I recently read this article: A Case of Severe Atypical Food Protein Induced Enterocolitis Syndrome (abstract here).
It is a short article published in Allergy journal in August 2010 about a case of a severe reaction to cow's milk in a 4yr.old boy. "The article highlights the potential severity of this condition and its capacity to present beyond infancy".
This 4yr.old boy, with a history of developmental delays had been receiving his extensively hydrolyzed cows milk formula via tube feedings since infancy. He had ongoing eczema and a history of GERD; but otherwise had no other indications of allergy past infancy. He was given unhydrolyzed cows milk formula in an overnight feed, within 2hours he was showing discomfort and began to have frequent watery stools (every 10-15min), which progressed to bloody stools within 2hrs.,so the feedings were stopped, and he was also having significant shortness of breath so was taken to the ER.
The article goes on to describe how he presented in the ER without fever (actually had low body temp), had low blood pressure and also acidotic and significant shortness of breath. Further labs also revealed increased methaemoglobin, neutrophils and platelet levels. He was treated for his symptoms of presumed septicemia and remained in the hospital; although extensive work up could not find a source for his symptoms. Follow up endoscopy was performed 3 weeks following this episode and biopsy findings revealed gastritis and eosinophlic infiltrate in the colon. He was resumed on his tube feedings with an elemental formula.
The conclusion of the article highlights that FPIES is a "complex of vomiting, diarrhea, and systemic inflammatory response because of Non-IgE food allergy". The authors note that this case is outside of the published criteria for typical FPIES but that it illustrates the severity of this type of allergy and that it is possible to have an FPIES response beyond infancy. The authors conclude the article with a very important message about FPIES, "FPIES is frequently misdiagnosed, and children often have several acute presentations before the diagnosis is established. In view of its potentially fatal clinical course and the recent increase in prevalence suggested by others, it is critical to consider the diagnosis in young children presenting with acute onset of gastrointestinal symptoms or shock".
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.