WESTON'S PERSONAL STORY

July 31, 2016 Lower GI Disorders, Pediatric FGIMDs

My five year old son Weston has struggled with gastrointestinal symptoms since he was born in 2010. These symptoms began as vomiting, diarrhea, failure to thrive, malabsorption syndrome, and acid reflux. The doctors first suggested that we eliminate certain foods in my diet because I was strictly breastfeeding. There were very few symptom changes with my food eliminations. The doctors then suggested we supplement his diet by adding formula. We tried multiple formulas with little to no success as my sons symptoms all still continued even with the multiple formula changes. The doctors then suggested I quit breastfeeding all together and try a medically made formula called Neocate. Neocate is an amino acid based formula which makes it easier for infants to digest and process through their digestive system. The Neocate worked somewhat, my little one, at five weeks of age finally started gaining weight and was no longer failure to thrive. Some of the other symptoms diminished slightly but then he was struggling with constipation in addition to the other symptoms that were still present. My son was put on Miralax at about 10 months. The Miralax was helpful to some degree but after years of taking the medication it eventually stopped working. He was also given medicines early on for acid reflux but those medications did not seem to help at all so we discontinued using them. Over the last five years my son has been under the care of multiple different gastroenterologists at multiple different hospitals none of which really knew anything about Functional Gastrointestinal and Motility Disorders. In September of 2014 we finally got Weston's first of many tummy xrays. After that he was hospitalized multiple times for clean outs and dysimpactions and has had multiple tests and procedures. My son has been a patient at the Colorectal Clinic at C.S. Mott Children’s Hospital at University of Michigan for over a year. He has been diagnosed with multiple different things such as; chronic constipation, encopresis, slow colonic transit, colonic dysmotility, functional bowel disorder, and so on. We had never even heard of a Functional Gastrointestinal Disorder let alone a motility disorder before my son was a patient at C.S. Mott. He is currently taking daily six medications (5) oral and (1) rectal to keep him having bowel movements and to keep him from becoming impacted with stool. We have tried multiple alternative therapies for symptom relief for him such as; physical therapy, biofeedback therapy, muscle stimulation, even the Sacral Nerve Stimulator Implant, Aromatherapy, and more.


To help raise awareness we have created a Facebook group called Weston's World: https://www.facebook.com/groups/545456308959231/. Unfortunately, my son has outpaced the doctors at C.S. Mott Children’s Hospital and there is no further testing that can be done there. His doctors now feel it is time to refer him to another specialist. At least this time we will be going to a doctor whose primary focus is FGIMDs. His doctors at C.S. Mott Children’s Hospital are currently in the process of referring him to the Pediatric Motility Center at Nationwide Children’s Hospital in Columbus, Ohio. Which we have heard amazing things about!


Click here for an update on Weston.

To leave a comment you must login first, click here to login