June bug’s FPIES… What?! What’s that?!

Imagine standing in the shower with your weak and lethargic baby while she poops and vomits over and over again. All you can do is hug her cheek close to yours and say “hush, hush, hush”…”it’s ok”…”mommy’s here.”

Vivian June, my daughter, has food allergies that cause profuse vomiting and diarrhea exactly 2-4 hours from consumption of her allergens. Epi-pen’s don’t work. Hydration helps…when you can get that in safely.

My sweet chubby baby girl

Have you ever heard of FPIES in your life?! I’m a Registered Dietitian. I went to school for 4 years and studied nutrition at Michigan State University. Before that I studied culinary arts for 2 years. I interned for 1 year in community health, management, long-term care, and clinical dietetics. I had never heard of FPIES. So don’t feel bad if you have never heard of it. I was baffled.

Food Protein-Induced Enterocolitis Syndrome (FPIES) is a type of food allergy affecting the gastrointestinal (GI) tract.  Classic symptoms of FPIES include profound vomiting, diarrhea, and dehydration. These symptoms can lead to severe lethargy, change in body temperature and blood pressure. Unlike typical food allergies, symptoms may not be immediate and do not show up on standard allergy tests. – The FPIES Foundation

Our pediatrician didn’t even know how to respond to my daughter’s symptoms: vomiting anytime I fed her vegetables????

My husband once said, “no one is allergic to ALL vegetables. What is going on?!”

It all started way back

Vivian was born in the fall and started life with hip dysplasia. Poor girl had to wear a harness for the first 3 months of her life. It was winter in Michigan and she was forced to wear dresses. She had to sleep on her back and nurse sitting up. (I know babies are supposed do sleep on their backs all the time, but my babies never liked it.) Then that winter she was diagnosed with bronchiolitis and was hospitalized for a few days after I couldn’t keep her hydrated at home. We were going into the pedatrician’s office almost every day for checkups and I finally said, “Enough! She can’t breath from all this coughing and snot in her nose! We’re going to the ER.” But let’s get back to FPIES. Basically I’m letting you know that this momma was real tired already.

Vivian June around 2-3 months old wearing her hip harness

Vivian was a great “eater”. My son, Charlie, used to fall asleep while he nursed, but she was super efficient. She would eat on one side. Take a break. Burp. Eat on the other side. Get back to napping, sitting, playing. She was such a happy baby. Chubby. Healthy. Then we started baby foods.

Like a good dietitian

Like a good dietitian (and like I did for my son), I started my baby daughter on vegetables instead of fruit. I usually recommend moms start their babies with pureed vegetables instead of fruits so they get used to the bitter flavors first. My son still likes vegetables today. Well Vivi loved the carrots. Awesome! Then she vomited the green beans. Bummer! Then she vomited the spinach. Another huge bummer! And it wasn’t just vomiting. It was really bad. So I gave her a break for a while. She was such a good eater with nursing that I forgot about it for a while.

She loved the carrots

I was going to be gone for a day and I suggested my husband, Jud, try giving her some of the soy formula we had from Charlie’s infancy. It was still within date.

The crazy reactions started

Jud called me rather stressed while I was out. Vivian was vomiting crazy amounts and had diarrhea.

I came home as soon as I could. I held her tired little body while I stood with her in the shower. There was no other way to contain the quantity of vomiting and diarrhea that was coming from this tiny little girl. I just let the water wash it away as I held her close. “hush, hush, hush… it’s ok… mommy’s here.”

When she had nothing left to give, we dressed her in warm blankets and called the ER nurse. At the time my husband and I assumed we must have given her some bad formula and both of us felt terrible. Per recommendations from the nurse we gave her stomach a rest and just let her sleep through the night. No ER visit was necessary. She perked up a little in the morning but was still very tired and pale. After about 48 hours she was more energetic and back to breastfeeding normally again.

We continued to think that was just some bad formula until I got a call from daycare one day. Vivian had vomited up some peas at daycare and it was really bad. Then on her first birthday I decided to treat her to some sweet potatoes (which she LOVED). More vomiting. Lots of vomiting. My sister, having food allergies of her own, shared wise advice: start writing down the dates of all these things that are happening. She was so right. By the time I was able to see some specialists (after much prodding of the pediatrician to do so), I couldn’t keep dates or times straight in my head. My journal was a great help.

The journal also helped me realize that Vivian’s vomiting was always 2-4 hours after consuming some of these vegetables. That’s strange. And vegetables?! Not nuts? Not fish?

The GI specialists

We first met with a gastroenterologist who performed an upper endoscopy with general anesthesia. That’s when they stick a tiny camera down her throat and look around and take small biopsies of tissue. She was diagnosed with EoE (esosinophilic esophogitis), which is a chronic disease of inflammation of the esophagus after exposure to an allergen and buildup of white blood cells that cause stiffening and sometimes hardening of the tissue. This can lead to swallowing difficulties and sometimes GERD or vomiting or heartburn type symptoms.

Ready for our upper endoscopy appointment

Whew! That was difficult news. Anytime you hear the word “chronic” and “disease” in relation to your kid your soul dies inside a little. At least until you come to terms with what your new life and your child’s life is about to fold into.

Now the problem was figuring out what she was allergic to. We met with the dietitian and nurse practitioner who informed me that I had to stop nursing my baby and start giving her a “pre-digested” amino acid formula so we could eliminate all symptoms.

Stop nursing my baby?!

What?! Stop nursing my baby? My breast milk was the only thing that DIDN’T make her vomit as of yet. If you have ever nursed a child, you may have an idea of how hard it would be to be told by someone else you have to stop. I felt like I was personally poisoning my own kid. “Can I just stop eating certain foods?” I asked. Nope. This was the only way.

So slowly I started weaning my 14 month off breast milk and switching her to a bottle and this new formula that smelled like vanilla cake. The first ingredient was corn syrup. For a “natural” momma who usually reaches for supplements before meds, this was not a turn on. But after having preeclampsia with my first baby and a c-section, I’m more accepting of modern medicine than I used to be.

Next we met with the allergist. Dr. Kelbel spent a long time listening to my story that day. He wanted me to monitor her for a while, but he suspected she had what was called FPIES allergies – Food Protein Induced Enterocolitis Syndrome. He wasn’t able to rule out EoE, but he was fairly certain FPIES was her diagnosis. I went straight home to research it. Sure enough… she was textbook FPIES. How had I never heard of this before? And how does a person get this rare disease?!

Vivian close to 2 years

Honestly, we were rather relieved to have some sort of answers after all these specialists. The down side… Vivian missed some important developmental stages of eating from 9 months to 14 months. She’s 3 now and is still seeing a speech therapist. She talks just fine (JUST FINE), but she doesn’t know how to chew properly. We could let this go, but then she may never eat meat, or raw vegetables, or dried fruits, or anything else “too chewy, mommy.” When she was 2 years old I was still pureeing her food with a mini food processor. I would bring it to people’s houses. Whatever we were eating as a family, Vivi would eat in pureed form. I had to start doing that because she got tired of the limited baby food pureed options REAL QUICK. That makes sense. Pureed baby food is for BABIES – not toddlers.

Constipation and magic cereal

Another challenge we faced with her was constipation. She had a terrible time pooping even when she was only breastfed. Perhaps that was because of her allergies we weren’t aware of at the time or maybe she just has unique intestines. Either way, she doesn’t poop every day. I’ve since learned that’s it’s completely normal not to poop every day. Are you aware of this? However, it’s not normal (or desired) to have pain with pooping or difficulty getting it out. When your 1 or 2 year old is struggling and crying to poop, it can break your mommy (or daddy) heart. The doctors suggested various stool softeners, but I didn’t feel comfortable giving her medications that were essentially for adults. I decided to mix food ingredients in her rice cereal (the only food she could eat safely at this point) that I know help the gut work properly – fiber and healthy fats!

My Magic Cereal recipe worked great! Vivi started pooping every day! She still had some pain at times, but she didn’t have trouble getting it out. Once we switched to the ElecareJr amino acid formula prescribed by her GI specialist, her bowels changed quite a bit (green, weird, and mushy), but overall the Magic Cereal was a huge help when we needed it. You can find the recipe in my recipes link.

How’s she doing now?

Charlie & Vivian last summer

You’ll be happy to hear that kids statistically “out grow” FPIES allergies by the age of 5 or 6. Vivian has about a 99% chance of being allergy free some day – provided she doesn’t have EoE. That is definitely a comfort. Thanks to our diligent efforts (and a lot of prayers and emotional support) we have managed to keep a variety of pureed foods in her diet and Vivian has been growing very well and has not declined in her growth chart trends.

Her GI specialist, Ashley Verhey NP, was extremely happy with our progress and her excellent health. Let’s just say I wanted to cry and also feel a little proud of myself finally. I was working so hard to make sure Vivian had multiple food options (even pureed) and a variety macronutrients (carbs, fat, protein). All our hard work was paying off. Vivian June still has work to do with eating therapy, but her brain and her body are doing great. Her mommy and daddy love her so much and we’re so privileged to have excellent doctors to help care for her.

Do you have any experience with FPIES? Are you questioning symptoms your child is showing that might be allergy related or nutrition related? Are you trying to cope with FPIES in your family? It can be difficult. What kind of support do you need? What kind of support have you found that’s helped you through? Comment below.

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