Re: Scoliosis-Kim,Jodie and S + anyone else.

[Guest guest]

hi Judy

my little girl has a double curved spine and she wears

a back brace. she doesn't like it but the pain has

decreaced a lot since she got one that fits better.

make sure the people who make it know what they are

doing. My local hospital made melissa some bit when

her consultant wanted it made there it made such a big

difference. I have found out that I have also got a

curved spine so it must be hereditary her legs are

also the same size. was your child premature?

good luck

--- red4herbie wrote:

> H

> 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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[Guest guest]

hey Judy,

my christopher only has an 8 degree curve right now so far. scoliosis

runs in my family but i beleive it is also a characteristic of rss as

well (so basically there are 2 strikes against when it comes to the

scoliosis). you might want to contact katy f. to see if she has cheryl

slane's contact info. she doesnt really come on her to post maybe just

to read but i am not sure how often. good luck.

jodie c