Hi, I'm Kyle, one of the list "geezers" at 46, a spastic hemi, and have dealt with chronic pain for 8 years.

I would third Beth and Ken's opinions regarding the pediatric physiatrist.  I would NOT recommend mainstream pain management for Claire.  It's difficult to find a reputable and experienced PM clinic/doctor for straight-forward pain issues, let alone someone with as complex a history as Claire's.

See if you can get a referral to the physical medicine clinic at St. Louis Childrens' and have them manage Claire's pain therapy.  If she already has the intrathecal cath in place for the Baclofen pump, there's a good possibility that limited opiate therapy (administered intrathecally) might be effective--without the psycho-active and addictive issues she would face with oral opiate pain meds.

One thing more...stretching now will help moderate the effects of spasticity as Claire ages (just my opinion).

Kyle

----- Original Message -----
From: Elizabeth Thiers <[log in to unmask]>
Date: Tuesday, January 13, 2004 7:20 pm
Subject: Re: New to List/chronic pain

> Hello, I'm Beth T. the list OT or occupational therapist.  I'm not
> an expert
> on the surgeries you mentioned but, some of the things you may
> want to think
> about is getting your seating system assessed also, have assessed
> how long
> is she in the chair, is she ever allowed out of the chair during
> her school
> day?  Is she stuck in one position due to her chair for most of
> the day?  Is
> she involved in any exercise activity outside of therapy?  I agree
> with Ken,
> find a physiatrist.  They are rehab docs who have a good idea about
> spasticity management.  You might also want to contact St. Louis
> children'shospital which specializes in spasticity management.
>
> Beth T the OT
>
> -----Original Message-----
> From: St. John's University Cerebral Palsy List
> [[log in to unmask]] On Behalf Of ken barber
>
> Subject: Re: New to List/chronic pain
>
> hi, my name is ken barber. i am 55 and just medically
> force into retirment from the government. i have not
> dealt with the specificate chronic pain that you
> mentioned but, i was working with strain injury coused
> by the cp and dystonia in the neck, back, shoulders
> down to the fingers. this was tendonitis that i
> continued to work 22 years with it and that i am told
> permantly injured the arms etc. it is chronic pain.
> injections sometimes helps sometimes don't.
> to relieve spasms pulling already sore injured tendons
> and ligaments i take muscle relaxants, and get botox
> in the neck to slow the spinal sternosis that is in
> the c3-c7 area of my neck.
>  if the hip that is hurting has spasms in the area,
> it could be that something right in the area to relax
> the area would help, maybe botox since you are already
> using the baclofen pump.
>   i am not a doctor and this is speculation. you
> might want a physireritist. i know this is not spelled
> right, some one correct me on spelling. these
> specialist can give good advice.
>
> --- don myers <[log in to unmask]> wrote:
> > Hi,
> > I'm lucky to be Mom to a wonderful 17 year old young
> > lady who has a mind =
> > of her own! She is in the 10th grade in our local MS
> > public high school. =
> >  Claire has been using aug comm for 10 years...now a
> > Pathfinder with a =
> > head switch. She has spastic quad CP and has endured
> > successfully many =
> > surgeries...spinal fusion, Baclofen pump and two hip
> > surgeries. The =
> > latest is my subject of concern. Has anyone out
> > there had a femeral =
> > resection? It helped the hip pain at first, but is
> > now chronically =
> > painful in that hip area. Her Dr. injected it w/
> > steroids about a month =
> > ago. No change. Has anyone had this chronic pain and
> > used pain =
> > management of any sort or accupucture?=20
> > Charlotte
>