I have been in contact with a mother whose child had SDR surgery in
April with Dr. Parks and she told me he is leaving in Aug. going to
Texas. They say he is the "best". the SDR surgery actually has a 6
months intense pt schedule, we will be starting it in Nov after SDR
surgery. We will have to go 4 times a week as well as doing the
daily exercises at home.
Does anyone have any tips on stretching the difficult child. My son
hates to be stretched. I've gotta find some tricks, it's making it
difficult on me and his pt.

--- In cerebral_palsy_support@yahoogroups.com, Michelle Carroll
<odyton03@...> wrote:
>
> Sounds like you are doing all you CAN do for a 21/2 year old. I
mean, most things for treatment other then botox and some ortho
surgeries aren't usually done until the child has gotten bigger. I
know people that when botox didn't work they went to the baclofen
pump, which they found great results in, but there are always risks
with those pumps, infections malfunctions, etc. There is a doctor
in St. Louis that I am taking my son to see this next fall named Dr.
Park ( although rumor has it he is going to be leaving St. Louis )
he does a surgery called a Selective Dorsal Rhizotomy. But the
child has to be assested well, and after surgery follows a 4 week
intense therapy session. My son is almost 3, and he doesn't walk
either, and at first I thought he was suffering because I do have a
4 year old who is " normal" and I could see the pain in Cody's eyes
when he just wanted to get up and run and play with his brother.
But Cody has adapted well, and so has my 4 year old.
> They now play with each other just in a different way, so he
isn't suffering, he just has to do things differently. There are
other treatments out there, but it has been my experience that when
the kids are as young as ours, they like to give them the best
chance at progressing on their own before doing major treatments.
Like I said the Baclofen pump is a good choice if you can out weigh
the good with the bad, but at least Cody's neurosurgeon wont even
consider it until the kids are at LEAST 40 pounds. But every doc is
different. I think therapy with the professionals and therapy just
as a daily routine help. Cody didn't even need botox the last time
we were in, because I had started him on such a good stretching
program, but he has surgery last month and he was laid up for the
entire month and so he has tightened up, and he has gone through a
growth sprurt at the same time so now we need the botox. Cody likes
to ride a bike, he can't really ride it on his own, we
> have to push him, but the pedal rotations keep his legs moving,
and keep him active. They make special bikes just for kids like
ours, and Dr. Jan from St. Louis who is a CP sufferer herself, and
the BIGGEST advocte for research and runs the CP clinic at St. Louis
Children's Hospital, says just keeping kids active and exerciseing
them can be the biggest improvment. You can always go to see her
too, but she was just here in March, doing a CP confrence, and she
has a one year waiting list. So that is another option. Also I
dont know where you live, but here in Cincinnati the UCP helps fund
a program here for kids with CP from infants until about 6 where
they get therapy in a group setting, so they still get their one on
one attention but they also look up to their peers and can learn
from them at the same time. Before Cody started there he could
barely crawl, he was 19 months old, couldn't hold a cup or bottle,
couldn't even put any weight on his legs to stand assisted.
> Now after a year he crawls faster then most can run, he eats and
drinks on his own, and can stand independently for 30 seconds. So
you could always look for a program like that. The nice thing about
Cody's group is that I dont' have to be there with him I get to take
a 2 hour break while he is in "school". Hope that gives you some
stuff to think about and some stuff to talk to your doctors about.
Best of luck.
>
> Michelle
> mom to Peyton 4, Cody 2 ( almost 3, with CP, hydrocephalus,
former preemie of 27 weeks, beating all the odds. ) and little Riley
due to join our family in late August.
>
> mistyhelt <mistyhelt@...> wrote:
> My son was diagnosed with cp at 1 and I am a single mom
trying to deal
> with this on my own and it has been really hard sometimes. I have
had
> moments where it seemd like it is too much to handle and then I
look
> and him and realize if he can continue fighting then the least I
can
> do is be there with him and help him fight. He currently gets all
3
> therapies and we have started botox I am not sure what else I can
do
> to help him or if there are any other options. If you could help
me
> with this I would appreciate it. My name is Misty and my sons name
is
> Ernie he is now 2 1/2. He does not walk and wants to potty train
and
> so we have been trying I just dont know what else to do for him. I
am
> so glad that I found this group I really need the support.
>
>
>
>
>
>
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