What Parents Are Not Told After a Child’s First Food Allergy Reaction.

What Parents Are Not Told After a Child’s First Food Allergy Reaction

A recent research study conducted by the Elijah-Alavi Foundation and Indiana University Indianapolis, examined how parents experience emergency care after their child’s first severe food allergy reaction.

The study, led by Thomas Silvera,MSHS-PH MA Emilie R. Madsen,PhD, Jennifer Bute, PhD, Clarissa Cheslyn, MA, and Maggie Unruh, MA, reveals a critical gap in what families are told before they leave the hospital.

When a child has their first food allergy reaction, the emergency room becomes a place of urgency, fear, and survival. Medical professionals work quickly to stabilize the child. Parents often hear the word anaphylaxis for the first time. Then, once the immediate danger has passed, families are discharged and sent home. But what happens after that moment is just as important as the emergency care itself.

Nearly 40 percent of parents in the study reported that they did not feel prepared to prevent or respond to another allergic reaction after their ER visit. Many parents indicated they were not given sufficient information on how to avoid allergens, how to read food labels, what biphasic reactions are, or when and how to properly administer epinephrine. While most parents felt listened to and emotionally supported by medical professionals, very few were provided with the practical tools and resources needed to cope with what comes next.

Food allergies affect 1 in 13 children in the United States. For many families, the first reaction occurs before they even know their child has a food allergy. This means the emergency room is not only a place of treatment. It is often the first and most important opportunity for education. The research also found that parents of younger children were less likely to receive information than parents of older children, a concerning finding given that children ages 0 to 5 are among the fastest growing populations diagnosed with food allergies and are often unable to communicate their symptoms clearly.

Emergency care must extend beyond stabilization. It must include education, guidance, and clear next steps for families who are entering a new and frightening reality. Parents should leave the hospital with knowledge, confidence, and access to lifesaving information, not just discharge paperwork.

This research is helping to inform how we approach education, training, and advocacy through the Elijah-Alavi Foundation and how institutions can rethink the role of emergency departments in preparing families for ongoing food allergy management.

Because for families facing food allergies for the first time, what happens after the first reaction can determine what happens during the next one.