FPIES: Simple Words, Complex Realities

By Nichole L. Huff, Ph.D., CFLE

One evening last week, in reviewing the papers sent home in my kindergartner’s daily folder, I noticed a flyer for a school fundraiser. An ice cream social. On Friday my son could have a big scoop of ice cream from a variety of flavors, and could even top it off with his choice of sundae toppings. A simple flyer; a simple event. A good cause even, as the profits were to support overseas relief and education efforts. But to me, an FPIES Mommy, this flyer, fundraiser, and event were anything but simple.

No, this represented one more thing in which my son couldn’t participate. My 5-year-old, acute FPIES to milk proteins (with life-threatening vomit-to-shock reactions since birth), could not have his choice of ice cream flavors. He couldn’t add whipped cream and syrup and sprinkle it with candy toppings. Instead, because this event like so many others centered on food… he could not readily be a part of it.

simple event yes, but a complex reality for our son.

The truth is, our reality is complex. My son has a special need. His need doesn’t involve physical, social, or learning accommodations; instead, his need requires dietary considerations. And that’s pretty complex given we live in a society focused on food. Fundraisers, potlucks, receptions, parties, dinners, birthdays, holidays—food is always involved. But for us (like other FPIES families), when food is involved, our child is often left out.

Thankfully Friday has come and gone. To address the fundraiser, I did what any FPIES Parent would do. What we do day-in and day-out. I took a deep breath and turned to my son, who was finishing his homework at the kitchen table. I held up the flyer and said, “Hey, buddy, did you know they are having an ice cream fundraiser at school this week?” As he nodded, face solemn, I continued, “Well, Mommy will send in a bowl of your ice cream on Friday. I’ll send a note for your teacher to keep it in the freezer until the fundraiser starts. That way, you’ll have a big bowl of ice cream to eat too. Will that be okay?” He paused and grinned, his face revealing an expression of relief, knowing that now he’d also be able to join in the fun.

And then, as I turned back to his folder, I wiped a silent, solitary, simple tear from my cheek.

I know I’m not alone. For other parents like me who manage a child’s special need, whether related to food or anything else, we are the simple champions fighting what often seems like a lonely, complex battle on behalf of our children. In reflecting on the FPIES in a Word campaign, I realize that words like frustrating, emotional, challenging, misunderstood, scary, and stressful quickly come to mind. As we recognize Food Allergy Action month, however, I invite you celebrate the other words that describe our journeys.

We are Advocates.Educators. Protectors. We are Problem-Solvers. Normalizers. Navigators. We are Creative.Resourceful. Flexible. We are Strong. Hopeful. Determined. In a word? We are FPIES Parents: simplifying the day-to-day management of our children’s complex diagnoses.

As the parent of a son with FPIES, Dr. Nichole 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 (CFLE) 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 maintains a parenting blogat http://soapboxmommy.com/