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  • Botox experiences - son has CP & hydrocephalus

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    Old 09-23-2006, 10:02 AM   #1
    special-son
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    Botox experiences - son has CP & hydrocephalus

    My son is 34 mo old and his pediatric neuro rehab doctor has suggested botox injections for his spastic legs.

    Any experience (positive/negative) with Botox injections?

    Any experience from someone who also has hydrocephalus? Profound cognitive delays?

    Thank you for any input!

     
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    Old 10-21-2006, 09:01 PM   #2
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    Re: Botox experiences - son has CP & hydrocephalus

    Hello I have a 3 1/2 year old son with cp and he has had botox 2x. We had his legs done about 4 months ago and I really liked it. We are able to streach his mucels so much easer now and are making good improvement. The botox will only last about 6 mo or so but I will do it again if he needs it. Now the first time was done in his hands and I dont think I would do that again really didnt see improvement in the hands.

     
    Old 10-23-2006, 12:57 PM   #3
    joromo703
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    Re: Botox experiences - son has CP & hydrocephalus

    Our son has gotten Botox in his legs every 3-4 months for the past 3 years. It helps enormously.

    The doctor who administers the shots prescribes Versed (I might have that spelling wrong, but it is basically a generic form of liquid Valium) to calm him down. He takes it about 20 minutes before the shots, which are extremely painful for him. The Versed also helps him forget about the experience so he does not live in constant fear of it. I highly recommend it.

    Going for Botox with our son is one of the toughest things we have to do as parents. It is truly miserable. Holding him down for two minutes while the doctor gives him very painful shots is terrible for all of us. We would not do it if the results were not so dramatic.

     
    Old 10-31-2006, 07:46 AM   #4
    Melissa765
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    Re: Botox experiences - son has CP & hydrocephalus

    My suggestion is DO NOT DO IT, unless it is a last resort! I just had it done about a week and a half ago, and I'm far worse than before... I had the injections in my upper back and neck for a post-whiplash injury. I had very tight muscles, spasticity, etc. For some odd reason, the muscles are tighter, yet I can't support my head, nor can I lift my arms or move at all. The doctor said that the toxin spread to more muscles and to basically wait it out. I'm in excruciating pain, and I can't even dress myself, dry my hair, sleep, anything. My neck and shoulders are visibly red and feel very hot to the touch from all of the inflammation. They tried prescribing Valium for the severe muscle tightness and twitching, but it's doing nothing. On top of it all, I'm severely allergic to pain medications, so they can't even prescribe anything for the pain. It's awful and I wouldn't wish this on anyone. The only thing I'm suggesting is to weigh the risks and the benefits. Are your son's spastic legs worse than 3-4 months of what I described? If so, go for it. If not, I don't think it's worth the risk, especially not for someone as young as him. In any case, good luck with whatever you try!!!

     
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