We’re delighted to share a guest blog post from FPIES mom Kaylee. Kaylee’s daughter Bella (age 3 ½) has outgrown 3 of her 4 FPIES triggers and is well on her way to outgrowing her last trigger (soy). In this post, Kaylee shares her family’s journey to outgrowing FPIES and offers helpful guidance for other parents currently on the road. Thanks to Kaylee for sharing this powerful and inspiring message!
“Blech! Have you tasted that stuff?”
This is what we heard at every pediatrician appointment and ER visit when we informed doctors that Bella was on Nutramigen. I don’t blame them; the stuff smells—and tastes—absolutely disgusting. (Yes, I have tried it. And no, I’d never like to try it again!). But Bella found it quite fantastic and asked for it multiple times a day. Most importantly, she thrived on it.
But recently, she passed cow’s milk—a former trigger in our FPIES journey. Of course, OF COURSE, this was the result of an accidental ingestion at daycare. Better yet, it happened at the end of the day when her friend’s sippy cup had been sitting out a good eight hours. I figured, if nothing else, she’d get sick simply from spoiled milk.
I set up a game plan and brought her home. With my husband out of town, my dad came to stay the night.
And we kept watching.
AND THEN SHE PASSED.
…and she kept passing. Peas, beans, and more milk. All former triggers. We held our breath and watched her eat—and pass over and over again! Doctors told us she’d probably outgrow FPIES by 3 or 4 years of age, but it was just too hard and too far out to believe. And here we are…
This series of photos documents her last sippy of elemental formula. It’s awesome, and my head is still spinning in disbelief. But I think people expect me to be sobbing tears of gratitude. Yes, there are tears, and some of them are of deep, deep joy. But some of them are tears of relief, anger and exhaustion. I feel like the soldier, the gladiator and warrior, who just stepped off the battlefield—too beat up to fully bask in the glory of victory.
Many of you, I know, are still on the battlefield. You are in fight mode. Every day, every minute you are fighting for your child. Be it the 20 times you wash your hands while cooking your meal and their meal. Or the third meeting with the daycare provider updating and advising on how to properly care for your child and keep them safe. The advocacy. The late night Google searches. The extra thought that goes into leaving the house to ensure your child has enough (safe) food. The doctor appointments. The ER visits. All of it.
You are fighting. And let me tell you: you are a warrior. Writing from a place of hindsight, I’d like to encourage you that while you fight, you also give yourself permission to do these things:
BE AGGRESSIVE BUT TAKE IT SLOW. As scary as FPIES is, it can almost paralyze a parent from any sort of action. And the truth is, there is no set way to do it right (or wrong!). Take time to set up a plan for yourself. For us, we set goals of how often we wanted to introduce something, and we factored in holidays and travel plans knowing that introducing foods required an ER at bay. If she passed, we kept going. If she failed, we gave her body time to fully come back. Milk gave us weeks of loose stools—not horrible—but bad enough that I held off until her stools returned to her version of normal before adding the next new food.
FACE THE FEAR. “Dan [that’s my husband], do you think we should try this one?” I found myself asking this with each new food, even if it was something I knew in my heart she’d be fine eating. I was just too scared. I needed to hear him say out loud that we should try it. Talking about the potential risk aloud also helped me embrace that risk. I’m not sure the fear ever goes away (until you start seeing them past former triggers). But both fear and hope can sit together. So let them!
GRIEVE. FPIES can bring with it countless waves of grief. On those days, it’s okay to sink your feet deep into the sand and let the waves hit and wash over you; some days, it will knock you right over. You may lay there for a while but you’ll always stand back up.
My most vivid memory of that grief: It was Thanksgiving 2012 and we put Bella down for her nap so that the rest of us could make Christmas cookies as is our family’s tradition. My heart ached. I watched all her cousins roll, frost and stuff their faces full of sugar and fun! I had intentionally put my child to bed so that she would avoid a chance of consuming trace amounts of a trigger. Later, we sat at the picture perfect table, full of food and holiday decorations, surrounded by family. Bella wasn’t eating solids at that time for reasons numerous and complicated but she had her big treat: ice cubes. I hid my face in my hands with tears streaming down. On the day when I was supposed to be most thankful, I was aching. It’s only in hindsight that I realize how necessary those moments of grieving were.
REST. Tired. Bone-aching tired. We had so much puke in our lives and so little sleep. I consider myself vibrant and young at heart, but that first year I was walking through a fog. Everything exhausted me. When I say rest, I encourage you to seek out sleep as much as possible. But I’m also talking about the kind of rest where you just stop and let yourself be. Renew. Journal. Walk. Reflect. Let the sun hit your face. You may only find it in 5-minute increments here and there—but when you find it, embrace it. Soak it in. Let it fill you up ahead of the other chaotic and exhausting moments of the day.
FPIES and the journey itself taught me and my husband about food and taking care of our bodies to a depth we didn’t anticipate. We also know now that our marriage can withstand the tests of sleepless nights, puke-filled car rides, and unexpected, unanticipated hardship. While no parent wants to watch their child journey through FPIES, we’re thankful for the good that can come from the hard stuff of life.
You (warriors, soldiers, and gladiators) are held so close to our hearts. We may be in the tent of recovery but we have not forgotten what it feels like to be in the thick of the fight. Today, let our victory be yours too. Trust that you will also survive—even thrive in and through—this journey of FPIES.