Peanut Allergy: Jayden's Story
Fourteen-year-old Jayden Johnson experienced his first life-threatening allergic reaction to peanuts when he was only 13 months old.
“My husband had just given Jayden a peanut butter sandwich cracker when he started choking,” explained Kim Johnson, Jayden’s mom.
“We were driving and pulled over to the side of the road. My husband finger-swept Jayden’s mouth to get the cracker out, but Jayden kept choking,” Kim said. As the reaction worsened, Jayden turned bright red, his eyes and nose began running, he started projectile vomiting, and hives began forming around his eyes.
“We immediately took him to our local emergency room,” Kim explained. “They said Jayden probably had a peanut allergy, and they referred him to an allergist.”
The Johnsons live in Bellevue, Neb., and their allergist confirmed the diagnosis. Unfortunately, at the time, there was no treatment available for a child allergic to peanut, other than avoidance.
“The doctor told us we needed to be extremely careful and not allow Jayden to eat anything that had peanut in it, or that was processed in a plant with other products containing peanut, and that we needed to carry an epinephrine pen with us at all times, just in case he accidentally ate something with peanut in it,” Kim said.
The Johnsons took the allergist’s recommendations seriously. They cleaned out their pantry, avoided restaurants and social situations where Jayden might accidentally be exposed to peanut, read every food label, and always had an epinephrine pen available, just in case.
“We taught Jayden early on how serious his allergy is and that he couldn’t eat anything from anyone else,” Kim said.
A full-time job
Avoiding peanuts became a full-time job for the Johnsons, but it was the only way to keep Jayden safe. When he started school, it became even harder to avoid foods containing peanut.
Lunch time, snacks, sleepovers, birthday and holiday parties, all presented potential life-threating risks for Jayden and became a constant source of stress for the Johnsons.
Jayden was often excluded from class activities, or isolated at a special peanut-free table because of his allergy.
“It was hard for me,” Jayden said. “As I got older, I realized how much I was missing out on, not just because I couldn’t eat peanuts, but because I missed the opportunity to gain important social skills at different developmental stages in my life.”
Hope for treatment
Fortunately, when Jayden was about 10 years old, the allergist in Bellevue began participating in a clinical trial for a new investigational drug to treat peanut allergy called Palforzia.
“I asked Jayden if he would like to participate in the trial, and he wanted to,” Kim said.
As part of the trial, the allergist performed a challenge test to determine how much peanut it took to trigger an allergic reaction. The answer was only 1 milligram of peanut protein, about the size of a grain of salt. As a frame of reference, one peanut kernel contains approximately 300 milligrams of peanut protein.
With such a severe allergy, Jayden was accepted into the trial, but because it was a double-blinded study, the family had no idea whether he was taking a placebo, or receiving the actual medication.
Given in incremental doses throughout the trial, Palforzia is standardized peanut flour. Jayden started each day by stirring the prescribed dose into pudding, ice cream or smoothies, following up with his allergist every two weeks to determine how well he was doing.
Each time, the allergist increased the dose. The goal was to build up a tolerance to peanut, usually over a four-to-five-month period. If Jayden was taking the actual medication, he was increasing his tolerance to peanut, but he didn’t know that for sure.
“Jayden didn’t really have any reaction to the medication, so we thought he was on the placebo,” Kim said.
Finally, after nearly two years of participating in the trial, Jayden was shocked to learn he was taking the actual medication, and he had now built up a tolerance the equivalent of eating one peanut.
But the Johnsons also were disappointed to learn that their local allergist was discontinuing participation in the trial.
“Jayden was doing so well, we had to find another center so that he could continue in the trial,” Kim said. Fortunately, Children’s Mercy Kansas City also was taking part in the study under the direction of Jay Portnoy, MD, Pediatric Allergist.
Jayden’s allergist contacted Children’s Mercy, and he was accepted as a patient in the trial. “We live near Omaha, Neb.,” Kim said. “The hospital is about two-and-one-half hours from us, but we were willing to make the drive for Jayden.”
Jayden had his first appointment with Dr. Portnoy on May 24, 2018, and he picked up right where he left off. “Dr. Portnoy is very cool, calm and personable,” Jayden said. “He always answers every question, no matter what.”
Kim agreed and said Dr. Portnoy and Susan Flack, RN, CCRN, Clinical Research Coordinator, have been wonderful to work with. “We’ve had a great experience with the Children’s Mercy team.”
Palforzia was approved by the Food and Drug Administration in January 2020, but the trial has continued for its original patients, like Jayden, following them to determine the long-term benefits and side effects.
Today, because of COVID-19 precautions, Jayden sees Dr. Portnoy via virtual visits, reducing the risk of exposure to the virus, but maintaining the connection necessary to continue with his care.
Thanks to desensitization with Palforzia, he’s now able to able to consume 2,044 milligrams of peanut protein cumulatively without triggering a reaction. That’s the equivalent of eight peanuts!
“They now say Jayden is ‘bite-proof,’ meaning he could accidentally take a bite of something with peanut in it without going into anaphylactic shock,” Kim explained.
Dr. Portnoy said patients who have reached the level of desensitization that Jayden has don’t have a license to eat foods containing peanut.
“We don’t tell patients they can eat peanuts or that they can stop carrying their epinephrine pen, but they don’t have to be so worried about a life-threatening reaction if they do eat peanut,” Dr. Portnoy explained.
Long term, Dr. Portnoy said physicians aren’t sure what would happen if someone stopped taking Palforzia, but they know as long as it’s continued, they can maintain a tolerance to peanut.
“This is the first time in my career that we’ve had a viable treatment to offer patients who are allergic to peanut, other than total avoidance. Treatment greatly reduces the anxieties these families have and improves their quality of life,” he said.
Jayden agreed with Dr. Portnoy. “Now I can enjoy foods and do the things I want to do without constantly worrying that I might eat peanut and have a life-threatening reaction,” Jayden said.
In fact, the teen now plays baseball and is active in marching band, show choir, robotics and a number of other school activities. “This experience has influenced my understanding of allergies, and is making me think about a career related to medicine,” he said.
For Kim, the medication has given their family the freedom to do things others take for granted. “Before Jayden started the trial, if the school called one of our phones, we were in constant panic mode. Now, we’re not as worried. This has been life-changing.”
Dr. Portnoy encourages anyone who thinks their child has a peanut allergy to have them evaluated by a board-certified allergist. “Only 1.5% of the population has a true peanut allergy, but if a child does, we now have a viable treatment option,” he said.
The Children's Mercy Food Allergy Center is designated as a National Center of Excellence and a Clinical Research Center of Distinction by the Food Allergy and Research Education (FARE) Clinical Network. Its Peanut Allergy Program is coordinated by Jodi Shroba, APRN, Clinical Nurse Practitioner. For more information, call (816) 960-8900.
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Allergy/Asthma/Immunology; Professor of Pediatrics, University of Missouri-Kansas City School of Medicine