New to everything!
Posted on 28 July 2010
Hi Im hoping that some of you out there might be kind enough to give me any info and your experiences. My daughter of 22 months has just been diagnosed with hemiplegia. We are waiting for an MRI and a fitting for a splint plus more investigation into her vision she is up on her feet (just) and is generally a feisty adorable little person. Im hoping that I will be able to find some useful information and maybe an idea of what to expect in terms of support. To help my confusion I have only been back in the Uk for 8 months so my knowledge of current services and how things work is scant to say the least. Hope my large and rambling introduction isnt off putting - thank you in advance.
Hello,
I'm new to this as well really so don't know how much help I will be. My daughter's just over 2 and also has hemiplegia, being diagnosed in March. Regarding support, I had a guy visit from Scope who was really helpful and helped to answer questions that I had and any he didn't know he was able to find out for me, so it may be worth contacting Scope directly.
Regarding support from the NHS, one thing (coming from a family with literally no medical history and having never been in hospitals!) that I have learnt very quickly is that you must be dogged in your approach to the varying services. We have found that there have been several occasions when referrals have been 'lost' and appts delayed. So make sure that you phone regularly if promised appointments.
Is your LO having physio yet, because we have found also that that has been really effective? It was the physio who encouraged me to keep pushing for a diagnosis, as we had an MRI, but was told on at least 3 occasions that there was nothing wrong. But the physio has been really supportive and encouraging on many levels. Occupational therapy can be good, but in the area I am, we have one OT for literally most of a county so rarely get to see her.
Sorry to have written so much and I hope that this has been of some help.