On Sunday November 29th my husband and I boarded an American Airlines flight for London with our son, Matthew, age 5 who is classified as "autistic" by psychologists and psychiatrists. Our son developed normally meeting all major milestones but inexpicably regressed beginning at the age of 15 months following his MMR vaccination. He has also had chronic diarrhea since 15 months.
We have taken Matthew to University of Chicago, (January of 1998) and Rush-Presbyterian-St. Luke's Medical Center, (December of 1998) to two different pediatric gastroenterologists. Matthew's stools have ranged from yellowish-greenish to black and from runny to pasty. He also has not slept on a regular basis for almost three years. This period of time has been draining both physically and emotionally for our entire family.
After our last frustrating visit with a pediatric gastroenterologist at Rush-Presbyterian-St. Luke's Medical Center, we concluded that resolving Matthew's problem with chronic diarrhea would be up to us. This long journey culminated in the most important week of Matthew's young life at the Royal Free Hospital in London.
Upon entering the Royal Free Hospital Matthew was examined by a team of gastroenterologists lead by Dr. Simon Murch. Simon Murch told us immediately upon a physical examination of Matthew that he believed that Matthew was "impacted" or constipated. We told him that could not be possible, that our son had chronic diarrhea. However, upon performing an x-ray, a simple diagnostic test, we saw that Matthew was indeed "impacted" so much so that his colon contained a fecal mass the size of a small cantalope. What appeared to be diarrhea, was in fact overflow from his persistent constipation. It took two days of laxatives and thirty diapers of stool to clean Matthew's colon out.
On Wednesday, December 1st, Matthew had general anesthesia and underwent an endoscopy and colonoscopy. It took approximately one hour. Pursuant to this procedure we now know the following important facts regarding Matthew's medical condition:
1. Matthew's esophagus is inflamed;
2. There are visible changes throughout Matthew's colon indicating inflammation, such as loss of vascular pattern;
3. Matthew's terminal ileum and lymph tissue are swollen;
4. The histopathology from Matthew's biopsies show chronic active pan proctocolitis including cryptitis throughout the colon biopsies and crypt abscesses in several biopsies- an indication of an ongoing, possible autoimmune, inflammatory bowel disease.
(It should be noted that Matthew had just completed a fifteen week trial of prendisone one month prior to our trip to London; this may have in fact mitigated the severity of the visual observations from these procedures).
Armed with this knowledge, we are now able to truly treat our son. He now takes an anti-inflammatory drug to calm the inflammation in his colon. He also takes laxatives daily to ensure that the accumulation of this fecal mass does not happen again. He has finally started sleeping on a regular basis and no longer lies on the sofa rubbing his stomach or screams and has ceased to "toe walk". Prior to this medical diagnosis we had been told by psychiatrists that this was "self stimulating" behavior; sadly we now know that it was a response to PAIN- the only problem was that Matthew could not speak to tell us the real pain he was living in every day and every night.
Each one of our children deserves better medical care than this. An adult or "normal" child would have been examined more throughly to determine the physical cause of chronic diarrhea immediately. The pathetic fact is that the standard of care in America for a child with "autism" is NO CARE other than a diagnosis by a psychiatrist after "behavioral" observations and a prescription for psychotropic drugs.
It is ironic and pathetic that we live in Chicago, a city with several major teaching hospitals which are touted as "centers of excellence" for medical care, yet we were forced to go to England the home of socialized medicine to find physicians who actually listened to our description of Matthew's symptoms and took action to find out what was really wrong with him PHYSICALLY. To our knowledge there is no one else performing these diagnostic tests in the United States on children with "autism". We are forever grateful to Dr. Andy Wakefield for his willingness to listen and treat our child no different than any other child and the courage to provide the care he so desperately needed. We are also grateful to Dr. Simon Murch for agreeing to become Matthew's physician and performing these procedures with expert skill and compassion.
We hope that by posting this message that more parents will become empowered to start demanding appropriate medical care for their "autistic" child. We also pray that if any parent suspects that their child may fit this pattern of gastro-intestinal distress that our story will give those parents the courage to seek out and demand that their physicians practice good medicine which begins by listening to the patient and his or her parents.
Liz Birt and Maurice Lopez
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