At First, We Were Told It Was Colic

Our baby wouldn’t sleep.  He kept screaming every time we put him on his back.  He screamed when we just held him.  WE GOT NO SLEEP.

In each visit with the pediatrician we were told babies just cry.  After a few visits we were told it is probably colic.  On another visit in the 6th week of our baby’s life he performed for the doctor, shooting a violent stream of diarrhea across the room, hitting the window.  ”Wow!” said the pediatrician, “he may have some bad food allergies and let’s get some blood work.”

We had suspected food problems, but sleep deprived we were not able to think it through.  As new parents, and, again, angrily sleep deprived, we just put our trust into medicine and tried to accept that we just didn’t know any better.  But, it turned out our suspicion was right.  Read our FPIES baby story for more about our experience and how we identified the allergy foods.

89% Misdiagnosis

Getting the colic diagnosis for FPIES (click here for info about FPIES) is a common misdiagnosis.  In fact, a 16-year study by the American Association of Pediatrics (AAP) concluded that “misdiagnosis and delays in diagnosis for children with food protein-induced enterocolitis syndrome were common, leading many children to undergo unnecessary, often painful investigations.”  That study showed “only 11% of children who presented to the hospital with their first reaction received correct diagnoses.  Of patients with FPIES episodes presenting to a hospital,

34% underwent some form of abdominal imaging,

28% underwent a septic evaluation,

22% had a surgical consultation, and

6% had a barium or air enema performed.”

Further, the study noted there were 2 reports of children with FPIES being mistakenly diagnosed as having intussusception, which led to nondiagnostic laparotomies - an incision through the abdominal wall.

Final Conclusions of the Study

“Despite increasing numbers of children presenting to our hospital with FPIES, misdiagnoses and delays in diagnosis were common. Early diagnosis would ensure that appropriate dietary advice is given to families, thereby reducing the risk of repeated reactions, inappropriate investigations, and prolonged hospitalizations. Clinicians should be aware that foods that may be perceived as hypoallergenic, such as rice, are common triggers of non–IgE-mediated FPIES.”

This is why I blog about our FPIES experience and list FPIES recipes and eating suggestions.  I hope this site helps your baby feel comfortable and helps you get your sleep back.

Clinical Symptoms of FPIES

In order of most commonly observed, per the AAP study mentioned above:

1. Vomiting
2. Lethargy
3. Pallor
4. Diarrhea

Other studies show additional symptoms, so I’ll write that up in another article.