Cerebral palsy - please help!

[AnnabelleQ]

Hi, I’m really worried about my daughter’s cerebral palsy diagnosis - I’m wondering whether she actually has a genetic disorder which is more progressive. Can anyone share their cerebral palsy diagnosis story please? Or anything that might help! She was full term, water birth, nothing I was aware of at the time?! Thanks.

Could you ask for genetic testing? I know that there is medical research in this area where CP may be caused by genetics?

Thanks @plinkyblonk I’ve asked for this now but the NHS consultant is being really slow about it. She says she’s busy and will get to the paperwork in a few weeks. Bit rubbish seeing as my daughter had her blood test at the start of March and it takes months - possibly even a year - to get the results once she does the paperwork. I guess it could be argued what’s the hurry and it is what it is BUT there’s the chance it could affect treatment or surgery options, to at least know what we’re dealing with. In the meantime, I’m trying to find out about options.

I was diagnosed at 4 but under services from about 2 which is when they realised there was something going on but at that point they weren't sure what. They went back and forth over whether it was CP or spina bifida but they did an MRI head which confirmed cerebral palsy. There were no complications at all with my birth. I wasn't premature and didn't show any signs of distress during labour at all. At the time it was pretty much seen as textbook.

@Mousecat94 what are your symptoms?

Left hemiplegia. My left leg is mainly affected and I have a lot of rotation in all my joints and everything is quite tight but I'm able to walk without any major issues. I have a lot of pain particularly in my left hip but it's manageable and also I don't help myself because I work as a nurse so I'm on my feet a lot. I have quite poor fine motor skills with my left hand so I over compensate a lot with my right. I also have a problem with foot drop with my left foot particularly when I'm tired.