Matthew's Story: Autism, GI Distress - Failed Medicine

      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 inexplicably 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
cantaloupe.  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 thoroughly 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.