Better Together: Connecting Families and Doctors to Understand FPIES
By Cara Salazar
“I think it’s FPIES.”
When the allergy doctor uttered those words, it was the first time my husband and I ever heard the phrase “FPIES.” Our 22-month-old son was seeing an allergist for symptoms ranging from vomiting to fatigue. As parents, we were relieved and confused at hearing an actual acronym identifying what we had witnessed in our otherwise vibrant child.
We were sent on our way clinging to a stack of printed materials followed with a “he will probably outgrow it by age three” and a pat on the back. As many parents do, we turned to the internet to see what we could find. The information was scant and contradicting to our situation. For example, our son tested negative to food allergies, was not anemic, was exclusively breastfed, and he nor our daughter was a caesarean delivery. According to the scholarly medical journal articles that I read, these circumstances would have put him in the “rarely occurring” category. Yet, here we were.
Although our son didn’t fit the typical FPIES patient, his profile did align with the ever-present call for more research to be conducted. According to a 2017 article published in Allergology and Immunopathology, “the prevalence of FPIES is still unknown” (p. 209). In addition, parents typically want a confirmed diagnosis when faced with a new illness. Through my own research, I found that clinicians had limited information to make a formal diagnosis, aside from costly food challenges. This was confirmed by Current Allergy and Asthma Reports in 2018 when they addressed that there is “an overall lack of familiarity with the illness, in conjunction with symptoms that often mimic other diseases such as viral gastroenteritis, anaphylaxis, or sepsis” and that this “frequently leads to delayed diagnoses or misdiagnoses” (p. 2).
This gap between patients and clinicians was evident upon my son’s diagnosis, but was becoming more clear the more we learned about FPIES. Fortunately, the FPIES Foundation created the FPIES Global Patient Registry (fpiesregistry.com). This registry, the first of its kind globally, is a place where doctors, researchers and families can connect to better understand FPIES. It helps develop a strong foundation of data, potentially impacting existing and future patients, and brings the FPIES community together. Registered families can participate in research and informational surveys, knowing that through their participation they are providing valuable information for doctors to research and understand this rare condition.
Families can start a profile, find out about research studies and clinical trials, and all patient information is kept confidential.
Together, we can make our collective voice heard!
Cara Salazar has a son with FPIES and a daughter with a peanut allergy. She is a professor at Washington State University and researches the health needs of underserved populations. You can follow her at carasalazar.com.
Cherian, S. and Varshney, P. (2018). Food Protein-Induced Enterocolitis Syndrome (FPIES):
Review of recent guidelines. Current Allergy and Asthma Reports, 1-5.
Sanchez-Salguero, C.A. (2017). FPIES: The dark side of food allergy. Allergology and
Immunopathology, 45 (3), 209-211.