My Son Has FPIES, And I Hate Food Allergy Awareness Month

Photo by Kelly Sikkema on Unsplash

My baby was seven months old the first time he threw up to the point of hypovolemic shock. He had eaten avocado for maybe the fifth time in his little life. He vomited repeatedly, his skin turned cold, and his body went limp. We called his doctor and monitored him all night long with the pediatrician's help. I gave him dropperfuls of breastmilk until his color returned, his body warmed up, and he perked up enough to drink a full bottle before falling into a healing sleep.

This reaction happened again with the next food we gave him and the food after that. We didn’t realize how serious it was until the third food, and then we stopped feeding him solids. His body was telling us that it was tolerating nourishment this way and his doctor approached us with an unofficial diagnosis: Food Protein-Induced Enterocolitis Syndrome. This very fancy medical term essentially meant that my baby was allergic to proteins in food.

The good news was that he would most likely outgrow it by the time he was three years old. The bad news was that there was no guarantee he would outgrow it, no test to see what he was allergic to, and no way to treat it other than to omit offending foods from his diet. And the only way to figure out if a food was a problem or a pass was to feed it to him and wait.

Oh, and virtually no research exists for FPIES because it is so rare.

My husband and I slipped into a blind vortex of constant anxiety, helicopter parenting, and marital strife. Leaving the house required massive preparation. We had to explain to friends and family that while our son looked healthy and well, all food was a potential threat and could land him in the hospital fighting for his life.

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We were told over and over again that we were overreactive and overprotective. We were accused of fabricating or exaggerating his condition. Meanwhile, I had to cut offending foods out of my diet to keep my breastmilk safe. My supply tanked when he turned eight months old, and we had to find a donor who would also whittle down her diet to make her milk safe for our son. That donor was 3,000 miles away and overnighted her milk to us once every three weeks. I found the perfect shortlist of “safe” foods that kept my son’s belly happy and diaper blood-free. 11 magic foods in my diet kept him thriving.

What people didn’t understand then, and what many still don’t understand now, is that life-threatening food allergies don’t always look like anaphylaxis. An Epi-Pen is useless to FPIES kids. Their reactions manifest in their guts, not their lungs. We never knew how many exposures or ingestions would result in a reaction. We never knew what was coming next. I know we weren’t fun to be around because we looked at every single crumb of food as though it was potential poison — because it was.

My son’s world was filled with poison.

What people still don’t understand now, almost five years later, is that no parent would ever choose food allergies of any kind for their child or willingly add it to a family dynamic. No loving couple would ever put their partnership under that kind of unrelenting stress based on an unfounded fear. No mother looks at her child and hopes the thing that makes them special is a thing that will negatively impact their development and formative years.

May is food allergy awareness month. I loathe it. It reminds me that my son, who will start kindergarten in a few months, will probably never outgrow his FPIES allergy to wheat. It reminds me that he is Other, that he will have to be his own biggest advocate and miss out on normal school activities because of a condition he didn’t choose and cannot change.

Awareness months remind me that even though he is resilient, he is still vulnerable.

If you have a family member or friend who suffers from food allergies of any kind, believe them. Take it seriously. Become a safe harbor, an advocate, an inclusive and vigilant friend if you can. Believe the parents who are trying to keep their children safe, and shred your Dr. Google diploma. And if you are unable to do those things, please step out of the way. The rest of us are working hard to keep our babies healthy, our families intact, our marriages above water, and the world just a tiny bit safer for those who need it most.