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BOTOX injections for children with CP

Minkesh
Minkesh Community member Posts: 2 Listener
in Cerebral palsy
Hi, my daughter is 4. She has a mild form affecting her left side.  It  has just been recommended by her physio that BOTOX may help her.  Reading up on the process and side effects has left me feeling confused as to whether it's a route we should go down, and just wondered how those who have used BOTOX have found the process and what your thoughts are.  Any information or advice would be greatly appreciated.

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  • thespiceman
    thespiceman Community member Posts: 6,388 Disability Gamechanger
    Hello @Minkesh   Pleased to meet you welcome.

    Thank you for sharing your story. Unsure of an answer to your question.

    I will first say we are a friendly supportive community.

    Also you need to speak to one of our team for some advice.  @Richard_Scope .He will contact  you on this. As he has extensive knowledge and expertise on CP. 

    Offer a solution and discuss options.

    Please take care.

    @thespiceman
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  • Minkesh
    Minkesh Community member Posts: 2 Listener
    Many thanks for your response @thespiceman
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  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    Hi @Minkesh and a warm welcome to the community! I hope you find it a supportive environment. I have CP myself and have previously had Botox. I know that people have different experiences from them. For me personally, the first few times really helped and then each time I had it they were less effective. I am tagging @Richard_Scope who is the CP information officer. If you need anything else then please do not hesitate to ask!
    Scope

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  • Richard_Scope
    Richard_Scope Posts: 3,648 Scope online community team
    Hi @Minkesh
    Great to meet you and thanks for posting, As my colleague has mentioned, people can have very different experiences of Botox. I will include some information here.
    There are also lots of useful videos on YouTube where people described their experiences with the treatment.
    It is decision that must be made alongside medical professionals but what I would say is that nobody knows your child as well as you do.
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

    'Concerned about another member's safety or wellbeing? Flag your concerns with us.' 

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  • Stayce
    Stayce Community member, CP Network Posts: 843 Pioneering
    Hi @Minkesh

    In my experience most Physios will throw Botox out there as an option. I have lost count how many have said it in passing to me. Personally I would suggest exploring with your GP a referral to a Spasticity clinic. So as to help you decide if it is the right option for your daughter.

    Remember Just because you decide to explore this option doesn’t mean you have to go through with it - it’s your choice 

     I haven’t had Botox myself (I was always been anti myself due to side effects you mention, but last year I decided to be assessed at a Spasticity Clinic to see if it would be appropriate for me  (due  to pain having increased with age in my case) and it was thought that affectvely paralysing the over active contracting muscles could potentially  make me too weak to function. In my case some of the high tone is a substitute for strength. I have Hemiplegia like your daughter

    Hope this helps 

    Best




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