FPIES is currently a clinical diagnosis based on symptoms. There is currently no test for it. The diagnosis has come a long way since this mother created this video: FPIES: Not your typical food allergy. A video created by a mom desperate for help and answers to her sons violent reactions. It is the graphic video of her son having a reaction.
Awareness has grown since this video was made, in large parts likely due to her putting the video on YouTube for others to learn and share. I know it was educational for me and my family with our son's reactions because nothing could have captured it better than if we had recorded one ourselves. Thankfully a challenge such as this, that would have been the diagnostic criteria a few years ago, is not needed with the increase in awareness and better understanding of this Non-IgE Allergy. With an experienced MD, a history of symptoms and reactions is often sufficient for this clinical diagnosis. Removal of the offending protein(s) with resolution of symptoms also confirms the diagnosis. It is hopeful that, wth further research, there may one day be diagnostic tools available for this type of food allergy.
I was inspired by the knowledge gained from this mom's experience, I wanted to share our own FPIES story- in hopes that it too, could help another family along this road. Where the above video captures an FPIES to shock reaction, our video highlights pictures of our son's first 2 years. It outlines our struggles in our son's "atypical" FPIES responses. It can be viewed here.
What is FPIES?
FPIES is a severe delayed food allergy of the gut, it is understood to be a T-cell mediated response, a Non-IgE Food Allergy in which food is considered a foreign invader and the body fights, or attacks it, until it can violently expel it; although the exact mechanisms are still not well understood.
Symptoms include: profound vomiting (often to bile), diarrhea and/or constipation. These symptoms can quickly lead to: lethargy, low body temperature, low blood pressure and in severe cases, sepsis-like shock. And still yet, many parents report children also experiencing many discomforting symptoms while the body fights this reaction and these can include: extreme stomach pains, excessive gas, runny stools with or without mucus/blood, acid reflux, rashes/eczema, sleep disturbance, and agitation/inconsolable crying.
FPIES is a clinical diagnosis (based on symptoms and history) there is currently no test for it.
This is my definition of FPIES, defined by my own research in: medical journal articles, other families living through FPIES I 'meet' on the support groups and, of course, my own son. You can learn more about my research in FPIES here on this blog, and at The FPIES Foundation website.