Jonathan is among the 1.4 percent of U.S. children allergic to peanuts. Once terrified of accidental exposure, the 6 year old now regularly enjoys peanuts as a snack, all thanks to an innovative clinical trial at UNC.

Jonathan is among the 1.4 percent of U.S. children allergic to peanuts. Once terrified of accidental exposure, the 6 year old now regularly enjoys peanuts as a snack, all thanks to an innovative clinical trial at UNC.

Six-year-old Jonathan likes nothing better than ripping into a bag of peanuts at a Charlotte Knights baseball game and enjoying them right from the shell. This common summertime pleasure could have caused a potentially life-threatening allergic reaction just a few years ago, but his participation in groundbreaking food allergy research has changed his life.
“He’s leading an active life these days,” says his mother, Linda. “He plays baseball, basketball, and lacrosse. He has no limits.”
Jonathan’s food allergies cropped up early in life. “I was a nursing mother and noticed he had some skin problems,” Linda recalls. “We thought it was just contact dermatitis. But one day, at six months, I gave him some formula that brought on such a case of hives, I strapped him in the car and headed for the nearest urgent care.”
The problem turned out to be an allergy to the whey protein in the formula. From that point on, the family had to vigilantly monitor Jonathan’s diet. Further testing revealed he was sensitive to dairy, eggs, and peanuts.
At age 3, Jonathan’s family learned about pioneering food allergy research being done by Wesley Burks, MD, who leads the UNC Children’s Food Allergy Initiative. The toddler qualified for one of Burks’ peanut allergy studies.
The study consists of giving the allergic patient small, precise amounts of peanut protein, in increasing doses, in a tightly controlled environment over many months. The study is “double blind,” meaning that neither the patient nor the observers know whether the food contains the allergen or a placebo. After the food is consumed, the patient is closely monitored for signs of allergic response.
“It’s an incredibly stressful time for the parents,” explains Jill French, RN, a study coordinator. “We must watch the patients like hawks but discretely. We tell the parents we are right there watching every reaction, but we must do it so the children remain calm. It can be a terrifying time for the children. All their lives they have been told not to eat something, and now we come along and ask them to eat it. ”
French describes a typical patient visit: “Every half-hour, they get a little more, plus a physical check. We watch for any reaction. We must be very focused; it’s a high intensity situation.”
Jonathan began the peanut study in 2011, successfully completing the course in April 2013. His progress is remarkable, but his allergies will always need monitoring, cautions Pam Steele, CPNP, who works with the family.
“His ability to ‘tolerate’ peanuts has increased dramatically,” says Steele, “but ‘cure’ is not a word I would use. We’ve got a lot to learn and a long way to go.”
Since completing the peanut study, Jonathan has been enrolled in a similar study for egg allergy, which makes him a frequent visitor of UNC’s pediatric food allergy study lab.
“It’s actually a fun place for them to visit,” says his mother. “There are games, TV, and iPads. They can even do their homework, and siblings are welcome, too.”
“But what really makes the difference is the staff here,” she continues. “We come every two weeks, and on the week in between, they will call to catch up and check on things.”
Feelings of admiration between the parents and the staff are mutual.
“They do this every day,” says Steele of the food allergy families with whom she works. “It’s a lot of work and sacrifice. When you think of the gas they use, the time off from work, and perhaps having to rent a hotel, it all adds up. And they do this not only for their child but for the good of society.”
“In some ways it’s very easy,” says Linda. “We follow the plan at home and make sure we educate Jonathan’s friends about the diet.”
“We’ve been very lucky,” she adds. “He’s never, ever had to use an EpiPen.”