Allergist Mom: What My Food Allergic Kids Taught Me
The Kitchen and Grocery Store
When I walked into my house after the appointment, I went directly to the kitchen. I have always believed that our home should be a safe haven for my children, so I began my quest to rid the house of milk. I started reading labels. As I read every label on every box of food in my kitchen, I turned numb. I threw away pudding, cheese, sticks of butter, bags of chips and boxes of cookies until my cabinets and refrigerator were nearly bare. No one warned me how hard it would be to go back into my kitchen for the first time.
After putting the boys to sleep, I went to the grocery store. As I wandered the aisles trying to find food without any milk ingredients, I noticed that my usually overflowing cart was sparse. I knelt on the ground to read the ingredients of a rice drink and caught a glimpse of a pint of ice cream in another mother’s cart. A feeling that I rarely had felt in my life overwhelmed me.
As I fought back tears, I realized what it was. Jealousy. I was truly jealous, deep to my core and then, immediately, ashamed. I wanted her cart. I wanted her convenience. I wanted pizza and ice cream, cheese sticks and yogurt. And I was ashamed that my desire for her food made me feel disdain toward her. No one told me that the grocery store could be this painful.
When my head rested on my pillow that night, I remember a long pause in my breathing during which all of the costs of this diagnosis hit me. I could not believe this was happening. And for the first time that day, I actually let myself think about the unthinkable: my beautiful, sweet child could actually die from eating the wrong food. A wave of anguish swept over me. No one told me about this moment, either.
It was several months later on a pretty summer afternoon when it nearly did happen. I was on call, so my parents were at our house helping with the boys. I was so excited to see the kids when I got home from work that I let them eat a little treat before dinner: homemade allergy-safe cookies.
Gino’s Big Reaction
It was not even a minute after his first bite when my dad yelled out my name and carried Gino to me. When I took him in my arms, I felt his weight; it is the strongest memory I have of that moment. He wasn’t holding any of it on his own. He was completely limp in my arms.
His coloring grew pale and grey, and he began to turn blue around his lips, so I screamed for the EpiPen Jr. Even though I can put teeny tiny umbilical lines into two-pound babies without a tremor, with my own child, I was shaking so much that I could hardly remove the gigantic gray cap from the auto-injector. When I finally did, I jabbed it into his thigh with a thud and counted to 10.
Gino began vomiting profusely, mucous was bubbling out of his nose, and he was turning more and more blue. I could feel myself losing him and I believed that he was dying in my arms – dying from a cookie. Specifically, it would turn out, not from milk, but from the egg in that cookie.
Thankfully, the epinephrine began to work. His coloring returned and I felt an overwhelming sense of relief as he started to open his eyes again. That night in the hospital I remember crying and clutching to Gino for dear life, and thanking God that I could.
The Allergy List Grows and Grows
After this reaction, the list of foods Gino had to avoid due to serious reactions began to grow and grow until it included milk, egg, wheat, corn, oat, barley, grape, mustard, sesame, green pea, pinto beans, lentil beans, garlic, chicken, turkey, peanut, tree nuts, fish and shellfish.
Gino’s twin brother, Milo, has severe allergic reactions to soy and egg. Our youngest, Lucy, had anaphylaxis to milk at four months old requiring two doses of epinephrine. I spent most of the first several years of life raising children with multiple life-threatening food allergies feeling woefully unprepared. I felt alone, scared and confused.
I often think about why I felt this way and what could have been done to lessen those feelings.
Next page: What we can do as allergists