Our FPIES Story
Nichole L. Huff, Ph.D., CFLE
My firstborn was a textbook baby, which was fitting because I prepped for motherhood as best I knew how—I studied. I read parenting magazines and child development books and perused baby websites. Surely my daughter read them too, never missing a milestone. Parenthood seemed to come naturally, as did our decision to try for Baby #2.
As the ever-so-experienced mom of an 18-month-old, my prep for our son’s delivery was much more relaxed. After all, I’d been there and done that. How different could another baby be?
And so our FPIES story began.
At 11 days old, after an evening feeding, my son began to vomit. Profusely. From his nose and mouth came what appeared to be thick, undigested breast milk. I tried to clear his airways, but couldn’t work fast enough. He began to choke, his body paled, and his arms and legs became lifeless. My mother and husband worked to keep our son alive while I shielded our daughter from the scene, called 9-1-1, and waited for the ambulance to arrive. My son’s cries never sounded so beautiful.
The hospital personnel were perplexed, as was the pediatrician during follow-up care. It’s rare that a baby has a reaction to his mother’s milk, I was told. After trying an elimination diet to no avail, I offered my son cow’s-milk formula. The first time, he did well. The second? Two hours later, as we attempted our first family-of-four road trip, I yanked my eight-week-old from his infant seat while my husband pulled off of the Interstate. My son’s vomiting was once again intense and he became pale and lethargic. We spent the next two hours parked at a gas station as I held my baby boy, too scared to move.
Following my mother’s intuition (as our pediatrician was of little help, telling me It’s normal, that It’s likely reflux, and that Babies that young rarely have milk allergies), I tried a soy-based formula containing no milk derivatives, which seemed to do the trick. His reactions didn’t return until he was seven months old after having tried a jarred baby food. Like clockwork, two-to-three hours later, my son was throwing up, losing color, and his body was becoming limp. I retrieved the food label, and sure enough, milk was an ingredient.
Luckily for us we had relocated for my husband’s work a few months prior and found a fantastic pediatrician who closely monitored our situation. She also promptly referred us to a pediatric allergy specialist who properly diagnosed our son with Food Protein-Induced Entercolitis Syndrome (FPIES), specific to milk proteins. She equipped me with information, taught me how to properly read food labels, and educated me so that I could educate those who interacted with my son.
Following his diagnosis, I cried. A lot. Partially because I was so relieved to have a medical answer to the food struggles we’d been having. But also, I cried for the loss of normalcy that my son would experience. I grieved for him, and for the “textbook” childhood he wouldn’t have. I can remember sobbing uncontrollably in the aisle of a grocery store wondering if my son would be able to have a first birthday cake. I decided that day that, yes, he would. If my son had FPIES, then I would become an FPIES expert. I learned to remove the world “normal” from my vocabulary, deciding to not only accept his dietary restrictions, but to celebrate them. (And slowly understanding that no child was textbook, no family normal, and that most people were managing a life stressor of some sort.)
In the weeks and months that followed, I spent countless hours researching FPIES. I spent evenings alone at different grocery stores, walking each aisle, carefully reading food labels. I learned which brands were safe and which weren’t. I tried recipes and adopted new cooking strategies. I learned to make safe substitutions while cooking so that—quite literally—my son could not only have his cake, but he could eat it too.
Being the mom of a kid with a food allergy is challenging. There is the constant fear that one wrong bite could send your child into shock or make them terribly sick. Having now managed my son’s FPIES daily for four years (and having experienced a failed oral-food challenge at age two and a half), my approach to parenting has evolved. We’ve taken those scary steps that every parent of a special-needs child faces. From leaving your child with a babysitter to selecting a safe preschool to attending birthday parties and everyday events that are otherwise taken for granted. And we’ve not only survived—we’ve thrived in spite of it all.
In the months to come, I will talk more about parenting a child with FPIES—not only as an FPIES mom, but also as a professor of child development and family relationships. From talking with healthcare professionals, to friends and family, to educators, to childcare providers, to talking with your FPIES child. I’ll discuss ideas for making your child feel included in a world that often ostracizes differences. I’ll explore ways that you can take care of yourself (despite feeling overwhelmed as you manage your family’s own FPIES story). If you have a special topic that you’d like me to address, please let me know.
Nichole Langley Huff is an assistant professor and Extension Specialist at North Carolina State University. Dr. Huff has a Ph.D. in Family Sciences and a M.S. in Marriage and Family Therapy. She is a Certified Family Life Educator with the National Council on Family Relations. Her areas of research include child development, parent-child communication, and bio-psycho-social health. Dr. Huff also has a weekly parenting blog at http://soapboxmommy.com/