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"St. John's University Cerebral Palsy List" <[log in to unmask]>
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Anthony Arnold <[log in to unmask]>
Date:
Mon, 26 Mar 2001 00:17:34 -0600
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Magi,

I hope that you don't mind that I past your dental letter on to another
LISTSERV that I belong to.  Here's a response from a parent of a child with
Cerebral Palsy that I have just gotten.  I feel that we would be surprised
that the interest and need for better dental care is greater than what we
feel.  For issues like dental care and a number of others that are happening
everywhere not just one place in the US, we should almost begin an on-line
advocacy group.

Thanks,
Anthony

----- Original Message -----
From: Dani Bryant
To: [log in to unmask]
Sent: Sunday, March 25, 2001 11:36 PM
Subject: Re: An Open Letter on dental care


As a parent of a child with athetoid CP and serious dental problems, let me
explain to the dental professionals a couple of other things.

I cannot find EVEN ONE orthodontist in our area that will even look at my
son.  As soon as I tell them the problems, they say there is nothing they
can
do.  As far as regular dentists, there are very few, and they fall into one
of two categories: ones who want to put him under general anestesia for
every
little thing, and those that don't want to put him under, but want to yank
every tooth out when there's a problem.

Do not assume that all patients with CP or other disabilities have to worry
about what Medicaid will pay for.  My son has a large trust fund from which
he can pay for any medical needs.

If you as a dentist would work on an able bodied person and do a certain
proceedure, then you should do the same for a disabled one.  It's a matter
of
human rights.  Disabled people have the right to look as good as possible,
just like everyone else.  Dentists do not have an exemption from ADA!

Also do not assume that all disabled people with problem teeth are due to
poor hygiene.  I brush my son's teeth everyday, and have always done so.  I
have also used floride as prescribed by several dentists we have tried.  In
spite of this, my son's teeth erode.  I feel this is caused by several
factors: he eats slowly and constantly, he is on an anti-drooling
medication,
and several members of his father's family have "soft" teeth, making me
wonder how much of it is heredity.  He also has a perpetually open mouth,
which doesn't help him orthodontically.  While I realize that, I find it
hard
to believe that nothing can be done for his bite, even if it means a
permanent retainer.  We put braces on his legs every day, why not his teeth?

I fear that my son will also have "The Look" all his life.  I am bound and
determined to find someone to help us, if I have to go across the country.
If anyone has any resources for me, I'd greatly appreciate them!

Dani

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