O-Boy(s)!: Lego Mania

Monday, July 11, 2011

Lego Mania

We have 2 Lego maniacs in this house. Michael builds complicated Lego kits, as well as invents his own vehicle creations. Jacob builds Bionicles - Lego alien/robot guys, which he then plays with for hours. Peter's parents took us all to Legoland in San Diego over the weekend, fulfilling a dream for these boys. Traveling with Scotty always makes me nervous. Feeding him is tricky from a hotel. Greg and Candace rented a fabulous suite for us at the La Costa Resort with a large kitchen. It was amazing! I was able to cook food for Scotty the whole weekend. Amazing.

We marveled at Miniland USA - detailed replicas of US cities. Rode the dragon roller-coaster. Flew in Lego airplanes. Spotted amazing Lego creations everywhere we looked. Drove Lego cars on the mini streets. Built Bionicles in the Hero Factory workshop. Shopped in the Lego Big Store. And most importantly....won giant stuffed husky dogs by shooting a basketball. Michael and Jacob each swooshed one shot into oval shaped hoops (looking normal from where we stood) winning dogs as big as Scotty. Wahoo!

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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