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He's (finally) got milk
![]() Robyn and Brett Nasuti, 11, show their excitement through their T-shirts over Brett’s ability to drink milk after having been allergic to it since birth at a recent allergy support group meeting in Foxboro. (Photo by Susan LaHoud)
Top Headlines Milk desensitization study leads to success against boy's allergy
FOXBORO - Like any 11-year-old boy, Brett Nasuti has a favorite T-shirt.His just happens to be one that sums up his situation. Brett sports the black T-shirt emblazoned with white letters spelling out a dairy industry advertising catch phrase "got milk?" with pride, in part, because now he can. After participating in a milk desensitization trial program at Children's Hospital in Boston, he can now have products made with milk after a lifetime of severe allergies, which as an infant would leave him purple with hives. Within eight weeks of the oral immunotherapy program in which the safety of oral desensitization in patients pretreated with the drug Xolair was being tested, he was able to take his first sip of milk in 10 years. ![]() A baby photo of Brett and the rash drinking milk caused. (Submitted)
"It was so cool," Brett said speaking to parents attending a recent meeting of the Southeastern Massachusetts Food Allergy Support Group at Boyden Library in Foxboro. "I could actually drink milk which I had treated as a poison."Indeed, it took a long time to get to this point for the family, with challenges they still face since Brett also suffers from allergies to eggs and nuts, and a 5-year-old son Nicholas also has myriad allergies. Meanwhile, Brett's sister, 10-year-old Taylor, has not tested positive for any allergies. Brett, when he was an infant, tested positive for allergies to 15 different foods, but only after numerous reactions eventually led to the testing. Robyn said the testing was recommended after Brett was scheduled to undergo surgery at Children's to repair his palate at the age of 10 months. In preparation, he had to be weaned off the bottle to avoid sucking and introduced to food early, she said. A little cake at 6-months-old and "he was purple head to toe," Robyn said, noting a doctor at the time said it was eczema. Brett could not have any Benadryl seven days before his surgery. His mother sewed socks for his hands so that he would not scratch himself. He was put on a clear liquid diet and within a short amount of time, his skin started clearing up, the dark circles under his eyes diminished. It was during that time that doctors suggested Brett be tested for allergies. When Robyn got the phone call with the list of 15 food allergies ticked off, she was five months pregnant and overwhelmed. The call came on Brett's first birthday. That's when Robyn turned to the support group. Ten years later and a board member of the New England Chapter of the Asthma and Allergy Foundation of America, she said there's been progress in making people more aware of the abundance of allergies and the seriousness of those reactions, which can lead to life-threatening situations. Brett has had allergic reactions, which have included a drop in blood pressure, causing him to black out, wheezing and hives that have landed him in the hospital. According to the National Center for Health Statistics, four out of every 100 children have a food allergy. In 2007, the latest figures available, about 3 million children under age 18 were reported to have had a food or digestive allergy within the previous year. And from 2004 to 2006, there were approximately 9,500 hospital discharges per year with a diagnosis related to food allergy among children under age 18. Eight types of food account for over 90 percent of allergic reactions - milk, eggs, peanuts, tree nuts, fish, shellfish, soy and wheat. Ten years ago, "there was nothing" in terms of support for parents of children with extreme allergies, Robyn said. Now, there are many studies and trial programs underway, including the oral immunotherapy program at Children's that Brett is participating in. Xolair is currently prescribed for the treatment of severe asthma, she said. The premise is to use the medicine to desensitize the system while slowly introducing milk to build up resistance. Milk is among the most common food allergens in infants and children and one that Brett still maintained, along with eggs and peanuts, even though by about age 3 he had outgrown half of his allergies. Her youngest son has been diagnosed with 16 allergies and while both boys fit the criteria to be candidates in the trial program, she and husband chose to enroll only Brett because he could understand the long-term benefits of the treatment, which in his particular case, required going to Children's every other week for several months for injections of the drug and testing. Nicholas, she felt, was too young. But eventually, she said, she hopes results from studies will come up with ways to treat his allergies, which have led to some life-threatening reactions. One of the risks of the study is the threat of anaphylactic shock, but doctors and nurses are there throughout the tests, Robyn said. Brett started the trial program, funded by three drug manufacturers, last March, starting with a milk challenge eight weeks into the program with less than one-tenth of an ounce. The ten-hour challenge that day ended with Brett taking in 1.1 oz. of milk. Robyn estimated her son underwent about 50 shots over the course of treatment. Brett, who has obtained his black belt and was speaking at the Foxboro meeting for his public speaking badge for Boy Scouts, said that while he was nervous and anxious throughout the hospital treatment, he kept the long-range goal in mind. "I never changed my mind because I'd do anything to eat milk and cheese with my friends." "I'd never had ice cream or cheese pizza." From July 23 to Aug. 13, all of his friends' homes where he had previously been unable to stay because of his allergies, were open to sleepovers "because his allergies were shut off for 8 weeks," his mother said. Everything had to be documented at home and the same exact amount of milk had to be consumed every day, Robyn said. "Every single week they would increase it by 12.5 percent," said Brett, until by the end of July the top dose was 2.5 ounces." Then he went into so-called "maintenance" for about seven weeks, followed by another visit to the hospital for another, final challenge - building up to an 8 oz. carton of regular milk. "They let me drink it, I stayed overnight and then we went home and we had a giant pizza party!" he said. There were 85 friends and family members at the event at their Upton home two days after that trial, his mother said. That was the first pizza he had ever eaten. "It was very exciting," Brett said. He could also have ice cream and pizza in school now, which was his goal. He was pictured on the front page of the fall edition of the hospital's "Dream" magazine, posed with his arms crossed and an intense expression - and wearing his black T-shirt. Brett's final appointment is in April. One of the other outcomes of the program is that Brett's asthma has also subsided, his mother said. She does not know how the other participants in the study, both at Children's in Boston and another hospital in California, are faring, and there are still more phases of the trial study to be completed before the possibility of it being put on the market for use in treating severe allergies. But for now, Brett's been able to continue to consume about four ounces everyday of milk products. In fact, now he must keep at least two ounces of milk products in his system, "so that his body does not get out of practice," said his mother Robyn, who wears a companion white T-shirt to Brett's with blacks letters saying "got hope?" For Brett, it's been a boost beyond the health of it. "Before I was the 'allergy kid," he said. "Now I'm popular and famous and it's cool," he said, referring to his status since being in the study and on the cover of the hospital magazine, as well as being featured in a hometown newspaper. Actually, he's found he's not that fond of milk. "My favorite is between pizza and Cheetos," he said. "But at least he doesn't have to worry about ending up in the hospital" because he's eaten them, added his mother. SUSAN LaHOUD can be reached at 508-236-0398 or at slahoud@thesunchronicle.com.
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