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.

Wednesday, July 27, 2011

A Rare Food Allergy Doctors Know Little About

Med Watch: A rare food allergy doctors know little about.

Another FPIES family in the news.   The family's story is something that hits close to home for many FPIES families...."I googled baby vomits rice cereal"- wow, did we all do that?  Because who in the heck is allergic to rice?  FPIES kids are, it's bizarre but very real, and scary.   This mom's account of her daughter's reaction is an emotional account for any FPIES parent, as her daughter is one of the numbers of FPIES that went into full shock with the ingestion of rice.  The statistics show that ~20% of FPIES children do (although I would dispute that number to be much higher based on what is shared in support groups).  The interview is a window into an FPIES families world. 

The news report includes an interview from the family physician who helps manage their daughters care, with emphasis on the need for ruling out other conditions, and the symptoms caused from an FPIES reaction. 

Thank you to Ginny and her mom for a great awareness story on FPIES!

Tuesday, July 19, 2011

Food Protein Induced Enterocolitis Syndrome: Diagnosis and Prognosis for FPIES

I always enjoy finding further updates, as well as medical and personal insights, written on FPIES.   The perspectives of this little known clinical diagnosis are always interesting to read when you have a child with FPIES.  View two well written articles here on Helium: Food Protein Induced EnterocolitisSyndrome: Diagnosis and Prognosis for FPIES.

The first, written by Dr.Nichole Evans is an informative synopsis of the the Up To Date article reviewed and updated in May 2011 on Food protein-induced proctitis/colitis, enteropathy, and enterocolitis of infancy and written by Dr. Alan M Lake, Associate Professor of Pediatrics Johns Hopkins University School of Medicine. 

Dr.Evans outlines the Up To Date article nicely.  "Food protein induced enterocolitis syndrome, also known as FPIES, is the most severe of all food protein-induced gastrointestinal diseases in infants".  She goes on to outline the diagnosis of FPIES, based on recognition of symptoms and by monitoring response to elimination of offending proteins as well as endoscopy to rule out other conditions that may cause similar symptoms in infants.  She concludes that "FPIES is an uncommon allergic disorder diagnosed by clinical features, endoscopic investigation and response to dietary management".   

The next, by Dr. Pandula Siribaddana, provides a summary of the diagnosis and prognosis of FPIES utilizing two comprehensive references:
1). In 2008: "Enterocolitis Syndrome: Consensus Recommendations for Diagnosis and Treatment"  written by the Japanese Research Group for Neonatal, Infantile, Allergic Disorders.   Which I also, personally, have found to be a useful resource of information. 
2). In 2009: Food Protein-Induced Enterocolitis Syndrome (FPIES) - a review from the UK Current Allergy & Clinical Immunology.  Which happens to be one of my personal top resource articles on FPIES. 

Dr. Siribaddana's article starts strong with "If ever there were a disease, which has been extensively under diagnosed and poorly managed, food protein induced enterocolitis syndrome (FPIES) would be right up in the list".  He goes on to highlight the "possibility of serious complications, if not managed properly" and that "it's pathological basis is a svere cell-mediated-hypersensitivity reaction (non-IgE mediated) within the gut mucosa".  His review provides the five-step process for diagnostic criteria set forth by the Japanese Research Group for Neonatal, Infantile, Allergic Disorders; which covers the symptoms, differential diagnosis, appropriate milk, body weight gain, and food challenges.

He concludes with a pivotal message to physicians, "although the paper was a consensus statement, it does not necessarily mean all affected infants and children should be managed in a similar manner.  However, following the guidelines would reduce the chances of missing FPIES, which would bring long-term benefits and improved prognosis for sufferers". 

Sunday, July 17, 2011

FPIES makes National News on Good Morning America!

Parents Limit Child to less than 10 foods is the title of the Good Morning America segment dedicated to raising awareness of FPIES through a family's story.  This family, also has started a research Fund, I have mentioned here before:  FPIES United Family Fund.   

The title is deceiving but eye catching and eye catching is awareness.  We need to continue to raise awareness, that from the outside looking in, despite how it looks from the outside- our children are sick and our families are struggling because of the lack of awareness and treatment plans. 

Take a moment to view the video, if you have not already watched it.   Good Morning America did a good job in covering several of the aspects that FPIES families share.

Saturday, July 9, 2011

"In truth, question everything"....

This blog post on an allergy blog I follow: Grading the Severity of your Allergy: Sensitivity vs. Reaction Level, gives good advice on how to decipher your reaction levels, your severity.  What do you (or your child) react to?   Everything in the air?  Cross contamination?  Trace proteins?  Food families? Through breastmilk?  Through feed from the animal contaminating the meat?  Through formula?  On the skin?

With Non-IgE allergy, just as with an IgE Allergy, even the blood and skin tests will not tell the severity of an allergy; it will only tell the positive antibody production and the probability of reaction.   The only tried and true way to tell a person's reaction level is by testing it with elimination and challenge.  Eliminate the food from the diet, if symptoms subside, there are good chances you are allergic and need to eliminate that food, and all derivatives of it from the diet.  Some reaction symptoms are obvious enough you don't have to, nor would you want to, challenge the food.   A challenge would consist of a re-introduction of the food once suspected symptoms have resolved.  This challenge can also help determine severity of the allergy; as addressed in the above blog article.   Some people react to any and all minute derivatives or cross contamination of the allergen, some can handle derivatives or oils, etc.  The only true way to know is to challenge, and in the meantime- question everything.