RE: Baclofen

November 17, 2003

Hi KJ.

Mum's got MS and I'm convinced she is or was on Baclofen. The bad news is

that I've no idea what it is really. I'm planning to call dad (LBD) tonight.

If he's with it I'll ask....

Baclofen

Hey folks:

They have taken my mother off valium and put her on baclofen which is

supposedly less sedating. It is traditionally an MS drug. Does anyone know

about this drug and have any experience with it?

KJ

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November 7, 2008

Hi Sue.. 's been on Baclofen for two years now for spascity...and it has

really helped him.... I have not notice any side effects other than a decrease

in his spasms... he weights 47 pounds, he is on 15 mgs. in the morning and 10

at night. He tends to spasm more in the morning after waking which is why

they increased it...but he has not had increased drowsiness or changes in

school.

We see a Pediatric Physiatrist as well!! Not too many people seem to know

about them... he is one of our favorite doctors and a great compliment to the

ortho. 's only orthos surgeries were double hip osteotomies and

hamstring lengtening. I know some of the surgeries are done laproscopically

for lengthening... which is far less invasive.

I do not know anything about the ankle surgery, but imagine its a big deal with

plates and pins etc. I know that one of 's biggest side effects post

op from the hip surgery was spasms... and the baclofen helps that.

Good luck... Mom to age 11 bilateral diffuse PMG 80%

Subject: Baclofen

To: polymicrogyria

Date: Friday, November 7, 2008, 2:44 PM

Hi All.

We went to CHOP yesterday to see 's physiatrist. We, well I, have

decided to stop the Botox injections for now, as he really is getting

very little result from them after 4 years of twice yearly injections.

I just don't see putting him through it if he is not getting the

desired effects. She wants to try him on an oral med for the

spasticity and see what happens. She gave me the choice between

Baclofen and Dantrium. I chose Baclofen because Dantrium can be liver

toxic, well they both can but the Dantrium from my understanding can

cause damage very quickly and without much warning. We are starting on

5mg twice daily and increasing to 10mg after three days and then 10mg

three times a day if all goes well. Just wondering if anyone has any

experience with oral Baclofen and what side effects I should look for.

Also, my biggest concern with oral meds is the prospect of depressing

him cognitively. His cognitive skills are one of his biggest strengths

and I would hate to take any of that away. Any advice would be most

appreciated.

Also, she said that he is going to have to have surgery on his lower

legs/feet, and soon. His feet are turned outward and his ankles are

collapsing which is making his walking deteriorate. She talked about a

tendon transfer. I was thinking heel cord lengthening, but she

mentioned this other thing. Anyone with any experience with this? I

guess I will know more when I see his ortho next month.

Thanks.

Sue

Mom to Meghan(12) and (7) BFPP, moderate spastic quad CP

November 8, 2008

Thanks .

I havent started it yet. Maybe tomorrow. Glad to know it doesnt make

him drowsy. Yes. I love our physiatrist too. She is wonderful,

however, she and his ortho tend to disagree a bit, so it's like which

one do you listen to sometimes.

Thanks again.

Sue

Mom to Meghan(12) and (7)BFPP, mod spastic quad cp

http://www.caring bridge.org/visit/Cleary

>

> Subject: Baclofen

> To: polymicrogyria

> Date: Friday, November 7, 2008, 2:44 PM

>

> Hi All.

>

> We went to CHOP yesterday to see 's physiatrist. We, well I, have

> decided to stop the Botox injections for now, as he really is getting

> very little result from them after 4 years of twice yearly injections.

> I just don't see putting him through it if he is not getting the

> desired effects. She wants to try him on an oral med for the

> spasticity and see what happens. She gave me the choice between

> Baclofen and Dantrium. I chose Baclofen because Dantrium can be liver

> toxic, well they both can but the Dantrium from my understanding can

> cause damage very quickly and without much warning. We are starting on

> 5mg twice daily and increasing to 10mg after three days and then 10mg

> three times a day if all goes well. Just wondering if anyone has any

> experience with oral Baclofen and what side effects I should look for.

> Also, my biggest concern with oral meds is the prospect of depressing

> him cognitively. His cognitive skills are one of his biggest strengths

> and I would hate to take any of that away. Any advice would be most

> appreciated.

>

> Also, she said that he is going to have to have surgery on his lower

> legs/feet, and soon. His feet are turned outward and his ankles are

> collapsing which is making his walking deteriorate. She talked about a

> tendon transfer. I was thinking heel cord lengthening, but she

> mentioned this other thing. Anyone with any experience with this? I

> guess I will know more when I see his ortho next month.

>

> Thanks.

> Sue

> Mom to Meghan(12) and (7) BFPP, moderate spastic quad CP

>

November 9, 2008

Hi Sue,

Finlay (7, BFPP) gets Baclofen only in the evening to help him sleep. It

does not make him drowsy, but it helps relax the tension in his muscles and

he does not wake up as often as he used to. He still does not sleep through

the night, but we only get up once or twice now to help him turn over.

We believe it just makes him a bit more comfortable.

Annelies

Baclofen

> To: polymicrogyria@ <mailto:polymicrogyria%40yahoogroups.com>

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