Trailblazing Kids Desensitize to Dairy Allergy
From the Allergic Living archives. First published in the magazine in 2009.
In May 2008, kindergarten pupil Ethan Johnston had a frightening anaphylactic reaction to yogurt when a dribble of a classmate’s snack splashed onto his lunch. Yet, incredibly, these days, Ethan drinks a milkshake every evening before bedtime at his home in Camrose, Alberta. How can this be? The 7-year-old, who still doesn’t even like the taste of milk, is a participant in a groundbreaking program that three allergists at the University of Alberta have adapted from an experimental therapy developed by Italian researchers.
“I can’t believe it,” says Kristie Johnston, Ethan’s mom. “A year ago, he had anaphylaxis to milk, and now he’s drinking milk straight.”
Ethan is a patient of pediatric allergist Dr. Stuart Carr. In late 2007, Carr and Edmonton colleagues Dr. Timothy Vander Leek and Dr. Per Lidman began offering milk desensitization treatment, also called oral immunotherapy, to young patients who have a serious allergy to cow’s milk.
The aim is to build up tolerance to dairy protein through the consumption of precisely measured, slowly increasing doses over a period of at least six months. It starts with just one drop of a diluted milk solution.
Ethan’s success story is shared by most of the 20 patients taking part in the Edmonton milk therapy. But when speaking to the families involved, it becomes clear that this breakthrough allergy treatment comes with significant hurdles, with the most daunting being the emotional challenges of desensitization.
After all, these children are purposely swallowing (albeit in tiny amounts) a food known to cause them severe and frightening allergic reactions. “The psychological aspect of this is profound,” says Stephanie Wanner, whose 5-year-old son Josh Bjorndahl began the dairy treatment in January.
Josh had his initial oral challenge in Dr. Timothy Vander Leek’s office. “I felt horrible because I knew he was going to react,” says Wanner. Sure enough, the boy drank one millilitre of milk, and hives immediately popped up on his skin, he vomited, and the doctor gave him a shot of adrenaline within a minute.
Yet, less than a month later, Josh was able to start taking small, diluted milk doses at home. With those doses, the boy’s main side effect was an itchy mouth, but that eventually disappeared. Then, three months into the regime, Josh’s stomach began to hurt after taking his daily milk dose.
“He would cry about his sore tummy. Then you feel the guilt and wonder, ‘Am I doing the right thing?’” says his mother. “To have him sit in your lap and cry, you need to be committed. If you can’t handle that and still go on, there’s no point in starting.”
The beginning was by far the worst. But as Josh progressed to slightly higher doses, “the more he became motivated. He was starting to see the effects,” says Wanner.
Parents of dairy-allergic children are jumping at the chance to try milk desensitization when Carr offers it. There is much appeal in the thought of dispensing with the constant worry of a reaction and the challenges of avoiding dairy. The children, however, who’ve only known a life of avoiding their allergens, often take more convincing. Josh had to be coaxed to try cow’s milk.
When Cathy Bradstreet of Slave Lake arrived at Carr’s office with her son Luke Broad in tow, the boy adamantly refused the first dose of milk. Memories of a bad reaction to cashews at age 6 ran through the 8-year-old’s mind. “It took me, Dr. Carr, his father, and the secretary about half an hour to talk him into doing it,” Bradstreet says. “It was the thought of having to have a big needle in his leg, I suppose.”
His parents reassured the lad, noting that if the allergist thought it was safe to try, it probably was. Reluctantly, Luke stuck out his tongue and let Carr put a drop of milk on it. When Luke showed no sign of reaction, his family took him to the famous West Edmonton Mall as a reward.
By July, Luke was taking two millilitres (almost half a teaspoon) of milk a day. Staying on track with the daily doses in those first six months is crucial to this treatment’s success, and a challenge.
To persuade often reluctant kids to abide by the routine, their parents have been telling them they have to stick with it if they want a chance of losing the dairy allergy. Some moms dangle the carrot of new foods – “you’ll probably be able to eat ice cream”; “there will be cheese and yogurt” – but only “if you take your milk doses and build your tolerance”.
If it can be hard for kids to start taking an allergen, and with side effects tough on the whole family, is dairy desensitization worth it? The answer from the mothers Allergic Living spoke to was a unanimous “yes.” Even for the kids who now tolerate just a couple millilitres of milk, the therapy is already changing the life these families have known.