O-Boy(s)!: Sick Scotty

Saturday, December 24, 2011

Sick Scotty

We are 10 days post tonsil and adenoid removal for Scotty. This should be when he starts to feel healed. He is still very sick! A couple of nights ago we rushed him to the Children's Hospital Emergency Room as he woke up with blood pouring from his mouth - straight out of a horror film. It was very scary. He will be fine. But Peter and I are reminded that his little body is fragile. All the years battling FPIES have taken its toll. His extreme illness has certainly changed these holiday weeks for our family. Everyone in our family wants him well.

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What is FPIES?

I have 2 children that are recently healed from FPIES - Food Protein Induced Enterocolitis Syndrome. Scotty is 5 years old - and fought this disorder for about 3.5 hard years. Colin is a 20 month old baby - and had a quick recovery. He is recently cleared of all of his symptoms, calling him FPIES free!

FPIES is a severe delayed food allergy of the gut, it is understood to be a T-cell mediated response in which food is considered a foreign invader and the body “fights” 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 can lead to: lethargy, low body temp or fever, hypotension, and in severe cases, sepsis and shock. Reactions to food are often delayed - a couple hours or even days.

Many children also experience a combination of discomforting symptoms while the body "fights" this reaction and these can include: extreme stomach pains, gas, runny stools with or without mucous or blood, persistent hiccups, acid reflux, rashes, sleep disturbance, and agitation. Other atypical symptoms I see in my own children are persistent runny noses and ear infections. Sypmtoms can last a couple hours or even weeks after the initial ingestion of a trigger food.

FPIES is a clinical diagnosis (based on symptoms), there is currently no test for it.

FPIES common trigger foods as listed in the literature include, but are certainly not limited to: Dairy, Soy, Rice, Oats, Barley, Green Beans, Sweet Potatoes, Squash, Chicken, Turkey, Corn, Eggs.

Safe foods for these children to eat are determined by food challenges either at home or the doctor's office, as directed by the child's physician.

Children diagnosed with FPIES are treated in part with a strict elimination diet - keeping all trigger foods 100% out of their bodies. It is hoped that this will give their gut time to "heal".

Read and learn more in Joy's collection of articles:
FPIES File Cabinet

Also see her great collection of articles at The FPIES Foundation:
Medical Resource Articles

Check out this new great website with tons of FPIES info:
International Association for Food Protein Enterocolitis