By Erica Gadbois
Brooks Diaz, 8, has never known a life without serious food allergies. His mother, Gretchen Diaz, says it all started when he was just a baby. Repeated, intense bouts of eczema found him in the care of Lawrence Eichenfield, M.D., chief of the Division of Pediatric and Adolescent Dermatology and co-director of the Vascular Lesion and Birthmark Center at Rady Children’s Hospital-San Diego and a professor for the Departments of Dermatology and Pediatrics at University of California San Diego School of Medicine. Suspecting Brooks’ irritating skin condition may link to an allergic trigger, Dr. Eichenfield suggested Gretchen and Brooks’ father, Jason Diaz, seek allergy testing for their infant.
Upon Dr. Eichenfield’s recommendation, the Diazes connected with Stephanie Leonard, M.D., director of the Rady Children’s Food Allergy Center and an associate clinical professor for the Division of Allergy-Immunology-Rheumatology within the UC San Diego School of Medicine Department of Pediatrics. “She tested him for milk allergies and did a food challenge, and nothing,” Gretchen recalls, “but then we went to the ‘top eight.’ He came up crazy-high for peanuts, and also had a response to tree nuts.” According to Food Allergy Research & Education®, eight key allergens — milk, eggs, peanuts, soy, wheat, tree nuts, fish and shellfish — are most frequently linked to Americans’ severe food-based reactions. The family was sent home with an EpiPen® prescription and an extensive set of guidelines to keep Brooks as safe as possible.
As he got a bit older, Brooks’ peanut and tree nut allergies persisted, and he also developed new allergies. “We found out he was allergic to eggs because I made him scrambled eggs and he broke out in hives; I gave him sunflower butter because he couldn’t have peanuts or almonds and his eczema got really bad; I gave him hummus and he broke out because of the sesame,” Gretchen explains. “He also has asthma and environmental allergies, like pollen. He’s outgrown almonds and eggs, but he’s still scared to eat eggs because he’s afraid to have a reaction.”
Brooks’ fears are understandable. In his lifetime, he’s experienced numerous incidences of anaphylaxis, a potentially life-threatening allergic reaction. “As opposed to hives, which just affect the skin, anaphylaxis affects multiple systems of the body. It can cause trouble breathing and low blood pressure, and people can lose consciousness. It can be life-threatening,” explains Dr. Leonard. His first encounter with anaphylaxis was at about 2 years old, at preschool, but some of his most severe happened recently. During one, Gretchen says he came into contact with peanut shells and likely inhaled a small amount of peanut from another child snacking behind him at an outdoor event — for someone with a significant allergy, that’s often all it takes. “That was the first time I actually thought, ‘this is it,’” she recalls. “It was really, really, really bad.” And just last Christmas Eve, while exploring Disneyland with his parents and 10-year-old brother, Reece, Brooks wound up in the hospital. The family spent the holiday by his bedside as he recuperated and, to this day, they can’t say for sure what caused Brooks’ frightening response.
Gretchen notes that along with Brooks having substantial anxiety surrounding his allergies and the potential for anaphylaxis at any moment, her entire family faces similar fears. For instance, after her son’s initial anaphylaxis, Gretchen says she felt she had reached a point where she could calmly explain what happened to a friend. Instead, she suddenly went into a full-blown panic attack. And Reece, who has been with his brother through all of his harrowing moments, sees a therapist to help him process his trauma and develop calming and coping strategies. “It obviously impacts Brooks the most, but it’s very difficult for all of us,” says Gretchen. “It’s affected our whole family life — it’s nerve-wracking; we don’t go to restaurants except a couple we feel are totally safe, because he’s gotten reactions when we’ve been out to eat. I’ve even lost friends because they’ve told us they feel like we can’t do anything.”
Keeping Brooks safe and included once he started elementary school also proved to be a much larger challenge than anticipated. Gretchen put together a comprehensive 504 plan for her son, which is an agreement between schools and families that recognizes a student’s disability and puts measures in place to protect their needs while supporting equal opportunities for academic achievement. 504 plans fall under federal law — they’re a component of the Rehabilitation Act of 1973, which works to safeguard individuals with disabilities from discrimination — and require many formal, detail-rich sections and an in-depth evaluation process. As a special education professional, Gretchen had a great deal of experience with the plans, which she notes was an asset when tackling Brooks’ directive. Still, between creating the plan, going through the approval process and overseeing Brooks’ day-to-day care, she at one point had to quit her job to help balance out the time and focus required.
Gretchen says Brooks’ school has done the best they can to be compliant with his plan, but that it doesn’t alleviate all struggles. For instance, his family has received backlash from many parents of Brooks’ peers, including everything from bullying over social media to attempts to get a food allergy awareness assembly canceled. Sadly, this is fairly common, Dr. Leonard enforces. “Studies show that children with food allergies are at risk for bullying and it doesn’t only come from fellow students, but even school staff and other parents. It’s important for schools to be aware of this risk so bullying can be addressed when it happens and incorporated into prevention strategies.”
Gretchen recognizes it can be difficult for parents unfamiliar with allergies to embrace what may seem like excessive precautions, and she emphasizes how much it means when they take time to understand, relate and be a partner. “Kids like Brooks may look fine, but they’re dealing with life-threatening things every single day. If I could sum up what I’d like the community to be more aware of, I’d say have empathy, ask friendly questions and realize these are serious things families deal with. Think, ‘what if this was my child?’” She also says small gestures to make kids with allergies feel included, such as asking what they need to be safe at birthday parties or buying a few special pieces of Halloween candy to pass out, have an incredible effect.
Currently, there isn’t a cure for food allergies, so Brooks and his family are focused on managing what’s in the moment and exploring innovative options to keep him as healthy and worry-free as possible. For the past few years, Brooks has been a part of Dr. Leonard’s peanut allergy patch research study, which has participants apply a daily skin patch containing small amounts of peanut allergens and includes occasional long visits to the clinic, during which he is challenged to a placebo or peanut allergen to see if the treatment is working. If he develops symptoms during the challenge, he immediately receives treatment, and every aspect of the study is overseen by an expert care team. The goal is to see if these small doses of peanut can rewire the immune system so it no longer responds to similar amounts, or responds less severely. “It won’t get rid of his allergies, but we’re hopeful it will prevent him from anaphylaxis if he’s exposed when he’s out and about,” Gretchen says. “He can sometimes get frustrated with doing his patches every day, but he’s a trooper. We talk about how it’s important for him to do that to help other kids.”
Brooks will also soon have a wagging, furry ally to help him ward off some risks for severe reactions: a service dog trained to sniff out and identify harmful allergens in the air and on surfaces. Sparky the chocolate lab has been working on his skills since the Diaz family sought him out last year, and he’ll be ready to join the household this summer. Brooks is thrilled to soon have the added comfort in such a loveable package, and Sparky is expected to help him significantly relieve his anxiety, especially in situations such as eating lunch with his friends at school. Gretchen says Sparky will be life-changing for her son, and that he’ll have more time and energy to focus on the important stuff: riding bikes, making up jokes, playing Pokemon and deciding exactly what kind of scientist he wants to be when he grows up.
Published June 2019