Allergist Mom: What My Food Allergic Kids Taught Me
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.
A Role for Follow-up
I feel that we, as allergists, need a better way to more thoroughly address the real-life issues that so often plague the lives of food allergy families. There must be a stronger link between food allergy families and the allergist’s office.
What would this look like? Maybe it’s a mandatory second appointment with the allergist or a nurse, or a one-on-one family meeting with a veteran food allergy family during which they share their favorite sources of information, recipes, tips and support services. Perhaps it’s a follow-up phone call the evening after a food challenge or group meetings run by the allergist’s office for his or her patients.
Since the completion of my fellowship, I have not gone back to seeing patients in the clinic and I have struggled to find the best way for me to serve the food allergic community. In the future I would love to be a part of a follow-up appointment as both the allergist and the veteran food allergy mom, but until I can make this concept a reality back in the hospital or through consultation, I started a blog in an attempt to do this virtually. Through this blog I provide education and advocacy, first-hand experience and mostly, friendship.
When I began to fall apart in this allergic life, it was with the support from my family, my medical colleagues, and other food-allergic families that I was able to be put back together again.
I want to be one of the people who help to revive and strengthen other food allergy families. I want them to remember exactly where they were when their heart, once broken by food allergy, finally started to heal.
Dr. Sarah Boudreau-Romano is now the director of the Food Allergy Support & Education program at Lurie Children’s Hospital in Chicago. Follow her “the Allergist Mom” page on Facebook.
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