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Old 02-16-2013, 05:56 PM   #1
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Treatments for spasticity?

My oldest son has been diagnosed with mitochondrial disease, and his brain MRI shows leukodystrophy. Anyway, he always had lower muscle tone, until a couple of years ago, when he started to get spastic in his legs. Now it is really progressing quickly. Recently, we saw a specialist, and we discussed treatments like botox, serial casting, and orthopedic surgery. The doctor prefers to do the botox treatments, but with Gideon's other health problems, she is worried about the risks. And then, there is casting. The question is whether or not it will work?????? (I think that is what they were saying) And then the surgery, well, to me, that sounds like the most serious option. Several of his specialists are having a meeting the end of the month to discuss which options would be best for him.

I was wondering if any of you have any experience dealing with spasticity? And I am concerned about the pain the treatments will cause. So from a mama's point of view, can you tell me more? Thanks
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Old 03-01-2013, 09:49 AM   #2
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Re: Treatments for spasticity?

My dd had spasticity; the physiatrists recommended Botox. The shots only last 3 months, and the waitlist in the clinic to start the injections was 6 months. Once you had a slot on the injection cycle, you kept it. Botox typically has minimal side effects, but I understand how some kids can react differently. Myobloc is new on the market--a different protein from the botulinum--that seems to have the same cost and same minimal side effects.
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Old 03-08-2013, 09:49 PM   #3
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Re: Treatments for spasticity?

Thanks mama!
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Old 03-08-2013, 10:21 PM   #4
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Re: Treatments for spasticity?

My friend's son has one of the less common forms of cerebral palsy and has spasticity in his legs that has been getting worse. They did serial casting and botox. There was improvement with botox but he was deteriorating before they could get more appointments. He did have a weird nerve reaction to one of the injections. He did serial casting a few times. There was some improvement but not much and one time he got blisters so they had to remove them. He just got a surgery on his muscle nerves. He had it a few days ago and is still healing so time will tell. They are hoping he will be able to put his feet flat again. He used to be really close to walking then he really went downhill. He knee walks right now and that doesn't help. I'm not his mom so this is just a overview but I can ask her for more details if you want.

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Old 03-09-2013, 02:33 PM   #5
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Re: Treatments for spasticity?

Is physical therapy an option? My DS had early signs of spastic diplegia in his legs and he completely overcame it with physical therapy during the first year of life.
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