Hi Cindy,

Welcome.  I am fairly new to this list, too.  We were told at Stephen's
birth that he might have problems.  We had a follow up visit with the
neonatal team when he was 1 1/2 months old and we were told then that they
would probably recommend therapy sometime in the future.  I returned home
and called our insurance company that day (we had already been assigned a
Case Manager).  We started PT the very next week (he was 2 months old).  I
am an RN and very assertive, there was no way I was going to have him wait!
 Brain development is too important and the time frame for neural pathway
development much to short to wait!

We purchased a stander when he was about 2 years old and I think we should
have started earlier.  There are many different types on the market and
they are geared to different age ranges. The same with the AFO's (Ankle
Foot Orthotics).

He underwent tendon lengthening when he was 2 years 10 months old.  The
orthopedic surgeon said this was on the young side but he had not seen a
child that young with such tight hamstrings!  I finally confronted the PT
after she gave me some vailed hints that surgery might help and then called
the doctor to have him seen.  I think he should have had the surgery
earlier but did not at the time know it was possible.  Unfortunately, he
now has a 10 degree contracture (permanent) in his right knee.  I often
wonder if it could have been prevented with earlier surgery.

I have found that the medical community is frustratingly negative and all
too often slow to recommend procedures.  If you think something needs to be
done, then it does.  Don't be afraid to assert yourself and get the help
you think your child needs.  Also, we have a pediatrician that is wonderful
and very supportive.  If you aren't getting results with your pediatrician
try asking/looking around for one that is willing to give you the needed
doctors orders.  Also, you might call your insurance company and see if
they assign Case Managers to children that have special needs.  This has
saved me valuable time and headaches getting services approved and paid.

A year or two ago Newsweek Mag. did an incredible article on the
development of the brain.  If you are interested, I'll see if I can find my
copy and tell you the date and issue.  This has helped me review brain
development and helped my husband understand better.  I have used it on
serveral occations as ammo when tring to get services or equipment!

Feel free to E-Mail me directly if you want to discuss any particular issue
([log in to unmask]).

Best Wishes,
Kim

At 02:35 PM 6/15/1999 -0400, you wrote:
>Hello,
>My name is Cindy and I have a beautiful 17 month old girl named Elizabeth=
>
>Josephine (Lizzy Jo for short) she has been diagnosed with a very mild ca=
>se
>of cp.  She has PT once a week.  Please forgive me, I've been lerking
>around on the list , and had not the curage(spelling?) to write before
>this.  But things that are mentioned here intregue me.  How young can som=
>e
>of these devices be used?  and how do you get people to listen to your
>concerns without pushing you to the side with things like" we'll wait til=
>l
>she's older."  I'm also interested in Botox and at what age those shots c=
>an
>begin?  Lizzy's hamstrings are so tight and seem to be the mainstay of he=
>r
>mobility problems.  Any advice from those of you who have delt with this
>alot longer then us would be more then welcomed.  I just want the right
>tools, so that we can help Lizzy Jo as early as possible.  Heck it took m=
>e
>6 months to convience her doctor that there was even something wrong.  No=
>w
>they are telling me it is so mild they don't want to label it CP right no=
>w.
> Please  HELP!!!!!
>              Thanks: Cindy and Lizzy Jo
>