Vera,
Welcome to the list! There is no such thing as a stupid question so feel
free to ask whatever you need to know!
----- Original Message -----
From: Vera Osborne <[log in to unmask]>
To: <[log in to unmask]>
Sent: Monday, September 27, 1999 5:29 PM
Subject: Introduction
> ---------- Begin forwarded message ----------
> 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
>
>
> ----------- End forwarded message -----------
>
> --
> Deri James
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