I’m like you, Mom. Last week, I went grocery shopping, dined out with my family and took the kids to craft club. I’m running on little sleep, lots of caffeine and infinite love. Only in my case, I went to four grocery stores, brought an entire meal at the restaurant and was one discarded goldfish cracker snack away from a crisis. I’m a food allergy mom. I’m only two years into this journey. I have the same concerns and fears I always did. I still approach every new environment with abundant caution (and added anxiety), but I’m growing more confident and better prepared for the road ahead.
According to the Food Allergy Research and Education organization, FARE, food allergy is a severe medical condition affecting up to 15 million Americans, including 1 in 13 children – roughly 2 in every classroom. So, if you have not been in my shoes, maybe someday you will be, or you’ll meet someone like me and my son in your child’s class.
The FDA-defined top eight food allergens are milk, egg, wheat, soy, fish, shellfish, peanuts and tree nuts. We learned about my son’s severe allergies to milk, egg and peanuts when he was four months old and I tried to supplement nursing with formula. Almost immediately, his otherwise eczema-ridden skin swelled with red hives, and he became very ill. I was terrified. Skin scratch tests and blood tests with the allergist confirmed these allergies and the potential for an anaphylactic response.
Like new parents leaving the hospital wishing they had a manual for how to raise their baby, my husband and I didn’t receive a comprehensive set of instructions. We may have gotten a handout and a couple website links. Suddenly we were thrust into a world of antibody titers and epinephrine auto-injectors. It was overwhelming.
I flash forward to imagine when my son goes to preschool and kindergarten, the medical statements to compile, the emergency care plan to develop with school staff, alternate snacks to provide, the potential for bullying, and countless more unknowns. I’m still trying to figure out this lifestyle change (and what’s for dinner), but I’ve learned some valuable lessons so far. Here are some tips and tools I wish I’d been given at the outset:
• Meet with a pediatric dietician. Expanding a child’s diet is hard enough without eliminating an entire food group (in our case, dairy), so our allergist referred us to a pediatric dietician who recommended daily nutrition values and portions based on age, personalized meal options and a list of ingredients to avoid with substitutes. This helps me keep a running list or menu binder of safe foods my son will eat for meal planning purposes.
• Get social. Follow FARE and Kids With Food Allergies, A Division of the Asthma and Allergy Foundation of America. FARE offers a food allergy field guide, food allergy basics and news alerts and ingredient notices sent to your inbox. I printed a food allergy emergency care plan (developed by the Food Allergy and Anaphylaxis Network), which provides step-by-step actions in case of an allergic reaction, is signed by a physician and includes a photo with emergency contact info for use with schools, sitters, etc. Another relatively new local organization, the Northeast Ohio Food Allergy Network, which was founded by a pediatric endocrinologist who is a food allergy mom, shares local events and restaurant experiences. I also follow food allergy blogs, allergy-free lifestyle media, food brands and recipe sites, like www.SnackSafely.com. I get a lot of support from moms I meet at preschool, the PTA or local food allergy speaker events and cooking classes. Recently, I took a raw vegan baking class at Lakewood’s Cleveland Vegan restaurant.
• Read food labels, speak up and ask questions. Reading labels seems like a no-brainer, but some ingredients derived from allergens aren’t so obvious. To familiarize myself, I post a copy of FARE’s tips for avoiding your allergen on the fridge and carry another with me. When I’m uneasy about what’s in a product, I contact the manufacturer. I also read the manufacturing processes for potential cross-contamination via shared equipment. At restaurants, I make my son’s allergies known to the appropriate staff, although a raw fruit or veggie bowl is as far as I’ve ventured to order so far.
• Think beyond food. I mentioned the craft club snack, but what about the supplies themselves? I cringed when my daughter’s preschool class painted with condensed milk, because my son experiences contact dermatitis. It got me wondering what other dangers lurk inside fun lesson plans, so I found Kids With Food Allergies’ list of potential food allergens in school activities. The organization also shares tips to safely celebrate Easter with food allergies.To further protect my son, I wipe down shopping carts and other items likely to come in contact with food allergens, use a high chair cover and pack a cooler bag that unzips into a placemat.
• Adjust your kitchen and shopping routines. I post the epinephrine injector instructions above the children’s choking/CPR chart. To avoid confusion and accidental sharing with my four-year-old daughter, I put a lid on her milk and color code cups, plates and utensils. I keep original packaging for prepared foods and label leftovers. My son still prefers anything in nugget or stick form, but I got specialty cookbooks to try to expand his palate and invested in a nice blender for the smoothies and soups he loves. I pair visits to Whole Foods, Earth Fare and Heinen’s with my kids’ activities around town.
• Pack an emergency kit and know how to use it. My communications background in crisis planning comes in handy as I prepare for the worst and hope for the best. My son’s kit includes epinephrine auto-injectors, antihistamine and fever reducer with current dosage amounts, antibacterial/disinfecting wipes and sensitive skin cleansing wipes, in addition to the standard diapers, creams and cartoon bandages. Thankfully, we’ve never had to administer epinephrine, but we trained with the nurse and practice the procedure to stay on our toes.
• Travel smart. Have packable snacks ready to go. For me, that’s frozen individually wrapped sunflower butter and jelly sandwich pockets, gluten-free pretzel packs, vegan fruit snacks and Enjoy Life brand cookies. When vacationing, I call ahead to find grocery stores that stock our favorite products, then bring a cooler and get a room with a fridge/freezer.
Can you relate? What helpful tips and resources do you have for other food allergy moms?
DISCLAIMER: I may try to be Supermom, but I’m no medical professional. This information is not meant to serve as medical advice. Always consult qualified health professionals and use your own judgment on food safety