The blog below was written by my niece- an incredible young woman, mother, and doctor. She offered to tell her story of the challenges and fears of having a child with severe food allergies. It is full of advice, reflection and lessons that we feel are important for all to hear. Please take some time and read thoughtfully. Our thanks to Dr. Valerie Edwards for her honest and heartfelt story.
Here is is:
Phineas was diagnosed with food allergies at eight months of age. He was fed a small piece of french bread then broke out in hives, began wheezing, and vomited repeatedly. His second, and more severe, anaphylactic reaction occurred two months later when I gave him a spoonful of yogurt. After a scary trip to the ER, some epinepherine, albuterol, benadryl, and steroids, he recovered. Follow-up testing (blood work by his primary care doctor and skin testing by an allergist) showed what at the time seemed like an impossibly long list of life-threatening foods. My dreams of sharing goodies at the bakery, cooking meals together, and tasting exotic foods while traveling with my son quickly ended. Because of his allergies, my little boy could not even safely eat off of a McDonald’s menu (blessing in disguise?).
Despite the life threatening allergies Phineas is a normal kid. He’s a two-and-a half year-old dynamo. He is everywhere, into everything, talking to everyone, and moving all the time. Yet he already knows (on some level) that he has food allergies, and that he can’t eat all the foods everyone else eats. He has been taught not to take food from anyone except mom and dad, and to politely say, “No thank you. I have allergies”. My husband and I try our best to foster a normal childhood, treating Phineas like any other kid while watching him like a hawk until he’s old enough to understand what his allergies truly mean.
I appreciate this chance to share our thoughts on raising a food-allergic kid with the readers of this blog. Like many of you, our family is committed to health, food, and fellowship (especially the fellowship that occurs around food!). I want readers with these qualities to hold in their minds the picture of a child who has food allergies. I hope that by hearing about Phin, you will take food allergies seriously. I also hope you will have the courage to include kids with allergies in your activities and welcome them into your homes.
When he was diagnosed as an infant, it was almost overwhelming to us. We were afraid of another severe reaction, worried about leaving him in the care of those who didn’t know how to manage allergies, and sad about everything he might miss out on later in life. We became acutely aware of a huge vulnerability in him. To cope, we found supportive resources. There are great websites, support groups, and advocacy groups out there. There are a number of excellent cook books as well. On Phineas’s first birthday I felt triumphant when I baked him a wheat, egg, dairy, and soy-free cake that was actually quite tasty. He has had testing done by his allergist a few more times. He has outgrown some major allergens - wheat and oats (yippee!), while we’ve learned of some new ones too- strawberries and salmon (darn it!).
Every day our family is keenly aware of foods and drinks - both “Phin-friendly” and not. We carry an “epi kit” wherever we go. All caregivers (babysitters, grandmas and grandpas) are trained on how to use the epinepherine autoinjector pen. We’re nervous about sending him to preschool next year. We watch him closely at parties and the playground. We bring his “Phin-friendly” foods wherever we go (including pre-made meals to restaurants). When we travel, we get a motel room with a kitchenette. When we go to birthday parties, he brings his own “Phin-friendly” cupcake. We try our best to be cautious, prepared, and as easy going as possible for him.
What can families do to accommodate and normalize the lives of friends or loved ones with food allergies? Here are five simple things you can do:
1.Be aware that severe “type-one” food allergies (the kind that cause anaphylaxis) are real and on the rise. If a person tells you that she (or her child) has food allergies, don’t question it. Also recognize that these allergies are different and cause more severe reactions than lactose or gluten intolerance (which are also on the rise!).
2. When hosting kids at your house, serve meals and snacks at a clean table, and wipe off kids hands and faces after they eat (one might argue that such habits teach all kids good table manners anyway).
3. When hosting parties, think twice about putting out highly allergic foods such as nuts. If you do put them out, keep them out of the reach of children.
4. Always ask a parent if it OK to share food with their child- never hand a child any food unless you know for certain that he or she has no food allergies (or diabetes, or another food intolerance for that matter).
5. If you take care of a child with a food allergy, learn the signs of anaphylaxis, how to use an epinephrine auto-injector, and discuss an allergy action plan with the family.
This great vulnerability in my toddler gives me an enormous appreciation for each day that I have with him. I’ve adjusted some of the dreams that I had for us. We still bake cookies together, we still travel together, we still enjoy dates to the bakery together. We modify our expectations and the food preparation to make these dreams possible. After all, it is the time with my son that I truly cherish.
Two wonderful resources to learn more about food allergy:
The Food Allergy and Anaphylaxis Network: http://www.foodallergy.org
Kids With Food Allergies Foundation: http://community.kidswithfoodallergies.org
Mother Earth Meals is an Oakton-area website that "focuses on healthy eating and promotes eating a diet full of cancer fighting foods."