Remaining politically neutral during General Election 2024


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Hi, my 8 year old son has HSP

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Gibbon
Gibbon Community member Posts: 2 Listener
edited November 2021 in Children, parents, and families
My 8 year old son has HSP. His walking is very limited and mainly uses wheelchair. He takes max dose oral baclofen. He’s been offered an ITB pump to help reduce spasticity and make everything a bit easier. Currently weighing up the benefits, versus risks and implications of living with lifelong implant. Would be interested to hear your views and if anyone has been through similar experience. Thanks!

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  • chiarieds
    chiarieds Community member Posts: 16,162 Disability Gamechanger
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    Hi @Gibbon - & welcome to the community. Thank you for joining & sharing about your son. Scope has some info on ITB here: https://www.scope.org.uk/advice-and-support/intrathecal-baclofen-therapy/
    I will also ask our CP Specialist Information Officer to ask for his advice. @Richard_Scope please would you help here, thank you.
  • Ross_Alumni
    Ross_Alumni Scope alumni Posts: 7,652 Disability Gamechanger
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    Hello @Gibbon

    Welcome to the community, glad you've joined us! 

    Thank you for telling us about your son, how is he coping at the minute?
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  • Gibbon
    Gibbon Community member Posts: 2 Listener
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    Hi Ross, Hi Ross, he is able to walk a few steps in a Kaye Walker, with difficulty, lots of scissoring. Mainly reliant on wheelchair. He needs assistance with all transfers and dressing. He’s doing ok at the moment but we anticipate things will become more challenging as his condition progresses and he grows. We’ve been told that ITB therapy won’t necessarily improve walking but hopefully will make it easier. And that the reduction in his tone will help daily activities easier - dressing etc. It’s also hoped that he’ll be able to achieve more independence by being able to accessing things in his wheelchair. Self propelling in his chair is limited by his lower limb extension. Thanks for any info you can offer 
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