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Published: Oct. 12, 2005
By DAN OLMSTED
UPI Senior Health Editor
This column receives a welcome avalanche of correspondence, but our recent
discussion of autism as a "whole-body illness" has generated more e-mail and
faster than any other topic we've considered.
The mail comes
mostly in three varieties -- parents telling their own tales of battling
multiple illnesses and disorders in their autistic children; describing what
they believe to be significant improvement through biomedical approaches; and
venting anger at pediatricians for failing to see the disorder the way they do.
Matt Mester of Morganville, N.J., neatly summed up those aspects: "My child is
toxic and needs to be detoxified." Here is his letter.
As a father of a 5 1/2-year-old boy diagnosed with autism at age 2, I have
followed your series very closely.
My son also exhibits a series of biomedical problems that are completely out of
the ordinary compared to my other 2 children (both neuro-typical), not to
mention my wife and myself. Jack is virtually non-verbal and would be classified
as severe, although thankfully Jack is not self-destructive and he is a happy
boy.
He cannot tolerate dairy or soy, has had chronic constipation since infancy, and
has terrible seasonal allergies. Like too many other children, Jack has
regressive autism, which became apparent at approximately 18 months of age when
he lost his language as well as his interest in the world.
Thankfully, the medical science field has progressed since he was first
diagnosed 3 years ago, and we are seeing our first bit of significant
improvement in Jack since we started Methyl B-12 shots and glutathione
treatments this past summer.
In addition, a very recent blood test has revealed an underlying metabolic
problem that will apparently need to be addressed -- we are still awaiting
detailed results of a series of tests to lead us in the right medical direction.
I'd like to specifically comment on a statement published in your most recent
article, quoting a parent: "Autism is a disease that affects the immune, GI and
central nervous system." I honestly disagree with this opinion and offer the
opposite conclusion.
In my humble opinion, there is no such thing as autism. Autism is a series of
symptoms caused by one of a number of underlying medical issues -- most highly
related to metabolic or detoxification problems. These problems are more than
likely genetic, yet triggered by an environmental cause.
I believe that each child needs to be individually diagnosed and tested, as
autism is a very personal disease, therefore studying and revealing as many
possible treatment paths is the right thing to do. There is no cure-all, rather
there are a number of paths that must be followed until you find the right one.
And unfortunately, all of the paths have yet to be identified.
While I'm not certain that thimerosal (a mercury-based vaccine preservative) or
mercury caused my son's symptoms to appear, I'm becoming more and more certain
that my child is, for lack of a better word, toxic, and needs to be detoxified.
His improvement with B-12 and glutathione is proving it to me once and for all.
Here is another representative letter, from Mr. and Mrs. Lawrence Haite of
Kingston, Mass.
We are certain there are medical issues at the forefront of our ten-year-old
son's autism. Sadly, they were missed by mainstream doctors for most of his
early years. When we received his diagnosis there were no blood tests,
screenings or medical work-ups. Most simply advised therapeutic services which
in turn had to be obtained through adversarial means with our school district.
As we watched our son physically decline and had our concerns dismissed time and
time again, my husband and I often thought of just driving to the emergency room
of a major hospital in Boston and refusing to leave until we had answers.
Instead in 2001, I wrote the exact same letter to my son's physician, his
neurologist and a doctor whom I had never met, but heard was having success
treating children on the spectrum. The letter outlined all our concerns
regarding ear infections, frequent antibiotic use, a multiple-vaccination
schedule, suspected food intolerances, eczema-type skin rashes, pale skin
coloring, the inability to tan or burn, imbalance of bowel ecology, poor protein
digestion, chronic diarrhea followed by episodes of constipation, and
malabsorption issues.
Further, our son presented with no protective antibody to Hepatitis B and
elevated titers to measles. He also had nutritional and metabolic deficiencies
as well as elevated HHV-6 and heavy metal toxicity. We did not receive any
response from the aforementioned pediatrician and neurologist.
Thankfully, the physician we never met, Dr. Jacquelyn McCandless, responded to
our request. She reviewed his entire medical history from birth and validated
most if not all of our concerns. She recommended further testing and proposed
treatment protocols that was the first real medical attention our son ever
received. Improvements followed and we continue to address these issues today.
We parents have every reason to be angry with the AAP (American Academy of
Pediatrics), but frankly we don't have time for that, because of the intense
commitment to help our son. It is a double tragedy ... not only in what we
believe to be the root cause of our son's autism (thimerosal/vaccine additive
connection) but the way we were treated along the way.
Initially, we completely stepped up to our parental roles and did not wallow in
"How did this happen?" but rather "How do we help?" The AAP did not. Ironically,
it was only until we did the work to understand "how this happened" that we
could truly help our son.
We struggle daily to work with and celebrate gains made ... but perhaps our
son's treatment and outcome potential would be far less challenging had our
concerns not been dismissed early on.
Last, here is a letter that suggests why a sense of urgency and openness is so
desperately needed in dealing with a disorder that the CDC says afflicts 1 in
166 American kids. We withheld the name.
My son is 7 years old and I'm concerned about his future as an autistic adult. A
little at a time I'm beginning to realize that his autistic behaviors are not
changing that much, and that as he grows, he's becoming a larger body with the
same behaviors.
I saw (ABC TV's) "Nightline" the other night and, for the first time, saw an
autistic adult. There is no information out there on the subjects of teen years
and adult years, and what to expect for elderly years for autistic children. I
cannot bear the thought of my son in a mental institution just to have a place
to live when he grows old.
For now, we've started a trust fund for him so that maybe when he becomes old
enough, he'll have money to have someone take care of him when we're gone. Is
this the right thing to do? What else do I need to do?
Readers who have a constructive response to this father are invited to offer it
via this column. E-mail: dolmsted@upi.com
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