Scoliosis-Kim,Jodie and S + anyone else.

February 12, 2006

Hi

I took Jack to see the Spinal Surgeon for the first time on Friday.

He took x-rays and said that Jack has a 45 degree scoliosis which I

know is really bad. He is going to see him again in 4 months time to

see if it has grown which I suspect is pretty likely. There is a

chance of bracing but the surgeon said surgery to stop the spine

growing anymore is quite likely sooner rather than later. This is so

scary because we just didn't see this coming. Jack struggled in his

early years in the same way as most RSS children but since then

things have generally gone so well I can't quite believe this has

now happened. Jack doesn't have one leg longer than the other and my

Grandfather that I didn't know, apparently had a bend in his back

that they thought was from rickets( but maybe not), as scoliosis is

I understand often hereditary so I'm not really sure if its anything

to do with the RSS or more a hereditary thing in Jack's case. The

spinal surgeon has told me to keep Jack on the growth hormone for

now as it has so many benefits but I hope to talk to Dr Stanhope(

Jack's Consultant in London) this week to go over this. It all seems

such a fine balance and which ever way i look at it i feel we are in

a no win situation.If he stops the growth hormone this should slow

down the scoliosis growing, but then his growth will slow down too

and he is already in andrenarche heading for puberty so I can't help

feeling frightened of stopping the GH as he is going to then miss

out on vital growing years. I am going to try and find out more

about scolisis but any more informatiom from anyone who has been or

is going through this would be appreciated in particular is there a

Cheryl S out there ?

Judy

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