Hi, my name is Kylea

khayward
khayward Online Community Member Posts: 2 Listener
in Start here and say hello!
My 8yr old daughter has been diagnosed with HSP and it affects her feet and lower limbs at the moment. I am trying to find out as much as possible, how quick it’s progressed for others, what I need to look out for to be able to help her and any other advice you can give. She’s had genetic blood tests, we are just waiting for the results. 

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  • janer1967
    janer1967 Online Community Member Posts: 21,922 Championing
    Hi and welcome to the community 

    Sorry to hear about your daughter we can share experience on here but not give medical advice 

    I would suggest you talk to her gp or specialist 

    Feel free to have a look round the site to see if you can find anything of help 
  • chiarieds
    chiarieds Online Community Member Posts: 16,688 Championing
    Hi @khayward - & welcome to the community.  Has your daughter just been diagnosed? Has she been offered physiotherapy? I'm a bit surprised genetic tests have been done; do you know why? Scope has put some info together here: https://www.scope.org.uk/advice-and-support/cerebral-palsy/     & I will also ask our Cerebral Palsy Specialist Information Officer to chat with you after the weekend. @Richard_Scope please would you kindly chat to this parent.
  • khayward
    khayward Online Community Member Posts: 2 Listener
    We’ve seen different neurologist and orthopaedic doctors over the last six months and had an MRI scan, we was finally diagnosed yesterday. The neurologist recommended a genetic test but did say there is only 60% chance that it will show which type she has. We are being referred to physio, podiatrist and orthopaedic surgeon over the next couple of weeks 
  • chiarieds
    chiarieds Online Community Member Posts: 16,688 Championing
    Hi @khayward - thank you for replying. Pleased to read you're daughter's getting appropriate referrals soon. As a physio who specialised in treating children with CP, altho this was along time ago, I know it can benefit a child so much, which I'm sure Richard will concur with.
    A recent diagnosis is a lot to take in, but great you are wanting to find out more. As every child is different, there are no hard & fast rules, just help your daughter achieve her goals, not yours, & know you are an important member of the team that helps determine her care. :)

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