Though Not Cured of Her Peanut Allergy, Robyn Still Receives Treatment and Will Soon Complete Her Three-Year Maintenance Schedule of Her Daily Dose
Robyn Cathcart is a fun, energetic 8-year-old who likes to do many things normal for kids her age: Traveling to new places. Riding her bicycle. Playing outside. Eating peanut butter and jelly sandwiches.
Except Robyn is not your typical 8-year-old. She first tested as allergic to peanuts at 16 months old, when her mother, Marsena, brought her to Cincinnati Children’s to see our team of specialists and undergo a series of food allergy tests.
Doctors compiled the results and it was determined that Robyn, who had previously suffered hives and swelling after ingesting cow milk and eggs, was verified as 95% likely to suffer a peanut reaction.
So how is she eating PB&J today? It’s thanks to her hard work with the Oral Immunotherapy (OIT) Clinic, where Robyn is one of the first graduates.
As a clear sign of her continuing progress, she’s now enjoying different foods formerly off limits to her, and savoring every peanut buttery bite, no matter how scant the spreading.
“I like eating peanut butter and jelly sandwiches,” she says. “I don’t put that much peanut butter on, but with lots of strawberry jelly — it’s still good.”
Two years ago, Robyn completed the build-up phase of the program. Graduation from this phase was a major milestone, but it doesn’t mean she is cured of her peanut allergy or done with treatment. Like most patients, she then began her three-year maintenance daily dose of peanuts, said Christa Mills, OIT program coordinator.
Ultimate Goal: Transitioning From Peanut as a Medicine to Peanut as a Food
Robyn is doing well, with no setbacks since staring the program. In the coming months she will complete her three-year maintenance schedule of her daily dose – six peanuts, which is considered “high dose” – according to her doctor, Justin Schwartz, MD.
“The current recommendations for OIT are for maintenance doses to be continued indefinitely, but we are actively researching outcomes to learn more,” said Schwartz.
“After desensitization, the therapy is highly individualized to each patient and family on the basis of their preferences and also the patient's OIT history, such as the degree of sensitization to the allergen, the presence and / or severity of any adverse reactions, and the results of what we call a high-dose desensitization challenge.”
In a high-dose desensitization challenge, the child eats an amount equal to 21 peanuts. This type of challenge is allowed following 12 months of daily maintenance doses and could be repeated every 12 months afterwards if a reaction occurs during the first challenge attempt.
Robyn, however, has done so well (no allergic reactions) that she could attempt an “Ad Lib” therapy, in which she could eat as much of a peanut product as she wants and different types of peanut products, but still eat them on a daily basis, said Schwartz.
If once a day proved tolerable, Robyn could try peanut products more than once a day. And if desensitization were maintained with Ad Lib therapy, she might later get another option called Intermittent Therapy, in which she could eat as much of a peanut product as she wants (and different types of peanut products) but eat them intermittently, only three to four days a week.
“Both Ad Lib and Intermittent Therapy represent the transition from peanut as a medicine to peanut as a food and at higher amounts. Through these clinical study therapies, we hope to gain answers that can improve OIT practice and outcomes,” explained Schwartz.
For now, Marsena is happy with the steady progress and to see her daughter’s food choice expand as she gradually builds up a much-needed tolerance to peanuts. But safety remains a priority.
“It’s definitely opened up her choices of variety of food. Everything says, ‘may contain peanuts,’ so you’re at a higher risk for it,” said Marsena. “We don’t want to get completely lax with it and say, ‘Oh, she’s fine.’ We still, of course, read labels. We are still hyper-diligent in making sure we keep an eye on her, but it’s definitely opened up that avenue (different foods) as well.”
Excited for Appointments, Avoiding the ‘Peanut Table’
Over the years, Robyn has gotten to know many Allergy staff members, building both a trust and a rapport. She said she likes visiting Cincinnati Children's because she enjoys learning new things and considers each visit as a learning opportunity.
“They've been taking care of me for a long time,” she said, admitting she was a bit nervous the first time she came to the OIT clinic. “But once you go it's really fun there. And then the next appointment you get excited about it.”
And as a parent, Marsena doesn’t dread clinic visits and appointments either.
“Didn’t just feel like [you’re] a patient and, ‘You are in exam room 1.’ It didn't feel like that at all,” she explained. “They are focused on [Robyn]. They are patient and took time to answer questions. The team is amazing.”
At some hospitals, when meeting with doctors, Marsena said it can feel like 20 minutes or more before you get your questions answered and concerns addressed.
“That wasn't the case at all [at Cincinnati Children's]. They took the time to make sure we understood, Robyn and I. And they talked to her about books and what she likes to do for fun. Which makes it a lot smoother.”
As Marsena points out, the program has been great from a safety aspect, but there’s also the social benefits as well, like Robyn being able eat lunch at school with her friends in the cafeteria and not having to be isolated at the “peanut allergy table.”
“I didn’t want her to be distanced from everyone else,” said Marsena. “Having her go through this program, she can sit next to her friends and still interact with people during lunch.”
Reflecting back on their time spent at Cincinnati Children’s, Marsena recalls her decision to enroll Robyn as one of the first patients in the peanut clinic. She wanted to know the risks and the time commitment, for sure, but her mind was put at ease knowing her daughter would be in good hands.
“Well, its Cincinnati Children’s,” said Marsena. “You know, that name alone instills confidence that you are going to get good, high-quality care from knowledgeable people. So just the fact that it was Cincinnati Children’s took a big weight off my shoulders in terms of trusting the entire process.”