Stories about: Milk allergies

Life after milk allergy: Catching up with Brett Nasuti

John Lee, MD, and Brett_ThrivingWhen Brett Nasuti was an infant, he was constantly breaking out in hives. His arms, legs, and even his face were always covered in small, itchy bumps. In fact, by the time he was a few months old, Brett’s mother Robyn had taken to cutting the ends off socks and sewing them over the arms of his baby clothes, so his budding fingernails didn’t scratch his skin raw. There were doctor visits and quick fix remedies, but nothing seemed to help for very long.

At eight months, Brett was given cow’s milk for the first time—with awful results.  “He just started throwing up all over the place,” Robyn remembers. “It was terrible.”

Two months later, Brett was at Boston Children’s Hospital for an unrelated issue, but while there, a nurse recommended Brett get tested for food allergy. When the results came back, the cause of his eczema and stomach problems were clear.

“The tests showed he was ‘one hundred plus’ on the allergy scale,” Robyn says. “At that point, it all made sense. I thought back to months earlier where sometimes after I kissed him on his cheek, he would get hives in the shape of my lips. Turns out it was milk on my lips from coffee I had hours before. That’s how sensitive his system was to dairy.”

For the next several years, Robyn went through what many parents of children with severe food allergies go through—she learned as much as she could about the condition, adapted her family’s lifestyle as best as she could and spent a lot of time worrying when Brett left the house. Living with that much extra work and stress was difficult, so when Robyn learned researchers at Boston Children’s were working on a new treatment that could reduce—possibly even eliminate her son’s milk allergy—both she and Brett were very interested.

A new approach to treating milk allergy

Brett was soon enrolled in a first-of-its-kind study that combined a powerful anti-allergy medication and a methodical desensitization process that gradually made his body more “used” to milk and dairy.


Over the course of a few weeks, a then nine-year-old Brett received a special anti-allergy medication that weakened his body’s response to milk. After a few weeks, he continued to get the medication but also started a desensitization process where he drank very small doses of cow’s milk. (If the body is given small, but increasingly larger amounts of an allergy trigger like milk or peanuts—usually not enough to cause a reaction—the body sometimes develops the ability to tolerate it better.)

The combined one-two punch of the medication and desensitization trained Brett’s body to accept milk, and soon he was weaned off the medication while eating up to two ounces of dairy every day, which he still does to this day.  (Daily milk exposure helps keep his body “used” to milk.)

 

 Brett today

It’s been five years since Brett became Boston Children’s first patient to go through the medication/desensitization process, and he’s still doing well. Current testing shows zero signs of an allergy to milk in his system, and as long as he continues his daily intake of two ounces of dairy, his doctors are hopeful he may never need to worry about his milk allergy again.

And while Brett won’t miss much about having to avoid dairy, he says there are aspects of his life he wouldn’t change, even if he could. “Living with a food allergy is hard, but in a lot of ways, it’s helped shape who I am,” he says. “It’s given me the opportunity to learn about myself and to help other people, which has become really important to me.”

For the past few summers, Brett has worked as a counselor at a summer camp for children with food allergy, teaching them how to live with their condition and remind them that they’re not alone in dealing with it. He’s also slated to travel to the Dominican Republic next year as part of a school trip that places students in local communities to benefit school systems through volunteer work.

“I never would have been able to work at the camp if not for my allergy, but at the same time, I also wouldn’t be able to travel to the Dominican Republic if I was still severely allergic to milk, because there are just too many opportunities for things to go wrong,” he says. “But with that behind me, I’m able to go there and help people, which is great. The treatment I received at Boston Children’s has really opened so many doors for me, and I’m really looking forward to everything the future holds.”

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A potential breakthrough for peanut allergy treatment

Peanut allergies are among the most rapidly growing food allergies in the United States. Millions of children are currently living with the condition, with new cases being diagnosed daily. (A recent study shows the number of reported peanut allergies tripled in just over a decade.) And because allergic reactions to peanuts tend to be the most severe—80 to 95 percent of all food allergy deaths are peanut or tree nut related—the trend is a serious cause for concern.

But a small pilot study published by the Journal of Allergy and Clinical Immunology, may offer hope for the hundred of thousands of families living with the condition. Conducted by researchers from Boston Children’s Hospital’s Division of Allergy and Immunology and Harvard Medical School, the new study shows that by combining a powerful anti-allergy medication and a methodical desensitization process, Boston Children’s researchers may be on their way to creating the next best thing to a cure for peanut allergy.

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First day of school — with food allergies

Back to school with food allergy.The first day of school isn’t just nerve-racking for kids—it can be tough on moms and dads too. After spending so many years looking after a child, packing their lunch and sending them off to be taught and supervised by adults you’ve never met before can be a lot to deal with.

That first day of school anxiety is often even stronger for the parents of children with food allergies, who worry if their children will be protected from reactions in the classroom.

“The idea of classrooms filled with children, foods and other potential allergy triggers can be scary for children with food allergies, and their parents,” says Dr. John Lee, director of Boston Children’s Hospital’s Food Allergy Program. “But thankfully, food allergy awareness has come a long way in the past few years. With a little extra planning from mom, dad, an allergist and the school, there’s no reason for school to cause extra anxiety for any child with allergies.” To do so, Lee recommends the following:

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Our patients’ stories: understanding (and beating) eosinophilic esophagitis

As an infant, Cameron Newbold hated eating. That’s not to say he was a finicky eater like some babies; he actually dreaded feeding times.

“Anytime we tried to feed him he’d freeze up, stiff as a board,” remembers his mother Kristina. “It was like he knew the food was making him sick. It was terrible.”

During feedings, Cameron cried, squirmed and would never eat more than a few ounces at a time. At 5 weeks old, he was hospitalized because he stopped eating, but a conclusive diagnosis couldn’t be found. The Newbolds left their local hospital with medication for reflux, a child who was still sick and few answers.

Over the next few years, Cameron was tested for dairy aversion and various food allergies, but most of the testing was inconclusive. He lived almost exclusively off soy yogurt (Kristina believes the cool, smooth food was soothing to him) and often felt too sick to play with other children, which affected how he related to his peers.

“Looking back now, it’s clear that Cameron felt sick just about all the time when he was younger,” Kristina says. “But because that’s all he had ever known, he didn’t really know how to express his discomfort, or when he felt worse than usual. As far as he knew, constantly feeling awful was what life was.”

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