If your child does not have a food allergy, it is extremely likely that one of their friends or classmates does. Food allergy rates have been steadily on the rise, meaning that more and more families are left navigating daily life in fear of a reaction, and more public places such as schools are changing their protocols to protect these allergic children. One misstep, like a child eating some peanut butter crackers on a table before their child sits down, could be life threatening.
Thirty-two million Americans, 5.6 million of them children, deal with this daily fear according to the organization Food Allergy Research and Education. It can be exhausting and emotionally taxing to live in a constant state of vigilance.
Tamara (who asked that her last name be withheld) is the parent of one of these children. Her 9-year-old son Buddy* was first diagnosed with a peanut allergy at age 3 when eating a sandwich. He began vomiting, wheezing, and scratching his eyes. The toddler’s parents were terrified, and looking back now know there were signs much earlier of milder reactions.
When the pediatrician called to confirm Buddy’s allergy, Tamara says that “life completely changed.” They entered uncharted parenting waters as they sought to avoid him having another life-threatening reaction.
Tamara, a licensed professional counselor for the last 14 years, quickly began to realize how lonely this journey would be for her family. “Food allergies come with a lot of psychosocial aspects. It seemed like a natural fit for me to begin providing coping strategies for the anxiety and fear, help families build resilience, and provide psychoeducation on increasing their confidence.” She realized that there was a gap in mental health services — no one was addressing these allergy families.
Families were having a hard time finding therapists, so I created resources for the food allergy community. There is no training.
There is a growing need for mental health services for individuals with multiple health issues, according to the National Society for Biotechnical Information. When an individual has a physical condition and accompanying mental health concerns, they need specific counseling related to how their physical condition affects their mental health. This is where Tamara noted a huge lack of resources. “I began to build on this. Families were having a hard time finding therapists, so I created resources for the food allergy community. There is no training.”
She started a professional working group which soon became the Food Allergy Behavioral Health Association to help parents find counselors who are versed in allergy issues. It is a work in progress to develop trainings and education for professionals, a role that Tamara and others are glad to fill.
Tamara is first a mom, though, and the daily fear for Buddy's safety was still present in their lives. Three years ago, though, Buddy had the chance to participate in a potentially life-changing clinical trial for the Viaskin peanut patch aimed at reducing reactivity to peanuts. Buddy waited one year before entering the trial at Lurie Children’s Hospital in Chicago. They began the trial when Buddy was 6 years old with great hope, and some trepidation. Logistically, Tamara notes that it’s pretty easy, “It’s just a patch on, patch off every day.” The gradual exposure to peanut protein on the patch is purported to reduce reactivity to peanuts, meaning kids like Buddy can hope to have less severe reactions.
Dr. David Fleischer, Director of the Allergy and Immunology Center at Children’s Hospital Colorado, is hopeful about the outcomes, telling Romper by phone, “What I am trying to do is treat patients with food allergies by exposing them to small amounts of the allergen. By doing that on a regular basis, this helps build up the amount they can tolerate. If they are on these therapies the goal is that they won't have a reaction or have much less of a reaction. These therapies are like allergy shots for tree grass pollen — the body becomes more immune to it through exposure.”
The patch is still being trialed, and and the application is planned for submission for review by the FDA later this year, but Dr. Fleischer says that they are encouraged by the results thus far and will continue to study the patch. More patients responded to the patch than the placebo. Patients complete a “food trial” to see how much of their allergen that they can tolerate. Patients with the Viaskin patch were able to eat a higher amount than before the patch, and some had no reaction at all.
At age 6, he reacted after ingesting only a quarter of a peanut, and now can tolerate much more.
“Patients and their families want some peace of mind. The key is you still have to do all the things — read labels, carry an EpiPen, and still be very careful, but you can have this peace of mind.” They are hoping for approval next year, and are still studying younger patients. “We think the earlier we start these therapies, especially with peanuts, the better it may work.” Dr. Fleischer cautions families not to try this at home, “You can’t just put a bit of peanut under a band-aid, there is a lot of technology involved in this patch.”
Buddy is completing his third year of the study this spring, and Tamara is hopeful about his results. “So far he had a food challenge after year 1. They did blood tests and skin tests, and they looked like they are doing what they should be doing. The blood and skin tests were less reactive, and he could tolerate 10 times the amount of peanut he could from his initial food challenge.” At age 6, he reacted after ingesting only a quarter of a peanut, and now can tolerate much more. This is huge for children like Buddy, meaning that that peanut residue left on the table by a peer might not be life threatening to them any longer. Families can breathe easier and navigate social situations with less anxiety.
“When I talk to people, I describe living with a food allergy like being a computer. The antivirus is always going in the background to guard against attacks. The guard is never down. When we’ve had an attack that can be taxing on the computer (or us).” The initial results from Buddy's trial mean that the family can experience less attacks, so to speak.
Tamara wants other parents to know that she does feel hopeful for her son and others. “I listen to a lot of conferences, and the underlying message is that food allergies and related conditions are being explored. There is hope for treatment, not a cure. It is okay if families choose not to explore this as we did because it is not the right time or right choice for them. Not everyone needs to explore this — if [allergen] avoidance works for their family, that is OK, too.”
More than anything, Tamara wants to encourage families like hers to be open with their allergist if they have any anxiety or fear so that they can be connected to an appropriate counselor. “The more open we are, the more they can help.”
*Not his real name.
Editor's note: This article has been updated to clarify the current status of the patch's application process with the FDA.