Any experience with b otox?

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capricornchrissy
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Joined: Tue Feb 07, 2012 2:41 pm

Any experience with b otox?

Postby capricornchrissy » Tue Feb 07, 2012 2:56 pm

Hi, this is my first post on here. My son is four and he has been diagnosed with a mild form of cp. He walks with a limp on his left side. He has received physical therapy since he was 2, and wears a brace that does not seem to be helping. His physical therapist is strongly recommending use of botox and has referred me to a physician who does it. I have done some internet research and it does not seem to be researched a lot and I read that a few kids have had serious side effects. Has anyone had experience with this treatment and did it seem to help your child?

Thanks.

qualters
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Joined: Thu Apr 12, 2012 1:16 am

Re: Any experience with b otox?

Postby qualters » Thu Apr 12, 2012 1:26 am

hello i have a 3 n half year old boy with quadriplegic cerebral palsy he doesnt use his right side . the hospital gave him botox in his r arm which made his arm floppy so we worked really hard to try to get him to use it . mitchell still doesnt use it a year later but today we are going to try it in his fingers because i would try anything as long as it wont leave him with anymore damage to his arm . hope this has helped a little x

wonderstepmommie
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Joined: Thu Apr 12, 2012 8:25 am

Re: Any experience with b otox?

Postby wonderstepmommie » Thu Apr 12, 2012 8:41 am

Hi just wanted to give our side of the botox treatment situation. Our daughter is 2 and she is very spastic and is a quad. She has been stiff as a board in her legs since we can remember. Her toes point and she doesn't put weight on her feet at all. She doesn't sit up at all, she crawls but military style(combat) but drags her legs similar to dead weight. Her neuro doc suggested botox so that it will make her legs more pliable for PT. Just like the mother above stated we also wanted to try anything that would help make things a bit easier for our daughter, so we tried it. She had injections and omg right away we noticed a difference. She wiggled her toes for the first time. We had NEVER seen her do this in 2 yrs. She sat in her car seat and didn't scream(she cries/yells/screams to let us know things) she doesn't talk. PT has been going well she no longer screams or cries when we or the docs move her legs. In short botox is working well with our daughter and she has had no side-effects that we can tell. Seems our daughter is more of the severe case I think it will help your son more than you can imagine. Good thing is it is not permanent and will wear off in a few months, so if you don't think that it is working for your son then you can opt out of getting it again.
I hope this helps. Good luck to you and your son.

qualters
Posts: 2
Joined: Thu Apr 12, 2012 1:16 am

Re: Any experience with b otox?

Postby qualters » Thu Apr 12, 2012 11:21 am

been for the botox we can see a big difference this time allready but it can take a few times for it to work .

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LeaciesMum
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Location: Melbourne, Australia

Re: Any experience with b otox?

Postby LeaciesMum » Tue May 22, 2012 7:51 pm

I'm glad the botox is working for your child.

What I've learnt about botox is it doesn't treat all forms of tone... it works best on spasticity.

They like to give it to them while they are children so they can loosen the muscles and ligaments and give intensive physiotherapy while it's in effect so that the growing bones and muscles have the best possible chance to grow without the tight muscles hindering their growth.

It can take up to 5 days to take effect and should last around 6 - 9 weeks. Unfortunately we tend to slowly build a resistance to the botox and eventually it will become less effective and last for shorter periods until it's not worthwhile using it any more. The average time it takes to build a resistance is around 3+ years... some are shorter and some are longer. This is why it's so important to do all that can be done in the window that is available.

As for side effects, our Orthopedic surgeon told us that it can have ill effect on severe cases of CP and has been known to cause breathing problems and sadly even death. That is why they will no longer give it to kids with severe CP in Australia.

I don't know if your doctors have talked to you about Baclofen, but apparently that can have very good results for some kids, unfortunately with my daughter she had side effects that made her extremely teary and no longer her happy self so we stopped using it.
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KizMac
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Re: Any experience with botox?

Postby KizMac » Thu Aug 30, 2012 3:44 pm

Well that kind of answered both my questions in one!!

I am wondering if Botox will help Bree who has severe spasticity all over, but especially in her legs and neck.
She already has known breathing issues though so that doesn't leave me feeling too confident and if they don't administer Botox to severe CP kids then I doubt they would approve it anyway :(

I have heard about Baclofen and believe it was suggested when she was quite young and extremely stiff, we avoided it at that stage though and actually went onto Clobozam (Frisium) to control seizures which also worked as a strong muscle relaxant.
For anyone contemplating that I would advise against it as it essentially changed Bree from high tone to low tone while she was on it.
She had constant chest infections due to weak muscles and was sleepy all the time even on a low dose.

So I think we're back to contemplating Baclofen, but I don't know that I want to go down that road now if it makes them teary all the time :(
Also I've heard it can also be extremely dangerous in the initial adjusting stage.

All I know is that I really want Bree to be comfortable and with her muscles so stiff she most definitely is not.

Are there any other solutions people know of for extreme stiffness?
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