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Building resilience: From anaphylaxis to ice cream

Two years ago, a simple grilled cheese sandwich could’ve killed Shaan. Today, it’s one of his favourite foods.  But the road to get there wasn’t easy, for him or his family.

Before his second birthday, Shaan, now 10, had already been diagnosed with asthma and allergies to eggs, wheat, and gluten. A few years later he had his first anaphylactic reaction in a Collingwood restaurant. The staff assured the family his dish had no dairy or wheat. They were wrong.  “We learned about cross-contamination pretty quickly,” says his mother, Bindu.

 After that incident, Bindu and Shaan’s father learned to manage his many allergies, but it took a lot of planning and a toll on his social life. After playing hockey Shaan had to bring his own food to post-game dinners. At birthday parties, he skipped the cake. It wasn’t devastating, but he felt left out. So, when his mother approached him about participating in the milk oral immunotherapy (OIT) study at SickKids, Shaan was game. But he was nervous, too—to be eligible for the study, Shaan had to prove that he was allergic to milk. And that meant deliberately inducing a reaction.

So, on that first day at SickKids, as his mother and the doctors watched, Shaan began to drink. At two millimetres, he was fine. At four, he grew uncomfortable. At 10, he vomited. His skin started itching and he struggled to breathe—he was having an anaphylactic reaction. With his head spinning, Shaan thought the same thing over and over: “Make it stop.” A moment later, a doctor administered an EpiPen and he was fine. Although he was never in any real danger, the experience left him shaken and scared. But he decided to press on. “I wanted to get rid of it,” Shaan says.

Now eligible, the youngster began his OIT journey in earnest. To pass, he’d have to eventually drink 300ml of milk in a single sitting, but that first night he began with less than one. Still, Bindu was nervous. She’d helped Shaan avoid milk almost all his life. Now she was feeding it to him. To ease her anxiety, Bindu called Dr. Julia Upton, the co-investigator of the study at SickKids. Dr. Upton stayed on the line as Bindu gave her real-time updates. “It was fine, but we were on edge,” says Bindu.

From there, Shaan’s progress was slow and steady. It also required a lot of planning. As Dr. Upton explained, for OIT participants, the energy and preparation that usually goes into avoiding the allergen is redirected towards safely consuming it. Dosage timing was particularly tricky with Shaan’s hockey games and practices. (Exercise, especially for asthmatics, increases the likelihood of an allergic reaction.)

Finally, after almost a year of nightly dosages and multiple blood tests at SickKids, Shaan made it to 300ml. Now, he can enjoy bowls of ice cream and gluten-free grilled cheese sandwiches. He can even eat Chipotle, a family favourite. Still, it’s not quite a cure, at least not yet. “It’s a lot of work and a lot of maintenance going forward,” Bindu says. “But I think for him, and as a family, the rewards have been substantial.”

While optimistic about the future of OIT, Dr. Upton cautions that it’s not yet a feasible strategy for the wider public. It requires too much engagement from doctors and families and, like Shaan, 30 per cent of children with allergies have more than one. So even with milk eliminated, they still have to read every ingredient and watch everything they eat.

However, there is hope for a multiple allergy OIT study, which could target many allergies at once. In fact, Dr. Upton already has two such studies in development with Dr. Thomas Eiwegger. “That would be the dream,” Bindu says

Reprinted with permission from sickkidsfoundation.com.

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