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