An Adventure in FPIES

It all started one dark and stormy winter night. Just kidding, it was a gorgeous morning, the birds were chirping, and I had an almost two year old and a 5 1/2 month old happily cooing back and forth at one another. As a two-time so called “experienced” mama, and a pediatric occupational therapist, I felt confident enough to introduce solids into my little one's diet. What I didn’t know was that there would be a slightly turbulent road ahead.

So that day, I mixed some lovingly pumped breastmilk with some Earth’s Best baby oatmeal (it’s $3, organic and hypo-allergenic...total mom win), and gave my sweet Emma girl a couple spoonfuls. She was totally digging it, so I gave her a spoonful more. And then maybe another spoonful after that. Can’t argue with a happy, hungry baby!

Emma about an hour before a reaction

Exactly two hours later, Emma was a wreck. She vomited every five minutes for the next two hours, and was quite lethargic. I had a hard time arousing her, but figured that vomiting was pretty exhausting, especially for a 5 1/2 month old. Now, if I know anything about moms, it’s that we always blame ourselves. Certainly there was something wrong with the breastmilk I had mixed or that I possibly just overfed her since she was loving it so much.  I felt awful, and was so embarrassed, but the doctors office said not to worry, just to wait a week or two and try again.

Fast forward to two weeks later, we tried again. This time, I told myself I would be super smart and only give her a teaspoon since I surely overfed her last time. Exactly 2 hours later, she had an even worse reaction. Every five minutes she vomited like clockwork for the following three hours. As a mom of two small children, I have seen my fair share of nasty stomach bugs, but I had never seen vomiting quite like this. Have you guys ever seen that scene from the Exorcist where green vomit sprays 10 feet across the room? That was my tiny baby. When Emma ran out of things to throw up, it started coming out like slimy yellow and green bile. She was so lethargic that she wasn’t even blinking, not even flinching each time she’d throw up...it would just pour out of her mouth.  At that point, I did what any respectable Millenial Momma would do...I called my mom. Together we called my pediatrician, and they told me to go to the ER. On our way, Emma stopped responding to me. I was pinching her feet, calling her name, moving her around, doing anything I could think of to keep her awake. I could have dropped her on the ground, and she would not have reacted.

You guys, this sounds like a scary story, but I have to tell you I was calm as a cucumber. That is, until I met the ER doctor. Ladies, I want you to close your eyes and take yourselves back to the guy at the bar in college. The super hairy, kind of creepy, extra narcissistic guy that somehow showed up drunk everywhere you went. That was our ER doctor. I spent $1500 for him to tell me that she had a stomach bug. Yes, a stomach bug coincidentally 2 weeks apart at exactly two hours after eating oats. Love that guy.

If I’ve learned anything working in the medical field, I have learned that doctors are human. Some doctors are better than others, and everyone has a different opinion on everything. Luckily, I have two great pediatricians who have been ultra supportive. The ER doc told me I could continue to introduce all foods slowly, and unfortunately Emma had the same reaction later to rice cereal. 

About FPIES

One lengthy Google search for me, and another Google search for my super experienced pediatrician, and he came up with a diagnosis of FPIES...food protein-induced enterocolitis syndrome. And yes, it’s as fun as it sounds. Basically it’s a rare food allergy that has a characteristically delayed reaction because the allergy doesn’t occur until the food is processed in the gastrointestinal tract. The main symptoms include profuse vomiting, sometimes diarrhea, extreme lethargy, pale or blue skin, and eventually can lead to a sepsis-like shock. Unfortunately, there are no tests that consistently signal an FPIES diagnosis, and it is often considered a diagnosis of exclusion. In our case, blood tests were performed to rule out traditional allergies.  Because it is not a traditional allergy, it does not respond to an EpiPen and sometimes requires a hospital trip. In an emergency situation, fluids are given to help stabilize blood pressure and improve dehydration. The good news is that FPIES usually resolves with time, at around 3-4 years old. Medically supervised oral challenges with trigger foods are given to children once they are suspected of outgrowing the diagnosis.

Daily Life

Right now, my baby girl is on a grain free diet—meaning no rice, oats, wheat, quinoa, or barley. Who knew babies could live without Cheerios? I find myself reading labels constantly at the grocery store, and I admit that pre-FPIES I thought “gluten-free” meant grain free...nope! Most gluten-free foods are made with rice flour...who knew? Luckily, Emma is only 10 months old now and does not seem to notice big brother’s waffles or Pirate’s Booty versus her green beans and chicken, but someday soon we will all have to transition to grain-free. Guess we will have to hop on board the paleo bus after all!

Disclaimer: We are not licensed professionals. The content in this post is someone's personal experience and not intended as medical advice. If you think your child has a medical issue, please contact professionals.