Our FPIES Journey

Being an "allergy mom" wasn't something that I ever planned on or anticipated, and yet both of my boys have struggled with food allergies. Our oldest had a milk allergy that was diagnosed around his first birthday, that he has thankfully outgrown. My youngest started his FPIES journey with his first reaction a few days before he turned 6 months old. 

FPIES is short for Food Protein-Induced Enterocolitis Syndrome. It is a rare food allergy, affecting less than 1%  of US children. FPIES reactions typically emerge in infanthood, with first reactions following the introduction to rice and oat cereal. An FPIES reaction is much different than a typical food allergy. There are no hives and the reaction takes place 2-6 hours following consumption of the trigger food. The reaction is intense vomiting, with other side effects being lethargy, pallor (yellow-paleness), dehydration, a rash, and diarrhea in the hours following the reaction. The symptoms of FPIES mimic a typical stomach bug, which is what FPIES is commonly misdiagnosed for. 

Jack's first FPIES reaction happened a few days before he turned 6 months old. At the time, members of my family were battling colds (and then covid), but Jack's symptoms were very mild. He was fever free, and had a little bit of congestion and a drippy nose. I had fed him oatmeal cereal around dinner time, and proceeded with our normal evening routine. We had bath time, and I placed Jack in his crib so I could finish scrubbing his brother. When I came to his room after scrubbing Sammy, I noticed Jack was starting to fall asleep which was very atypical of him. He started vomiting large amounts of breastmilk and appeared to be going in and out of consciousness. He could barely hold his head up. At this point, my husband called 911. 

When the ambulance arrived, they took his puls-ox, and reported that his oxygen was a little low, but nothing terribly alarming. They took his temperature, and I remember the EMT chuckling and saying, "96.4, you definitely don't have a fever." Now I realize that the drop in body temperature was a sign that Jack was going into shock. 

We were transferred to our in-town hospital, and Jack had several more vomiting episodes. He was swabbed for everything, and an IV was administered to get some fluids into his system. I was very worried about how low Jack's body temperature was, and the nurses went to the OB rooms to get him a hat, and we wrapped him into warm blankets. Jack started oxygen as well, and it was found that he tested positive for "rhinoenterovirus" or, the common cold. Everyone was truly confounded by this, as he had been doing fine up until two hours after dinnertime. He had a heel prick done at one point to test his blood sugars, and they found that his blood sugar was astronomically high. At this point, the doctor mentioned perhaps he had diabetes. Looking back, these are all tell-tale signs of an FPIES reaction, but because FPIES is so rare, the doctors couldn't put their fingers on what was going on. 

We were transported to Blank Children's Hospital by ambulance, and I remember being terrified that I couldn't sit in the back with him. Because Dustin was sick with Covid, he was not able to join us. I pumped in the backseat of the ambulance, and texted updates to family members. My mom rode in her vehicle behind us, following closely. We arrived at Blank, and the nurses that had ridden in the back with Jack shared that he was cranky and starving. I was so thankful to hear his cries, as he had been silent and sullen for hours before. 

Jack nursed really well at the hospital, and we got to our room around 2 in the morning. Jack spent most of the night pulling out his oxygen tubes, and setting off alarms with his movement. Even though the worst was behind us, we stayed the remainder of that night, and the following night as well. Through our entire stay, he was treated for his cold symptoms, as we thought that was the reason for our stay. The thing is with FPIES, is that as soon as the allergen is removed from their bodies, symptoms resolve. 

After being discharged, Jack had reactions on December 8th to a rice rusk, January 3rd to oatmeal cereal, and his most recent reaction was on January 25th to a puff. After his reaction on January 3rd, we began questioning if he had an allergy, and after his most recent reaction, his pediatrician referred us to an allergist. 

After about 2 months of waiting, we were seen by our allergist on March 19th. She said that Jack has "textbook" FPIES, and that he will likely outgrow it by the age of 2. Thankfully, his skin allergy test came back negative for other allergens, and we're hoping that his only trigger foods are to oats and rice. We left our appointment feeling much more confident, and thankful that we have a plan in place moving forward. 

We're currently able to manage any reactions at home with Zofran, and constant supervision. If he becomes unresponsive, we are to head immediately to the emergency room so he can receive intravenous hydration and steroids. Because FPIES is so rare, lots of doctors don't know how to treat it. Jack's allergist gave us a letter sharing how to treat FPIES for any future ER visits we may have. 

In the meantime, we are  to start working our way up the "high-risk food ladder," and introduce Jack to wheat, peanut butter, eggs, and milk. It feels great to have a plan, but I worry that he will have reactions as we move forward. 

Already, this has changed our lives drastically. We have to be very careful about what food is brought into the house, and consumed in close proximity to him. If Sammy happens to spill a bowl of Cinnamon Life (his favorite cereal) it will need to get picked up immediately as Jack could easily put it in his mouth, which could trigger a reaction. I'm guessing that as Jackson gets older and eats more table food, dining out will become very tricky for us. I've found that oats and rice are sneaky ingredients, and that they're in a lot of things that you wouldn't anticipate. 

I'm sharing our story in the event that someone else might also be going through this, and that they may not feel so alone. I'm also sharing our story in case I can connect with anyone who has already walked this path, so that they can impart their knowledge on to me. Jack is a brave boy, and I'm hopeful that someday we will hopefully be on the other side of our FPIES journey.