Some say a parent’s biggest challenge is keeping their child safe. But when a child has a severe food allergy, that job can get even more complicated.
“It’s exhausting. Sometimes you feel like you have to be five steps ahead,” said Colwood resident Tanya Gesslein, whose seven-year-old son, Isaiah, was diagnosed with a peanut allergy about a year and a half ago. “It’s always there, you’re always a bit scared. It makes me sick to my stomach sometimes.”
In hopes of relieving some of that pressure and gaining another level of protection, they are traveling back and forth to Vancouver to participate in a peanut allergy study at B.C. Children’s Hospital. While the family of four turns the trips into a fun adventure, Isaiah is always at risk of being accidentally exposed to peanuts.
On a recent trip, Gesslein recalled, Isaiah and five-year-old brother, Silas, were playing in the arcade on the ferry. “I look down and I see a peanut on the floor and my heart immediately sinks,” she said.
Gesslein does her best to keep such knowledge to herself and not let her children see her fear. While the boys play, she’s picturing someone sitting on the machine before them, eating a candy bar and touching the steering wheel. She calmly lets them finish their game before sending the boys to wash their hands.
“We don’t eat out … The risk isn’t worth it for us,” she said. When the family travels to Vancouver, they pack all of their own meals. “That’s just the way it is … you deal with it.”
Protecting Isaiah and others against accidental ingestion is exactly what Dr. Edmond Chan, head of B.C. Children’s Hospital’s allergy and immunology department, is hoping to accomplish.
“Most children don’t lose their peanut allergy, they don’t outgrow it,” he said. The hope is that by exposing those with the allergy to small amounts of peanuts, it will gradually increase their tolerance. What sets this trial apart from others, is that participants are exposed to peanuts through a patch on their skin and don’t have to take them orally.
While administering peanuts to the system through the skin hasn’t proven to be as effective as eating them as a therapeutic method, Chan said the latter approach “carries with it a greater chance of anaphylaxis.” The topical application, which patients can administer on their own at home, would be a lot easier to put into practice, he said, as patients being treated orally must have a licensed professional nearby in case of a severe reaction.
While the trial is a “world-wide, multi-centre study,” Chan said B.C.’s Children’s Hospital is the only location in Western Canada participating. Isaiah is one of seven children undergoing the trial in Vancouver.
“The first phase showed that it’s safe,” Chan said, adding “phase two studies did show some effect.” In phase three, the trial will see participants go through a year of wearing the patch, for increasingly longer periods of time, with some receiving placebo patches. After the first year, Isaiah and the others will undergo an extensive follow-up to measure any increased tolerance to peanuts.
“After that it will be open label,” the doctor said, meaning all of those in the trial – including the placebo group – can continue on with the real patch for an additional two years with more assessments.
The goal is that after 12 months of treatment, patients that have been wearing the patch will be able to go from tolerating one-third of a teaspoon or less of peanuts to one teaspoon, without a severe reaction. While it won’t allow those with the allergy to eat peanuts freely, it will give them a safeguard against accidental ingestion.
“Most of us would consider that fairly successful,” Chan noted. “It’s going to help those that find it very stressful and difficult to avoid peanuts … They live in constant fear of having those reactions and they find it very restricting.”
To participate in the study, patients had to go through a baseline oral food challenge, eating peanuts in front of Chan and his team, so they could measure the reaction and confirm the allergy. “That’s a very stressful event for the family,” he said, but a necessary one, as the complexities of being diagnosed with a food allergy make scratch and blood tests unreliable.
He noted there could be a more than 50-per-cent chance that a test comes back with a false positive. Although, he said, the tests are incredibly accurate when there is a negative result. “Only when it’s done in front of us will we know for sure.”
While Gesslein said the food challenge was hard, it was actually somewhat of a relief. “He ended up having to (use) the EpiPen which was kind of good because we haven’t had to use one.” While Isaiah said the pen hurt a little bit, Gesslein said it put him at ease because that was his biggest fear, not knowing how much it would hurt.
“It was actually pretty amazing,” she said. It happened so quick and he was back to his normal self, playing with Lego. Since using the patch, Isaiah has experienced a few minor skin irritations, but Gesslein said they cleared up right away with some hydrocortisone cream. In fact, those little reactions give her hope that Isaiah is receiving the real patch and not a placebo. “There’s a chance he could be getting the placebo and he’s not getting anything,” she said, her face falling a bit at the thought. But, she added, “worst-case scenario he’s a year behind.”
Gesslein has researched various trials since Isaiah was diagnosed. When she read about the peanut patch, she told her husband that if it was ever available, they would jump at the opportunity. She was even willing to relocate to New York, where the couple has family, to be able to have Isaiah participate in the trials.
It was by chance that Gesslein stumbled across the trial at B.C. Children’s Hospital: she periodically checks a website listing trial locations and happened to see it at the right time. “We feel so fortunate to be part of it … I really want other parents to know. You feel helpless and this gives us a little hope.”