Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 14, diagnosed with Prader-Willi Syndrome and Weston 17, diagnosed with Autism/Asperger's/ADHD. It's the ups, the downs, the joys, the sorrows and most importantly, the beauty of living a life less perfect, a life more meaningful.

Wednesday, June 12, 2013

The Brain, the Gut, and another Diagnosis

As a special needs parent, I have become an expert at yet another unusual bodily function....excrement.

I guess you could say, I am a mother who is truly full of shit.

Both of my children suffer from issues related to the gut. Nicholas, with his low muscle tone, suffers from constant constipation. Weston, on the other hand, has a very sensitive digestive system and lately has experienced chronic diarrhea.

Well versed in the long list of Children's Hospital specialists, I scheduled an appointment this week with our GI specialist, Dr Laurie Fishman. She has known Nicholas since he was first born and performed his delicate g-tube operation when he was just four weeks old. But she has never evaluated Weston.

Lately, Weston's bowel movements have been more frequent and he has begun to lose weight.

She performed a thorough evaluation of Weston and took many blood samples.

"Well, what do you think?" I asked her.

"It is too soon to tell and I will need to evaluate his labs first," she explained.

"I know," I said "Pardon the pun, but what's your gut tell you?"

"I am thinking Weston may have Celiac Disease or Irritable Bowel Syndrome (IBS), but again we will need to wait and see what the labs tell us."

She explained how some children diagnosed with ADHD can have very sensitive intestinal function. They feel the need to empty their bowels immediately, this constant evacuation does not allow the fecal material to sit and accumulate, so it can create a "formed" movement. So, the frequent movements cause chronic diarrhea. Prolonged periods of this can inflame the intestines and cause all kinds of malabsorption problems.

Celiac Disease can also be a common diagnosis for some children diagnosed with ADHD/Autism, . It is an autoimmune disease of the small intestine that causes an intolerance in the body to process wheat proteins. There is no known cure and it requires the individual to employ a gluten-free diet for life.

Dr. Fishman and I discussed the interesting brain gut connections that are being explored in the medical field today. She explained how researchers are learning more every day about these important and connected processes. Both of my children suffer from disease related to the brain and both of my children experience different but similarly debilitating issues related to the gut.

We are a textbook family for this latest cutting edge investigation of the brain gut connection.

"Well, I said, to Dr Fishman, "What's one more life changing diagnosis to this family?"

Poor Weston has had very tough week.