Hi, my name is Kylea

khayward

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. 

janer1967

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

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

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

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.