Re: Muscle biopsy

[Guest guest]

a muscle biopsy sounds intense. has tightness on his left side, also. We

do the splint, taping also. But the more you stretch out and work the movement,

he relaxes. You can feel the tightness release. is my first child, so

when he was standing at 4 months, we thought he was going to walk earliy. DUG.

lol

Good Luck on what you do

Dianna and

Ohio, Bilateral PMG

---- suga_mamma04@... wrote:

> Hey everyone,

> My son (Micah) has CP and from what I've read, a lot of your kiddos do too.

Micah has muscle stiffness in his whole left side. He wears a DAFO on his left

leg and he sleeps with a splint on his left hand. He also wears Kinesio tape on

his left shoulder blade to help cue (not sure about the spelling) his muscles.

To make a long story short, the splint and Kinesio tape isn't working and its

been MONTHS now. His OT was wanting him to have a muscle biopsy done and I'm not

to sure about that because I heard it was painful. Do and of your

children/grandchildren have muscle stiffness? If so how are they being treated?

Have any of these children had a muscle biopsy done? Any help is greatly

appreciated. I would just like to figure out if there are any special/fun

exercises I could do with Micah to keep him from having to get a muscle biopsy.

Thanks.

> -allison

> Micah BPP.

> Sent on the Sprint® Now Network from my BlackBerry®

------------------------------------

[Guest guest]

,

My son Sam (18 yrs old BPP) has had great success over the years with Botox

for high tone in his left leg. He has also had a tendon transfer in his

wrist and thumb adductor release. No one has ever mentioned a muscle biopsy

- do you know what they would be looking for with a biopsy? Regular

stretching is the best thing I know of to help keep the muscles as loose as

possible.

Christie

>

[Guest guest]

Christie,

Did your son do casting with the botox?  I was amazed by the results.

We did tendon lengthening.

Warm water and stretching, especially when they are young (and you can do it!!).

R. Holman

PADI OWSI #193832

Subject: Re: Muscle biopsy

To: polymicrogyria

Date: Thursday, February 18, 2010, 9:37 PM

 

,

My son Sam (18 yrs old BPP) has had great success over the years with Botox

for high tone in his left leg. He has also had a tendon transfer in his

wrist and thumb adductor release. No one has ever mentioned a muscle biopsy

- do you know what they would be looking for with a biopsy? Regular

stretching is the best thing I know of to help keep the muscles as loose as

possible.

Christie

>

[Guest guest]

Hey Christie,

I have no idea what they would be looking for with a muscle biopsy. It was just

mentioned to me and I think the look on my face told his OT that I wasn't

interested. We do muscle stretching. Everyday. We do his left ankle A LOT. When

I change his diaper he'll lay there and let me stretch it for a good 5-10 mins

each time. With his wrist, me and my daughter will crawl on the floor and he'll

eventually do it. That's GREAT stretching. As for his back, I dnt know much

about what I can do with that. We try to come up with ideas but not very

successful. I'm sure his DR's can come up with something other than a muscle

biopsy. Just getting them to hear me out is the problem. Hopefully if I keep

bugging them, they will mention a different option.

-allison

Micah BPP

Sent on the Sprint® Now Network from my BlackBerry®

Re: Muscle biopsy

To: polymicrogyria

Date: Thursday, February 18, 2010, 9:37 PM

 

,

My son Sam (18 yrs old BPP) has had great success over the years with Botox

for high tone in his left leg. He has also had a tendon transfer in his

wrist and thumb adductor release. No one has ever mentioned a muscle biopsy

- do you know what they would be looking for with a biopsy? Regular

stretching is the best thing I know of to help keep the muscles as loose as

possible.

Christie

>

[Guest guest]

,

Sam did not do casting with his Botox. He does wear an AFO, though.

Starting at age 5, Sam regularly had Botox in his lower left leg, and in

his left arm, originally every 4 - 5 months, then needing it only every 8

months or so until age 10. After that, he did not need any in his leg until

just this past year (at age 18). Again, we have been really pleased with

the results. His doctor expected we would need to repeat every six months,

but he is still keeping his range of motion since the shots last July.

As for his arm, Botox worked well for relaxing his biceps, and while it

loosened his hand, it also made it too weak to really be effective. That is

why we opted for the tendon transfer for his wrist and muscle lengthening in

his thumb.

Christie

On Thu, Feb 18, 2010 at 8:45 PM, Holman

wrote:

>

>

> Christie,

> Did your son do casting with the botox? I was amazed by the results.

> We did tendon lengthening.

> Warm water and stretching, especially when they are young (and you can do

> it!!).

>

>

> R. Holman

>

>

[Guest guest]

,

How old is Micah? Does he see a physiatrist (doctor who specializes in

rehabilitation)?

Christie

>

>

> Hey Christie,

> I have no idea what they would be looking for with a muscle biopsy. It was

> just mentioned to me and I think the look on my face told his OT that I

> wasn't interested. We do muscle stretching. Everyday. We do his left ankle A

> LOT. When I change his diaper he'll lay there and let me stretch it for a

> good 5-10 mins each time. With his wrist, me and my daughter will crawl on

> the floor and he'll eventually do it. That's GREAT stretching. As for his

> back, I dnt know much about what I can do with that. We try to come up with

> ideas but not very successful. I'm sure his DR's can come up with something

> other than a muscle biopsy. Just getting them to hear me out is the problem.

> Hopefully if I keep bugging them, they will mention a different option.

> -allison

> Micah BPP

> Sent on the Sprint® Now Network from my BlackBerry®

>

>

>

>

[Guest guest]

Christie,

Micah will be 3 on the 28th of this month. And no he doesn't see a physiatrist.

I've never even heard of that. That is something I will have to look into. He's

still pretty young and so far we've done the DAFO, hand splint, Mckee splint,

along with the stretches. So I'm sure there is something else we can try instead

of going straight to surgery or biopsy's.

-allison

Micah BPP

Sent on the Sprint® Now Network from my BlackBerry®

Re: Muscle biopsy

,

How old is Micah? Does he see a physiatrist (doctor who specializes in

rehabilitation)?

Christie

>

>

> Hey Christie,

> I have no idea what they would be looking for with a muscle biopsy. It was

> just mentioned to me and I think the look on my face told his OT that I

> wasn't interested. We do muscle stretching. Everyday. We do his left ankle A

> LOT. When I change his diaper he'll lay there and let me stretch it for a

> good 5-10 mins each time. With his wrist, me and my daughter will crawl on

> the floor and he'll eventually do it. That's GREAT stretching. As for his

> back, I dnt know much about what I can do with that. We try to come up with

> ideas but not very successful. I'm sure his DR's can come up with something

> other than a muscle biopsy. Just getting them to hear me out is the problem.

> Hopefully if I keep bugging them, they will mention a different option.

> -allison

> Micah BPP

> Sent on the Sprint® Now Network from my BlackBerry®

>

>

>

>

[Guest guest]

Anyone with more knowledge than me on the subject, please correct me if I am

wrong, but I think muscle biopsy is suggested when they are testing for a

mitochondrial disorder. I think Virginia has some experience in this area.

had Botox injections through his physiatrist at CHOP every 3-6 months for 4

years. Over time they became less and less effective and we decided to stop last

year after seeing almost no benefit the last 2-3 rounds of injections. He now

has a baclofen pump to help with the spasticity.

There are a lot of people against the botox and it is not a simple procedure. It

requires sedation and the injections are painful. would get at least 20-25

injections at a time. As bad as that sounds, he was usually well enough to

return to school the next day.

We got some lasting results from the botox. 's hands were fisted all the

time when we started. She injected the area below his thumb one time and he been

able to open and close them ever since. He also was able to bend his knees on

his own after the first injections into the quads, and remains able to do so

today. We have not had great results with the baclofen pump thus far, so I

wouldn't be able recommend it. In fact if I had to do it over again, I wouldnt.

Therapy is/was the key, as intense as he can handle with lots and lots of

stretching. Hippotherapy has been wonderful for trunk control. He also had

hamstring/adductor tendon releases when he was 3 as those muscles were so tight

that they were pulling his hip out of the socket.

He is 8 now, still doesn't walk on his own, but does great in a gait trainer. He

uses a dynamic stander and can wheel himself all over. He can wheel his own

wheelchair when he is so inclined, and can drive a power chair (but thinks it

hysterical to crash, so we've decided to wait on that one). He doesn't sit by

himself, but can hold his balance for long periods in sitting when he is placed

in that position. He rolls fine and commando crawls everywhere and fast. Still

doesn't speak and probably wont, but he can sign a few words and is learning to

use a scanning device so that we can eventually move to a Dynavox. He still eats

pureed food, but can feed himself french fries, pizza crust, pretzel logs ,

cheese curls, and just about any hand held food or snack he desires. He just

doesn't eat enough of it to survive, so we feed him the pureed as the business

of nutrition and anything else is pleasure. Drinking is the same, he can drink

from a cup, but wont drink enough, so the cup is pleasure and he still takes a

bottle 3-4 times a day, 2 of which are pediasure.

Like others have told you, your child will write his/her own story. I have been

with this group for years and have yet to meet a child EXACTLY like . All

you can do is give them the tools that will take them as far as they can they

can go.

Sue

Mom to Meghan(14 on Sun.)and (8)BFPP, moderate spastic quad CP

>

> >

> >

> > Hey Christie,

> > I have no idea what they would be looking for with a muscle biopsy. It was

> > just mentioned to me and I think the look on my face told his OT that I

> > wasn't interested. We do muscle stretching. Everyday. We do his left ankle A

> > LOT. When I change his diaper he'll lay there and let me stretch it for a

> > good 5-10 mins each time. With his wrist, me and my daughter will crawl on

> > the floor and he'll eventually do it. That's GREAT stretching. As for his

> > back, I dnt know much about what I can do with that. We try to come up with

> > ideas but not very successful. I'm sure his DR's can come up with something

> > other than a muscle biopsy. Just getting them to hear me out is the problem.

> > Hopefully if I keep bugging them, they will mention a different option.

> > -allison

> > Micah BPP

> > Sent on the Sprint® Now Network from my BlackBerry®

> >

> >

> >

> >

>

>

>