Finding a FPIES Diagnosis?

All moms can agree on one thing, we fear anything dangerous happening to our children. We try to protect our children and save them from any harm. I thought I had failed my newborn, 16 pound baby when he began to profusely vomit all his daily intake. He vomited nearly eleven times in an hour, immediately turned pale while, cold, catatonic and was barely responsive. I feared he would go into shock if we did not rush him to an Emergency Room or Urgent Care soon. As a first time mom, I had no idea why he was vomiting, how to stop the vomiting and if this was common in all newborns.

I held back tears trying to stay calm, as we flew in our car to the Pediatric Urgent Care near my home. My son became more lethargic by the minute until he fell asleep. He was exhausted from all the vomiting. I was terrified that he would not wake up.

Thankfully, we made it to the Urgent Care and the doctor explained he had simply caught a stomach virus. They gave our son an anti-nausea medicine to stop the vomiting. After three more episodes of vomiting, the medicine took effect. The doctor said it was common for babies to catch a stomach virus since they do place many things in their mouths. He asked everyone to wash their hands more often at home. Then, sent us on our way with Gatorade for our son.

More of the Same

Not being aware that this may happen again, my husband and I kept trying to introduce our son to typical new foods. A week later, our babysitter was home with our son while my husband and I were at work. Once again our baby boy experienced the frightening symptoms. I had to call all my clients apologetically and rushed home to see my son. When I arrived, I asked our sitter what she last fed our son and she said, his sweet potato. That was intriguing, since the last time we rushed him to Urgent Care our son had also ingested sweet potato as his last meal. Our son was having an unusual allergy to sweet potato.

We took our son to our pediatrician and they asked we avoid sweet potato. Since then we have and we continue to do so. We tried to feed him chicken and he had the same reaction. Once again we rushed him to the Urgent Care. It is very stressful to think that this allergy can happen with any new food he has not tried or even foods he has had before. Our pediatrician referred us to an allergy specialist. The specialist ignored my husband when he told him what our son was experiencing with sweet potato and chicken. He had no empathy for our situation and thought we were just overly concerned parents. 

Searching for Answers: FPIES

I am still looking for answers. I have done my own, non medical degree related research and have found that my son may have Food Protein Induced Enterocolitis Syndrome or FPIES for short. So what is FPIES and does your child have it too? It is a RARE condition, that causes a hypersensitive reaction to a specific food (or foods) that affect the gastrointestinal tract. As a child with FPIES digests their food, they will reject random proteins like a poison. It is a fairly new diagnosis and few doctors know about the condition. The closest FPIES specialist to us is in Atlanta. We suspect our son has FPIES but we really do not know and that scares me.

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3 Responses to Finding a FPIES Diagnosis?

  1. Jess Dp November 3, 2017 at 8:18 am #

    Has anything come from this? Did you see the specialist ? We don’t have the vomiting like this, but my son has an issue as well. The Doc treats me like I’m making it up. 🙁 I’m so frustrated. Something is wrong w my baby, but she blows me off Bcuz he isn’t like all the other cases.

    • Stephanie Moir
      Stephanie Moir November 3, 2017 at 11:08 am #

      I am sorry to hear that, I know how frustrated you are! We are going to see another allergy specialist and a GI, hopefully one of them can confirm if he has FPIES.

      • Jesse December 1, 2017 at 12:32 pm #

        It’s tough to get an FPIES diagnosis, our daughter who is three now was diagnosed at 1 year old. After an emergency room visit and three specialists in the Northeast. Our allergist was the one who diagnosed her. Our allergist did the panel testing for food and environmental allergens and found that she was highly allergic to egg and dairy. She is also allergic to cold. Therefore we sold everything in NH and here we are in Florida. I am trying to find a specialist in the area as well. We are happy with the support we receive from our allergist and gastroenterologist. Our daughter will be 4 next month and should be growing out of this soon and is not showing any signs of the FPIES or allergies going away. If anyone can suggest a local doctor, we would appreciate the info.

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