O-Boy(s)!: Wrapped in Love

Saturday, May 15, 2010

Wrapped in Love

This is sick me. I have been in bed for almost 3 months now - and have recently been officially sent to bed. The very sad lack of entries and photos makes me want to CRY! ...but this is why. We are all hopeful that in another couple weeks I will have a miraculous revival of health and can finally be mom again.

Speaking of moms, my dear mother sent me this quilt in the mail. Love in a box and now wrapped around me every day. We have sewed together many times, she has taught me about quilting, she has made them for each of my babies of course....but this was the first one she has made for ME! I love it more than she will know. It has caught buckets of tears already as I wonder how I can have the strength to bear this current challenge for me and my family. I wish so much that she could come and help, but I know she can't (only ONE MORE MONTH until she is finished in Philadelphia). My quilt is a good substitute for a hug right now.

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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