Angela

--- In cerebralpalsy@yahoogroups.com, Angela Golembeski
<momslove1990@...> wrote:
>
>
> I'm sorry to hear about Chase's pain. My son Topher is also spastic
quad CP who was born at 24 weeks premature. Topher took oral Baclofen
for about 1 year with "OK" results but we were not finding increased
relief with increased dosing. He had his intrathecal Baclofen pump
implanted just over 1 year ago and we are extremely happy with the
results. It seems that each time the pump dose is increased Topher's
legs relax just a little bit more. He is sleeping better and
complains much less about pain. I would talk to your neurologist
about a Baclofen pump trial. Topher had his implanted at the
Shriner's hospital here in Massachusetts. Good luck, Angela
> aecso7n <epiphany4u@...> wrote: My name is Craig Shishido
and my sister is Liane Komatsu. I am trying
> to help her get some much needed information for her son Chase. We
> are looking for any suggestions (preferably in northern California)
> for surgical pain-reduction alternatives for Chase's ongoing
> spasticity. Please see the following situation written by my sister
> and thanks in advance for any help~
>
> Sincerely,
>
> Craig Shishido
>
> **********
>
> Chase Komatsu has been living with spastic quadriplegic cerebral palsy
> for over five years now. He was born prematurely on 11/19/02 at 25
> weeks (no IVH) and weighed in at 1lb 12 oz. Chase spent five months in
> the NICU and has been through so much in his short life.
>
> Chase is not mobile but receives OT/PT 2-3 times a week at school.
>
> No one here in Hawaii can help Chase. He is extremely spastic and
> suffers from severe pain that is caused by the constant isometric
> flexing of all his muscles (upper and lower extremities). This
> discomfort also affects his ability to sleep at night. Chase takes
> strong narcotics (Diastat and Oxycodone) to help with the pain. We
> hate to have to give him these strong medications but rather not see
> him suffer so much without it.
>
> Shriners Hospital here in Honolulu has been treating him with Botox
> injections (recently administered on Mon, 4/14) but this is only a
> short term fix (lasting not more than 2-3 months). Chase also takes
> Baclofen and Artane which really has not done anything for him.
> The Baclofen and Artane used to work well for him when he started a
> couple of years ago but he seems to have built up a tolerance to the
> medication. His Neurologist, Greg Yim has increased the dosage but it
> still does not improve his spasticity.
>
> It is so painful to see him go through all this pain and discomfort.
> Chase on good days is such a happy child who is full of life. When his
> Botox treatment wears off, his quality of life is just not there as he
> spends all his days and nights in pain. The ultimate goal of ours is
> to permanently improve Chase's quality of life. We are not asking for
> a miracle (to have him walk), we just want him to be happy and
> comfortable.
>