Well we finally got to Sheffield childrens hospital and had our consultation with the spinal team there
We have been given more information and they seem to have a lot more relaxed approach to the whole thing
Lucy was xrayed sitting again and it showed her curve at 45 degrees and looked pretty awful on the xray but the consultant told me not to pay too much attention to the xray as it was really hard to get a true reading at this age and the fact that she was sitting would make it worse.
I asked him if Lucy was his child,what actions would he take and to my surprise he said he would do nothing but keep a check on it.
This has thrown anothet cogg in the wheel as I had never thought just leaving it was an option but in a way has made me feel a lot better,he thinks she is so flexible that it will not husr to leave it a while longer before bracing or looking at other treatment
One thing he did say was that no way would she be needing surgery anytime soon as her back has time to correct itsself yet
I am now in a state of confusion wondering what steps to take next,I think at the back of my mind I know I will carry on with the brace but they are going to make her a new brace,one that she will be more comfortable in hopefully.
We go back at the end of the month to get her fitted
Hi Lucy's Mum, this is Bretagne, Mum to Aaron (11 mos) in Maryland, USA. Aaron has PWS and spinal curve of 32 degrees and we are embarking on bracing in a few weeks. I've turned up some interesting articles on surgery if you are interested. Mostly just wanted to thank you for your lovely blog and for sharing your experiences and darling girl with other parents of kids with PWS. Always looking for a pen pal if you are of a mind...