Drug trial aims to take bite out of food allergies
Source of Article: http://www.milforddailynews.com/news/x1765092196/Drug-trial-aims-to-take-bite-out-of-food-allergies
By Krista Perry/Daily News staff
Milford Daily News
Posted Aug 03, 2009 @ 12:26 AM
Most parents are encouraged to give milk to their children, but when Brett Nasuti, 11, was a baby, milk was deadly.
By his first birthday, Brett was diagnosed with 15 food allergies, which often caused severe reactions.
"He was very rashy, a very sickly child," said Brett's mother, Robyn. Brett would often break out into hives or eczema, Robyn said, and she had to put socks on his little hands to keep him from scratching.
It wasn't until Brett was put on a clear liquid diet when he was a baby, that the rashes went away, Robyn said.
Then Robyn got a call on Brett's first birthday from his doctor's office, and the nurse rattled off a long, terrifying list of all his allergens.
"The list of foods just went on and on," she said. "It was his first birthday and I couldn't even feed him the cake I had just made him."
Robyn and her husband, Alan, we shocked by the news.
"We cried. We didn't know what to do," she said. "We started reading everything and it was overwhelming."
By age 3, Brett had outgrown the majority of the allergies as his doctor predicted, but three major ones remain: Milk, eggs and peanuts.
"It's difficult, because you can get rid of peanuts, you just don't go near them. But you can't get rid of dairy," Robyn said.
Even family members, who kissed Brett on the check after eating something he was allergic to, would cause him to react, Robyn said. Brett used to leave family parties with huge rashes on his face, she said.
Going to school is a challenge for her son, Robyn said, but it is easier now that he is old enough to know what he can't have.
Brett's little brother, Nicholas, 5, also has severe food allergies. Their sister Taylor, 13, has none.
"We have to make pizza for Nicholas, pizza for Brett and pizza for Taylor, Alan, and I," said Robyn.
But soon, regular pizza will be on the list of things Brett can eat. He's participating in a clinical trial of Xolair, a drug originally used to ease asthma until doctors realized it eased food allergy symptoms. Brett receives the drug and a miniscule amount of the allergen, gradually increasing it so his body can build up a tolerance.
So far, Brett has been doing amazingly well on the drug, and can have about two ounces of milk per week.
"This is the cure we've been looking for," Robyn said, adding that the drug may be able to help with food allergens other than milk. "Living with this is hard work, it's discipline. Now he'll get to sit next to his friends who are drinking milk."
Brett is one of less than 10 kids participating in the trial at Children's Hospital Boston. When he finishes the yearlong trial in March 2010, the drug will go before the FDA for more clinical trials with more people involved, Robyn said.
Brett also can't wait to try ice cream, he said, recalling how happy he was when he outgrew his beef allergy.
"It was the best day ever," he said. "I just wanted more and more."
Now, when the Nasuti family goes out for dinner, Robyn hands laminated cards to the waiter or waitress detailing what Brett and Nicholas can't have, reminding them to clean all pans and utensils, and not to cross-contaminate foods.
The Nasuti children also have their own organized and labeled cabinets and shelves in the kitchen, so they don't get confused and accidentally eat something that would cause a reaction.
"We don't eat out very much - it's like taking your child's life into someone else's hands," Robyn said. "It can be very overwhelming."
Alan Nasuti said there are household items such as soap, shampoo, and shaving cream that contain eggs or dairy that the family had to get rid of.
"It's all about awareness," he said.
Brett has worked with his principal and teachers at the Memorial School to have a "Food Allergy Awareness Day," raising money for research. One year, if students donated money, they could wear pajamas to school, and last year, they could wear hats and chew gum.
"We made $175 with gum and hat day," Brett said.
Brett and his family also lobbied on Capital Hill for Congress to pass the Food Allergy Management Act, which calls for clearer guidelines to help schools manage students with severe food allergies.
Brett met Nancy Pelosi, speaker of the United States House of Representatives, during his visit, and has a large photo of the two of them shaking hands.
"Sometimes kids tease me and say my allergies are contagious or my asthma is contagious," Brett said.
Robyn, who specializes in marketing and communications and was laid off last year, said she is now starting her own business. She will create kids' emergency care sheets and restaurant cards for other families dealing with severe food allergies.
Aside from his aspirations of one day eating dairy products, Brett is interested in karate and is a Boy Scout.
"At the end of the day, he's like every other kid. It hasn't really held him back much," said Alan.
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