BALTIMORE — Steven Mangold and Christian Hwang were diagnosed with severe cow’s milk allergies as young boys. Both initially fared well after months of experimental treatment at the Johns Hopkins Children’s Center that exposed them gradually to more and more milk.
Nearly three years later, Steven is still doing well. He can consume unlimited amounts of milk or dairy without a problem. The soon-to-be 11-year-old counts ice cream and tacos among his favorite foods.
But Christian, who’s 16, relapsed within a year of finishing his treatment in 2008 and has chosen to back away from milk, though he can tolerate it as an ingredient in cooked foods.
The different outcomes illustrate the mixed findings of a new Hopkins study examining the long-term effects of a treatment known as oral immunotherapy. The idea is that if milk intake is slowly increased, a child’s hypervigilant immune system will eventually ignore the food protein, thereby ending the allergy symptoms.
The study’s results are a warning to “proceed with caution,” said senior investigator Dr. Robert Wood, director of the Division of Pediatric Allergy and Immunology at the Hopkins Children’s Center.
“This is still something we are very optimistic about but that needs eight to 10 more years of really solid, consistent research before this is really going to be ready to bring out to the general public of people with food allergy,” Wood said.
The study, published online this summer in the Journal of Allergy and Clinical Immunology, tracked 32 children for up to five years after treatment.
At the conclusion of the original treatment, all but three had seen improvement and could tolerate at least some cow’s milk in their diet.
During follow-up, researchers found that eight children — Steven among them — remained symptom-free, while five had stopped consuming milk. The remaining 19, including Christian, experienced frequent or sporadic symptoms.
Researchers were alarmed to learn that six children had suffered serious allergic reactions and three needed the drug epinephrine to stop a potentially deadly reaction, according to the study.
Milk allergy is the most common type of food allergy among young children — three times more so than peanut allergy, said Wood, adding that food allergies appear to be growing more prevalent. One theory is that in today’s cleaner environment, people’s immune systems aren’t as challenged by germs or infection and have more time to focus on allergy.
Children typically outgrow their cow’s milk allergy by age 12. For those who don’t, avoidance is key, Wood said. That can present practical difficulties and social challenges — when, say, a child has to take his own food to a birthday pizza party. And it means living with the fear that inadvertent exposure could cause reactions ranging from unpleasant to life-threatening.
Wood began treating patients experimentally with oral immunotherapy around 2007, “when it was decided we could do something like this without putting people at too much risk.” Treatment is closely monitored, with the progressively larger doses administered at the hospital.
‘It got better and better’
Steven Mangold, whose family lives in Ashburn, Va., was diagnosed with a milk allergy at 9 months. He also has an egg allergy for which he recently began treatment at Hopkins.
Before treatment, even a sip of milk would cause a stomachache and nausea. If he didn’t throw up, he’d get hives, his lips would swell and he’d start to cough. He sometimes needed multiple doses of Benadryl. Once, his mother had to inject him with epinephrine before taking him to the hospital.
When he began oral immunotherapy at Hopkins, Steven couldn’t tolerate a quarter-teaspoon of milk. After a year of weekly dose escalation, he could handle a quarter of a cup.
Over the next year he ingested a steady amount of milk protein each evening at home. Then his parents moved him to “real food,” starting with strawberry-flavored yogurt.
“It got better and better,” said his mother, Shirin Mangold. “He said, ‘Can I have cheese on my sandwich?’ Little by little he’d ask for more things. Finally, we said we’re not seeing any problems — have at it.”
One thing he’s never developed a taste for is cow’s milk, preferring to drink soy milk. But the other day he had two bowls of cereal for breakfast.
Choosing to live with it
Amy Hwang learned that her son Christian had a milk allergy when as an 8-month-old he had a dangerous reaction called anaphylaxis.
As he grew older, an itchy throat was the main symptom, along with bumps on his lips and an unpleasant sensation in his ears. He would “hive up” just by touching a few drops, Amy Hwang said, making dining out nerve-racking.
The oral immunotherapy treatment at Hopkins went well, but he later relapsed. The good news was that Benadryl is now sufficient in case of a reaction, while before he sometimes wound up at the hospital.
Christian chose to back away from milk despite the progress he’d made.
“I felt I could live with the food allergy,” he said. “I didn’t feel like it was worth it. It was a whole lot of work to continue it.”
Wood thinks long-term allergy relief depends on keeping milk in one’s diet.
Christian “didn’t feel well, so he wasn’t going to push his body to build up more tolerance to something that made him feel lousy,” Wood said. “He ratcheted back further and further and lost protection.”
Even so, Christian and his mother believe he is better off having undergone treatment. Though he never leaves home without a backpack containing Benadryl and a pair of injectable epinephrine devices called EpiPens, he can eat a variety of cooked foods containing milk.
“I can eat a lot more than I used to,” he said. “My chances of getting a life-threatening reaction are a lot lower now, which is a big positive.”