Intro and request for info

Subject:

Intro and request for info

From:

Judi Kloper <[log in to unmask]>

Reply-To:

St. John's University Cerebral Palsy List

Date:

Wed, 17 Nov 1999 19:47:38 EST

Content-Type:

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Hi!

My name is Judi Kloper and I live in Oregon, along with my husband Peter

Owens and three of our five kids. The older two were adopted as older kids

from India and now live out of the home; one lives in a group home.

Our three at home are by birth, from India and from China.

Our son, Dana, is now 17 1/2 yrs old, and came to us from India at 8 weeks

old weighing just four pounds on arrival. He is gorgeous, smart, charming,

and has severe quad. spastic and athetoid CP. He's a senior in high school

and thinking about college. This is a huge task we're starting on--exploring

colleges and careers for a kid who is so very physically limited.

Anyway, Dana has the baclofen pump (for 14 months now) and though he's had

some improvement, it's not been near as wonderful as we had heard it'd been

for others. In fact, he has wanted it out. He used to get botox injections,

which helped for a while, but then it seemed that he needed to get injections

more and more frequently. He'd gone without them for about a year and just

recently got some in his left leg cus of the pain he was having, but it only

worked for a brief time.

Last June Dana had hip surgery and hamstring release (that was in both legs,

and just the left hip was operated on.) While finally he doesn't have the

hip pain he was having, he now has incredible pain in his left upper thigh.

Can't move him from any position to another, in fact, just moving his left

leg an inch or two causes incredible pain for him. He continues to take

Klonzapin (Clonipin?) at night, along with one ibuprofen. The doctors at

Shriners in Portland haven't come up with a reason for this or a "fix," and

we are tired of going up there and saying the same thing, yet our son is in

intense pain and he cannot, nor can we, go on like this. This is supposed to

be his senior year, which means good times as well as some learning

times....but it's really been difficult for him to focus.

Therefore, we would like to seek a second opinion. If any of you in the

Seattle area could recommend some physicians for us to see (orthopedic with

specialty in CP and a neuroligist with specialty in CP, Baclofen, Botox, etc)

I sure would appreciate it.

Thanks so much.

.