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Date: Mon, 27 Sep 1999 09:53:25 EDT
From: [log in to unmask]
To: [log in to unmask]

Hi,

My name is Vera.  I have an 11 year old daughter named Charlotte
just diagnosed with cerebral palsy this past July.  At birth,
even though she had suffered an in utero stroke/hemmorrage and
was 4 weeks premature, she was incorrectly diagnosed with
microcephaly. Her head size ran right on/underneath the norm line
at birth, hence microcephaly.

We were referred to a neurologist who concurred with this
diagnosis. Charlotte did not walk until 18 months of age, by
which time we had visited an orthopedic doctor. He felt what he
stated was the mildest degree of spasticity in her feet/heels and
urged us to consult her neurologist again.  He also found that
she had mild scoliosis.  We returned to the neurologist who told
us he found no evidence of cp.

At about 3 years of age Charlotte began experiencing "leg
problems'. These episodes/problems involved Charlotte in a seated
postion with her legs extended straight out in front of her,
ankles crossed and arms extended straight down into the lap with
wrists crossed.  This phenonmena came and went with no
ascertainable regularity and also might have a duration of just
one afternoon or go on every day for a month.  Charlotte would
say she hurt from the knees up into her lower back and many times
would wet herself.  While she could "break" the problem by
standing and walking she would invariably have to sit back down
and it would begin again.

We videotaped an episode for her former neurologist who viewed it
and told us he thought it was something sexual.  Needless to say
my husband imparted to the neurologist what he thought of him.

Sometime in this time frame with the orthopedist and our gp as
our only support they recommended that Charlotte get as much
exercise as possible due to the muscle tightness and very slight
right side weakness.  She joined the YMCA swim team and was a
member for three years during which time we had no leg episodes.
Her school work end of 4th grade begin to suffer despite her best
efforts and we removed her from the team so she could keep up in
school.  She still failed 5th grade and the leg problems came
back.

At our wits end we let the district evaluate her and their
screening which did not even involve an IQ test said she was fine
with no learning disabilities.  Really at our wits end we
consulted my husband's neurologist ( my husband Barney has
epillepsy).  He recommended a colleague who was a pediatric
neurologist.  This was the doctor we saw in July of this year. He
told me the sad thing was that it was'nt that hard to diagnose cp
and someone certainly should have done it before she was eleven
years old.  He sent us to another doctor, of psychology, for her
to be  tested and it turns out her performance IQ is 34 points
below her verbal IQ.

Prior to school, since our district would'nt even return our
calls, we placed Charlotte in a private school for the learning
disabled rather than have her go through repeating 5th grade at
her old school and being made fun of.  Currently she continues
regular appointments with the new neurologist we have a follow up
with the psychologist and a yet to come appointment with a
pediatric urologist(her neurologist feels her intermittent
spasticity may also involve her bladder). Her neurologist has
also placed her on gabitral to try to control the intermttent
spasticity, he does not feel she has seizures but says the
gabitral has the side effect of being an antispasmodic without
the major anesthetic affects the other drugs have.

He has also written our school district to let them know that her
school eval should have involved an OT and a PT eval and they
will need to do this for her.


I realize this is probably one of the longest introductions in
your net groups history but I don't know how to synonsize 11
years any better.  I would like to correspond with others but
joined another net group prior to yours and while they were very
supportive I found I did'nt understand what they were
corresponding about.  I don't know any of the abbreviations for
equipment used to assist people with cp etc...etc I would like to
join in but please be patient if I ask stupid questions. Thanks
to any of you who waded all the way through this I feel sainthood
is surely in your future.


Thanks, Thanks, Thanks

Vera Osborne

PS - I have 4 other children Noel 22,  Joshua 13,  Anna 10, and
Joseph fidgety fearsome feisty 5 we are in South Carolina


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--
Deri James