Living with FPIES: Advocating for Your Child in School and Childcare Settings

Living with FPIES: Advocating for Your Child in School and Childcare Settings
Nichole L. Huff, Ph.D., CFLE

As a mom of a child with FPIES, one of the hardest decisions I ever made was entrusting someone else to care for my son, living with FPIES, for the first time. And, truthfully, for the second time and the third time… and every time that’s followed since. Because every time someone new cares for my son, I have to explain FPIES and everything it entails—the most important of which is what can happen if he’s exposed to a trigger. It’s a bit much to squeeze onto the “Known Allergies” line of standard childcare paperwork.

Needless to say, initially it was just easier to avoid outside childcare. If an FPIES reaction was going to happen, it was going to happen on my clock. Although this approach worked for a while, my “live-life-in-a-bubble” system wasn’t a practical, long-term solution for our family. We had to learn to manage FPIES, and as a dual-income family, this meant learning to advocate for our son in childcare and school settings.

I feel blessed to say that for over three years now, we’ve successfully navigated a full gamut of childcare options (ranging from family members, to babysitters, to Mother’s Morning Out, to church nurseries, to fulltime daycare, to fulltime preschool). Slowly I let go of my fear-driven need for control, and I began to trust others. Instead of being my son’s bodyguard, I learned to be his advocate.

Over the last three years, I’ve followed a few simple F.P.I.E.S. steps when advocating for my child in school and childcare settings:

1. Focus.

When communicating with childcare providers or educators, focus on the facts. The fact is: my child’s safety depends, in part, on the attention given to his food allergy. Every snack, lunch, sippy cup, birthday treat, holiday candy, or crumb on the floor must be monitored. Every time my son eats or drinks something that I didn’t provide, the nutritional label must be read. Text, call, or email me anytime there’s a question as to whether or not a food (or ingredient) is safe. My son’s caregivers must be focused on keeping my son safe too.

2. Plan.

You can never be over-prepared when your child has a food allergy. Always plan ahead. At home, I have any unsafe foods clearly labeled. I have a “safe shelf” where my sitters or son can easily identify quick snacks or meals. I pack a healthy, safe lunch and plenty of snack options each day for my son to take to school. (And in years past when my son ate school-provided meals or snacks, I coordinated with the school to ensure that they knew how to read food labels and identify FPIES-safe foods).  

3. Inform.

When childcare providers or educators initially learn of your child’s FPIES, don’t be alarmed if they’re a little nervous. After all, you’re entrusting them with a lot. Help them learn to take the necessary precautions without treating your child differently. To me, it’s important to inform my son’s teachers that he’s just a normal kid who learns the same, plays the same, and loves the same as everyone else. His diet is restricted, but he isn’t. In our case, he’s just a rough-and-tumble, happy, sweet, smart little boy who can’t have milk proteins.

4. Educate.

Educating yourself on FPIES isn’t enough. You have to share what you know to others. Educate those who teach or care for your child on the essentials of allergy safety. In the case of FPIES, most reactions are delayed, and many need to be treated with fluid or IV resuscitation. With the help of your child’s physician (or using resources like those available at http://fpiesfoundation.org/emergency-care/), create an action plan. Also, most people don’t know how to read a food label for allergens. Educating others on basic allergy awareness is a simple yet effective way to minimize your child’s risk of accidental ingestion. As my son has grown, I’ve also educated him on his allergy and taught him to question the safety of new foods when they’re introduced.

5. Support.

Anyone who cares for my son has my number on speed-dial. I ardently convey that I am available at any time, for any question, big or small. In order to build a thriving, trusting relationship with childcare providers or educators, it’s important that I fully support them in their efforts to care for my son. I ask what I can do to more easily facilitate the management of his FPIES. Sometimes this means providing all of my son’s foods, other times it means visiting the school’s stock room to read food labels. I volunteer to provide safe foods for class parties and I’ve written blurbs for the parent newsletter bringing awareness to my son’s FPIES and offering suggestions for safe treats. By fostering communication between teachers, administrators, and other parents, I help to support the network of people who keep my son safe while I’m away.

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/

Our FPIES Story: Introducing Dr.Nichole Huff

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.

It takes a village to raise a child. 

It takes an informed, understanding, cautious, and collaborative village to raise a child with food allergies.

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/