I never thought my diaper bag would save a life. But the EpiPen that I carry in that diaper bag serves as a reminder that my child’s life could be in danger at any time, in any place. I need to be prepared to recognize his allergic reaction, stab him in the leg with the EpiPen for 10 seconds while holding him down, and get emergency help ASAP. All while keeping his 16 -month-old twin brother safe, too.
The challenge of food allergies hasn’t been the countless trips to the dermatologist when my son’s face, legs, ankles and diaper area were weeping, seeping, and raw. It wasn’t the day my mother held him down while a nurse drew blood from his tiny veins and I paced the hallway holding his brother, waiting for his screams to erupt the silence. It wasn’t giving up dairy and eggs while breastfeeding. It wasn’t even the morning my husband awakened to find the baby’s entire face swollen so severely that we couldn’t see the whites of his eyes–and within minutes we were on our first ambulance ride.
The biggest challenge is the day to day. His allergies include wheat, eggs, peanuts, mustard (and something in California Baby shampoo and in the local market’s fruit salad and maybe more). Foods he can safely eat, like sweet potato and carrots, he refuses. Foods we should try, like fish and strawberries, scare me. I like that EpiPen capped and unused. It makes me feel better.
I’ve become a tenacious label reader. If the label has more than eight or 10 ingredients, I just put it back no matter if it’s gluten-free, egg-free, and contains no genetically modified ingredients. The more ingredients, the higher chance for a reaction, the higher chance I won’t be able to nail down exactly what caused a problem. And with food allergies, the “problem” can range from a few hives on his face to anaphylactic shock resulting in death.
Does that sound dramatic? Unfortunately, blood tests and skin prick tests confirm an allergy but cannot detect how allergic you are to a food. You don’t know until the reaction happens. And (!) it could be a mild reaction one time and an anaphylactic reaction the next. As a friend of mine told her parents, bringing peanut products into my house is like handing my toddler a loaded gun.
He and his brother won’t be attending preschool in the fall. On a recent tour of a nearby half-day preschool program I spoke with the director about food allergies. The parents are alerted that a child has allergies. Check. The child’s photo, a list of his allergies, and instructions are posted by the classroom door. Check. Teachers are taught how to use an EpiPen. Check.
At the end of our conversation the director said, “We are a peanut-free school but I can’t stop a child from eating a peanut butter cracker on the car ride to school.” That sealed it for me. I instantly pictured my future 20-month-old boy throwing up, in hives, and not breathing while his preschool teacher drank her coffee and read a book to the class.
“Is he still allergic to wheat?” my friends ask. “Can he have some of this?” my parents, who find great joy in feeding their grandchildren, want to know. He’s a boy in a bubble. At 16 months, he doesn’t understand how I’m protecting him. Maybe one day he will outgrow these allergies and we can again eat matzah at Passover and kugel at Rosh Hashanah. Maybe one day he will go to a birthday party and eat cake. For now, he’ll have to eat his whole milk yogurt, applesauce, and rice cakes with an EpiPen on standby.