O-Boy(s)!: Zero Gain

Monday, November 7, 2011

Zero Gain

Colin had his 1 yr. well check this week. Developmentally this cute guy is right on track. I am always grateful that there have been no developmental delays due to nutritional deficiencies in either of the 2 FPIES boys. Unfortunately we discovered that in the past 3 months, he has gained no weight at all. As Dr. Havlik pointed out, "Clearly he is a tank, but..." BUT - this means he most likely is having a calorie absorption problem.

With Scotty we were counting calories for years - making sure that each day that enough calories went in his tiny body. Colin's chunky body has been camouflaging this issue. So what do we do? Not sure for now. In the mean time Peter will keep giving him his middle of the night bottles. I won't find another babysitter - we can't risk him boycotting bottles for a new face. But all this OK. Having watched the whole process with Scotty, I have such a different perspective. We can and will, do everything and anything to get thru these next 3 or 4 years. It pays off! A healthy child is the goal.

No comments:

Post a Comment

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