similar one at McMaster University Health Sciences Centre in Hamilton—just 70 kilometres from our west Toronto home. I emailed the doctor and, within a few months, Theo was accepted into the medical trial.
It’s been a long journey. Theo is now seven and going into grade two. He still brings his EpiPen to school every day, just in case, and he still steers clear of peanuts. But he’s completed the study, and small exposures to peanuts are no longer lethal. He is still considered allergic, but for all intents and purposes, he’s in the clear. Here’s how we got there.
It’s a cold, grey morning when my husband, Theo and I head down the highway to Hamilton for his first daylong food challenge. Theo, who is five, will eat small, measured amounts of peanuts ground into a powder until he has a reaction. This test will establish a baseline for his tolerance. And it scares the hell out of me.
We’ve explained what we know about the study to Theo. He seems to get it, but asks just one question: “Can I be in the study but not do the part about eating peanuts?”
Of course he doesn’t want to eat peanuts. We’ve taught him since age one that peanuts are dangerous to him and can make him very, very sick—and now we’re saying to go for it. But, being the responsible, reasonable kid that he is, he gets on board. We’ve also appealed to his geeky side by telling him that by being in the study, he’ll be helping The Scientists. He likes that.
At first, Theo is excited, full of energy and happy to have everyone’s full attention. He eagerly eats a Dixie cup of chocolate-mint ice cream mixed with a miniscule amount of powder—the equivalent of one-250th of an actual peanut. We watch him, hearts pounding. No reaction. Twenty minutes later, he’s keen to eat more ice cream with double the dose of powder. Still nothing. Then two more servings with gradually more powder. When the nurse asks how he’s feeling, he reports an itchy mouth. Duly noted. We carry on to the next dose. Mouth still itchy. His next dose is one-10th of a peanut.
After ingesting in total about one-fifth of a peanut in three hours, a change comes over Theo. He loses his perkiness. He seems tired and complains of a tummy ache. The nurse tells us this is the reaction they’ve been looking for. Theo lies down on a hospital bed, and I leave him with my husband and the nurses while I grab a sandwich.
In the cafeteria line, I get a text from my husband. “Come back. We’re giving him the Epi.” I run up two flights of stairs and get to Theo’s room just after the deed’s been done. With the nurses’ coaching, Theo injected himself. He held the long, plastic-encased needle-and-drug device at his thigh (over his track pants for speedier delivery), pushed firmly and gave himself the medicine—something we’d never had to do before. The room is the opposite of how I feel: calm and quiet, everyone smiling, with a few tears here and there. We now know his baseline tolerance (about one-fifth of a peanut), we know how to calmly deal with an anaphylactic reaction, and we know Theo can treat himself if he ever needs to. I feel oddly comforted.
Two weeks later, we go back to the hospital for Theo’s first peanut doses. In this study, roughly three-quarters of the kids will receive peanut powder while the remaining quarter, the control group, will unknowingly receive flour. Because it’s a double-blind study, neither the participants’ families nor the medical team know who’s getting what for the first six months. After that, kids in the control group are automatically admitted into the peanut-eating group.
At the hospital, Theo is given a starting dose of powder mixed with ice cream. He has no reaction. The nurse checks his vital signs, and we leave with his supply for the next two weeks: 14 small envelopes, each containing that same dose of peanut powder—or flour. Every morning at breakfast, we mix the contents of an envelope with yogurt or applesauce, wait the recommended one hour for a reaction (which never comes), and then send him off to school.
Two weeks later, we return to the hospital to double his dose. Theo happily eats more ice cream and powder, and we head home with new envelopes for the next two weeks.
It’s going great. Theo’s worked up to one-fifth of a peanut at breakfast every morning and isn’t having any reaction at all. The believer in me has faith it’s working—he’s gradually becoming desensitized!—while my inner skeptic is convinced he’s in the control group, ingesting flour, not nuts.
I broach the concept of a control group with Theo very gently to prepare him as we near the end of the six-month trial. He seems confused and wonders why all the kids wouldn’t just receive peanuts, but he understands that even if he is eating flour now, he’ll be getting the peanuts in a few months. We dutifully continue to mix up the powder every morning and record the date, time and reaction (or lack thereof) in the log pages that the medical team had given us.
He’s done it! Theo’s been eating the study’s maximum dosage—about two peanuts—every day for four weeks. Or has he?
As we head back to Hamilton for another food challenge to confirm whether the therapy has been working, my husband and I remind Theo that it’s possible he hasn’t actually been eating peanuts. He’s comforted by the reminder that he is helping The Scientists. (I think he probably also wants to keep missing school every Thursday morning for another six months.) But even if we are in the control group, the nurses will start him with the real peanuts right away, and in another six months, we’ll be done.
After a challenge of just one-40th of a peanut, Theo’s mouth gets itchy. The nurse orders him to stop right there. She opens a sealed envelope and, sure enough, the official paper inside tells us what we had come to realize: He hasn’t been eating peanuts. He’s still allergic, and we’re coming back for more.
We’re deflated, but happy, because now we know what lies ahead. The nurses are awesome. They congratulate Theo on a job well done and remind him about the important role he’s playing in this study. He seems pretty pleased with himself and is excited to move on to the “real” part.
I’m also secretly pleased about continuing on, because I’ve been enjoying our trips to Hamilton. As a busy parent of two kids, it’s so nice to have this one-on-one time with Theo to chat, play hangman or read. I can tell he relishes the time, too—especially if it includes lunch at McDonald’s or a trip to the shoe store.
We’re totally in the groove. And we can tell it’s working. Every morning when Theo eats his one-250th of peanut, he gets an itchy mouth. After water and a 10-minute wait, the itchiness subsides. Two weeks later, his dose is doubled and he tolerates it—and the increase after that—just as well.
Theo’s school running club is in full swing, but the peanut trial is about to slow him right down. The kids in the study are told to limit physical activity in the hour following their daily peanut dose, as it can exacerbate stomach cramps, a common side effect of the treatment. Theo’s up to about one-30th of a peanut a day, and one fall morning, it catches up to him. He takes off like a jackrabbit with all the other grade one boys, but stops after two minutes, complaining his stomach hurts. It’s a tough call to make, but together we decide Theo should quit the running team and rejoin next year.
Final dosage increase this week, getting Theo to the “maintenance dose” of about two peanuts, where he’ll stay for the foreseeable future. But instead of eating the hospital’s carefully measured powder, the nurse asks us to bring two peanuts to the appointment. Theo palms one salted peanut and one chocolate-covered peanut M&M. Before I know what’s happening, they’re down the hatch. Within seconds, he’s got an itchy mouth, but he’s smiling, victorious.
Who would have thought? Our son: happily eating peanuts.
He returns to school and explains to his teacher and friends what he’s done. They’ve been cheering him on all the way, and I’m often stopped at school by parents who want to know how he’s doing. He’s so proud of himself, and I am deeply relieved. Though it’s not quite over.
Off to the hospital for a final food challenge, and it’s a doozy. The medical team is really trying to push the participants, asking them to eat gradually increasing powder doses, working up to the equivalent of four peanuts over a few hours (for research purposes, they want to see how much beyond the maintenance dose the kids can tolerate). Theo makes it to three peanuts before the effects set in: wooziness and a stomach ache. I ask the nurse if we can monitor him for five minutes before injecting the epinephrine. She says no; these symptoms mean he’s only going to get worse. She says it’s my turn to inject him, which I’ve never had to do. I am openly needle- and blood-phobic, but I muster up my courage, hold Theo’s hand with one of mine and, as gently as possible with the other, poke him right through his pants. We both cry. Within minutes, he feels better, and so do I. He recovers in the hospital for a few hours (to ensure he doesn’t have another reaction) before we leave, tired and happy.
That’s it. No big party. No certificate of peanut tolerance. Just two peanuts every day with breakfast for the foreseeable future. If Theo stops eating them, his immunity will likely decrease, and he’ll be at risk again. He’s not cured and probably never will be. But if he bites into a peanut butter cookie by accident, he’ll recognize the taste, stop eating and won’t have a reaction.
He now carries his EpiPen in his knapsack instead of around his waist, and we’re all more relaxed at restaurants. I’m so proud of Theo for sticking with this program—including blood tests, fecal samples, and missing school and sports—and, frankly, proud of my husband and myself for making him do it.
But I feel guilt, too. Just as I asked myself, Why us? when Theo was diagnosed, I ask it again now that he’s built up his immunity to peanuts. What about all the families who don’t have access to a program like this?
I can only hope that this study is a success and one day, all nut-allergic kids might be able to follow this protocol—and get lucky like us, too.
Don’t try this at home
The McMaster University Health Sciences Centre’s peanut allergy study is the only one of its kind in Canada, though Toronto’s Hospital for Sick Children is planning a desensitization study to begin later this year. McMaster is not recruiting any new patients. Data analysis is under way, and results are expected fall 2016. Procedures for these studies are patient-specific and should never be attempted at home.
A version of this article appeared in our September 2015 issue with the headline “The big peanut gamble,” pp. 35-7.