Brett Nasuti, the 12-year-old Children’s patient who last year became the first person in the country to take part in a milk allergy desensitization study, is featured in a Boston Globe article today about the rise in food allergies – and why doctors and researchers are so flummoxed by it.
Editor’s note: This week and next, we will be doing a series on how kids can give back to other kids.One huge way kids are giving back to kids is by taking part in medical research studies. If you’re a research subject, or the parent of one, you already know that you’re mainly helping not yourself, but generations of kids to come — so that researchers can better understand the disease and find new and better treatments. In this video, the first of several posts about children in medical research, kids and parents talk about their experiences volunteering for a study and what they hope to gain. It was shot in Children’s Clinical and Translational Study Unit, our own “research central.”
Here’s a quick look at what Thrive was up to last week.
Arianna Faro shares her story of how she’s struggled with the rare, disfiguring disease Klippel-Trenaunay (KT) syndrome, but has come to accept the role it plays in her life. A new study has reignited worries about BPA exposure being hazardous to our children. We find out in the last part of our milk allergy series if Brett Nasuti has been cured, and his mom, Robyn, tell us how the result affects her family. Parents tell us why they’ve chosen to give their children the H1N1 vaccine. The HealthMap team gives us a weekly update on the latest H1N1 news. We’re keeping up with Children’s Hospital Boston’s heart team in Ghana. Children’s resident Mediatrician helps a dad figure out how his son can balance school work and social media. A Children’s study aims to catch dyslexia before it catches your child.
By Robyn Nasuti
What does being able to tolerate cow’s milk protein mean to my milk allergic family?
- It means Cheetos, Doritos, yogurt, pizza, Smart food, chicken parmesan and ice cream, but those are the obvious answers.
- It means using hand soap without worrying whether or not it has milk in it.
- It means no more separate pizza stones and pizza slicers.
- It means buying school lunch with friends.
- It means eating in a restaurant without stomach-turning fear.
- It means movie theater popcorn.
- It means vacation without locating the nearest Emergency Room before we go.
- It means I can buy the shampoo I used before he was diagnosed with a milk allergy.
- It means caramel candy coated apples in the fall.
- It means buying junk food at the carnival.
- It means milking a cow at our friend’s dairy farm in New Hampshire.
- It means re-booking that cancelled trip to Mexico, because they couldn’t feed him at the hotel.
- It means Boy Scout camping and school field trips (without mom or dad chaperoning every trip).
- It means sitting at a table and not having to wash it because he’d get hives if milk was present.
- It means going to a friend’s birthday party and they don’t have to put away the Doritos and chocolate candy when you arrive. It means taking home the goody bag and eating the candy rather than giving the food to his sister.
- It means we don’t have to swap out every single candy at Halloween.
But most important, it means I can kiss him and not have to stop and think about what I ate and run to brush my teeth first.
In a single word….it means FREEDOM!