Imagine sending your child off to school every morning, not knowing if accidental exposure to common foods like peanuts, wheat and eggs may produce a potentially fatal allergic reaction. Will your child know what to do if she has a reaction? Will your child's teacher? Did your child remember to bring his life-saving epinephrine?
Welcome to the world of food allergy parents—moms and dads of the one out of every 13 U.S. children and adolescents who have a food allergy. When an allergic reaction to a food protein occurs, the body’s immune system releases chemicals into the bloodstream to attack it. If not treated immediately with epinephrine, these reactions can lead to anaphylaxis, resulting in airway constriction, a sharp drop in blood pressure and even death.
Sarah Boudreau-Romano, MD, an attending physician in Ann & Robert H. Lurie Children’s Hospital of Chicago's Division of Allergy and Immunology, knows first-hand about these challenges. She is the mother of four children, three with food allergies, and author of the blog, The Allergist Mom. As program director of the division’s Food Allergy Support & Education (FASE) program, Dr. Boudreau-Romano draws on her own experiences when she leads the hospital's monthly "Essentials of Food Allergy" workshops for parents.
FASE is an initiative of the Division of Allergy and Immunology, a national leader in food allergy research, and the first program of its kind in Illinois. Physicians in the division are studying how food allergy develops, as well as new treatments to reduce risk and severity of food-induced reactions.
"The Food Allergy Support & Education program fills the gap between medical management and living with food allergy in the real world—a world in which patients and families interact with many people who do not understand food allergy," says Jacqueline Pongracic, MD, Head, Division of Allergy and Immunology.
Workshop topics include the basic science behind an allergic reaction, food avoidance strategies and a review of an emergency action plan for when a child has a reaction. The meetings also provide an opportunity for parents to discuss common experiences and challenges.
"The feedback has been remarkable," says Dr. Boudreau-Romano, who plans to feature guest speakers at future workshops, including hospital nutritionists and psychologists. "When a child is diagnosed with food allergy, it's easy for parents to be overwhelmed with questions about what this diagnosis means for them and their child, and how they can best cope. Having these questions answered helps to empower the parents, and puts them in a better position to care for their child."
Zina Flores-Turner learned that her daughter, Bella, was allergic to peanuts and tree nuts after Bella had an anaphylaxis reaction to peanut butter when she was three years old that required a trip to a hospital emergency department. Bella currently receives care from Lurie Children's allergist Anna Fishbein, MD, and also attends the FASE program’s Kids' Food Allergy Hangouts.
"The team approach at Lurie Children's has had a great impact on Bella's health and quality of life," says Zina of her daughter, now 12. "Also, her confidence is dramatically better."
As part of the program's outreach efforts, Dr. Boudreau-Romano visits Chicago-area schools to train teachers and other employees to recognize and respond to a student's allergic reaction, including instruction on using an epinephrine auto-injector. Dr. Boudreau-Romano recently initiated live video webinars and Facebook Live events, and plans to start a separate "hangout" for teens.
"We want families to come to Lurie Children's for all aspects of food allergy care, and two important components of that relationship are education and emotional support," she says. "Ultimately, we want parents to walk out of these workshops feeling more confident about advocating for their children and reacting to an emergency situation in a way that can be life-saving."
This article originally appeared in the Winter 2017 issue of Heroes magazine