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.
Although Josh has several other food allergies – eggs, nuts, peanuts, fish and peas – Stephanie Wanner was relieved, even in the early going, that her son was suddenly protected against trace exposures to dairy products. Recently, Josh completed the desensitization therapy, and is continuing on a maintenace level of at least 200 millilitres (just under a cup) of milk every day.
Wanner finds it an “absolute joy” to see her son included at food-centric events like birthday parties. Dairy tolerance has also eased grocery shopping frustrations. For the past five years, she has been shopping at five different grocery stores to find bread, margarine and soy products that don’t have dairy “may contain” warnings on the label. That level of absolute avoidance, “makes you crazy,” she says.
Ethan Johnston has also finished his course of milk treatment, which took seven months, and this graduation of sorts has changed his relationship with dairy, likely forever. He regularly eats products containing dairy, and drinks a daily milk dose of about 200 millilitres, usually in a milkshake.
“Desensitization has made a huge, huge difference in our lives,” Kristie Johnston says. “I would totally recommend it for anybody it’s safe for.” Gone are the days of Johnston baking Ethan-safe cupcakes for birthday parties, or grilling the chef about cross-contamination during a family outing to a restaurant.
The milk treatment has also simplified life for the Broad-Bradstreet family. Luke isn’t downing glasses of milk yet, but the half teaspoon that he can consume safely is a huge leap for a kid who ate a Cheezie at nine months – and swelled like he’d been beaten up.
His mother is now comfortable buying products that “may contain” traces of milk. And there are the subtle big steps forward – like being able to eat a cucumber sitting beside a slice of cheese on a plate.
Bradstreet is dreaming of the freedoms greater tolerance could bring. “Wouldn’t it be great if in three years, when Luke is 11- or 12-years-old, we can go on a vacation to DisneyLand? Wouldn’t that be wonderful?”
Dairy desensitization ended up coming to Edmonton after allergists Carr and Lidman heard about the results of that 2004 study out of Rome. Investigating the research further, they were eager to try milk desensitizing – beginning with child subjects known to be anaphylactic to dairy.
“Those are the patients who need our protection, and this is the only protection we can offer right now,” Carr says. (The only other “treatment” for this allergy is total avoidance of dairy, and carrying an auto-injector for protection.)
In the Italian study, 15 of 21 children who took the milk doses were able to drink 200 millilitres without reacting within six months. Three more could tolerate some milk – which still protected them from small accidental exposures. Almost five years later, 13 of the 21 children remained fully tolerant of dairy.
The therapy may not work for everybody, but an initial 70 per cent success rate is nothing to sneeze at, Carr says. “If we were only successful in one out of 10, that’s still good. That’s turning off the allergy in one person who otherwise is still allergic to that food.”
Although Carr emphasizes that desensitization treatments are in their infancy, he finds the early patient success stories inspiring. Oral immunotherapy experiments are going on around the world with allergens ranging from peanuts to eggs and some tree nuts. The allergist finds milk particularly appealing for desensitization – it’s easy to dilute and measure precisely. But beyond that, tolerance greatly improves quality of life, since dairy ingredients are so common.
Carr is seeing children from all over Alberta with this program. To be eligible, a patient has to be able to make it to his office or another approved, controlled environment every four weeks so that the consumption of a milk dose can be medically supervised. The Edmonton allergists are enrolling children who are school-age and who have a convincing reaction during an initial oral challenge. (A recent anaphylactic reaction is adequate in some cases.)
After the first challenge session, desensitization under an allergist’s care works like this:
In the first phase at home, parents make up a 1-to-25 part dilution of milk. With an eyedropper, a parent puts one drop of that solution on the child’s tongue. That’s done daily for a week. (Many patients take the first dose in the allergist’s office.)
Assuming there are no serious symptoms, the dose increases to two drops by Day 7, and doubles every week for five weeks. By Day 49, the child is switched from the solution to five drops of undiluted milk. Those doses double weekly until the six-month mark, when the child drinks 200 millilitres of milk daily.
If this goes well, he (or she) starts eating other dairy products. The child also takes an antihistamine daily to help the treatment work and to minimize side effects. If reactions persist, families are told to slow down the dose increases.
As of July, about 10 of the Edmonton patients have completed the milk desensitization therapy. One child’s family was told not to continue following an anaphylactic reaction, while one girl quit the program rather than stick with the daily dose regime. Although the results are promising, the Edmonton allergists and the Canadian Society of Allergy and Clinical Immunology stress that it is too risky to try desensitization on your own, without supervision from an allergy specialist.
The psychological effects of this treatment tend to be a rollercoaster ride. There are lows, but also the thrill of success and the delights of once-forbidden foods. Persevering through the milk treatment has given Josh Bjorndahl a boldness that carries into the rest of his life. “I think we underestimate the braveness of a kid doing this,” Wanner says. Her once-shy son was unfazed taking part in a recent tae kwon do demonstration in front of a huge group of people; a confidence that surprised his mother.
He is also delighted by the introduction of ice-cream sandwiches into his diet. Fellow patient Luke says strawberry- and orange-flavoured milk are his new favourites. And while Ethan has yet to warm up to a glass of milk, he certainly has taken to ice cream – especially strawberry-mango-peach flavour. “It was scary before,” he says of the frozen treat. “But now, it’s OK.”
First published in Allergic Living magazine.
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