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Round The Twist
27th December 2006, 08:58 PM
Hello,

Well as the title says, there is a possibility that my 9 yr old Daughter has Scoliosis. I have known since the summer when I was watching her on the beach and noticed that her right scapula is slightly lower than her left. Once home I had her do the 'bend over' test and was sure I could see a slight hump on her right side, my Mum said I was looking for something thats not there, but I was sure something was wrong so I took her with me to my last pre-op appointment at the RNOH with Mr Harrison, he wasn't there but his registrar was Mr Masterson and he checked her, he said I was absolutely right :( she has a small curve, I would say mid thoratic.
As time was short a note was made, that my Daughter would be x-rayed at my 6 week post-op appt.
I have that appt on the 5th of Jan and am bricking it.
I know it could come as not Scoli cos Mr Masterson said it might not be, but what are the chances of it not being Scoli with me having it?
Funnily enough my Daughter thinks wearing a brace would be 'cool' and 'fun' and can't wait to pick out the design for her first brace, but I'm not so sure about when she actually comes to having to wear it.

Ahhh I'm going on like shes already been diagnosed!!!

What I really want to know is are there any particular questions I should ask?

I know a lot about my on case but I was diagnosed at 13 yrs and was wonderig if anyone has any advice for me about my daughter please?

A very scared
Kat x

christine-1985
27th December 2006, 11:03 PM
aww liz am so sorry 2 hear that

give her a big hug from me hunni

love n hugs

christine XXX

tonibunny
27th December 2006, 11:20 PM
Oh Liz, you poor thing, you must be so worried. But look - if it is scoliosis, you'll have caught it really early because you've probably been watching your daughter like a hawk for years. If there's a curve, it might just be a tiny one that's not even big enough to be classed as scoliosis (10 degrees and under), and lots of people have slight curves in their backs.

If she does turn out to have scoliosis and is recommended for a brace, at least she has started off with a great attitude, thinking that braces are cool!

I'm sorry that I can't say anything more helpful....I'll have a think about qhat questions you should ask but my brain's not working too well at the moment (am exhausted, too much food and wine!), so in the meantime have some hugs :hug: :hug:

Toni xx

gerbo
28th December 2006, 08:24 AM
Ofcourse you need to wait till you "know" what's going on. However, if you get into bracing territory, consider looking at the "spinecor". Results for younger children with moderate curves seem excellent, and ofcourse, the spinecor is so much more wearable and bearable. There is a very long spinecor htread on the nsf forum ( http://www.scoliosis.org/forum/showthread.php?t=2733 ) , worth looking at when the time is right....

GillyG
28th December 2006, 09:37 PM
So sorry to hear about your daughter, but as Toni says, if it does turn out to be scoliosis at least you will have caught it early and she is feeling positive about bracing (at the moment, at least!)
I watch my two boys like a hawk and although my youngest's back has never given me cause for concern, I have wondered several times about my eldest's (now 16). Sometimes I think his shoulders look uneven but when I get him to do the forward bend test I can't really see any hump. Also, he seems to be quite rounded across his shoulder area and my Grandad had a hunchback which I now assume was kyphosis, but I don't know whether to worry or if it's just typical bad teenage posture.
Since I also wasn't diagnosed until about 14 and then treated with the 'watch and wait' approach (ie basically ignored), I don't know much about bracing apart from what I've read, but it does seem as if it at least keeps curves stabilised during the growing period, so it would definitely be worth trying if it does come to that.
I will be thinking about you on the 5th and hoping all turns out OK, but whatever the outcome I think they take scoliosis much more seriously these days, so she'll hopefully get a better outcome.
Love and hugs,
Gilly xx

BeckyH
28th December 2006, 10:10 PM
oh kat :( i think more than the possibility of being a terrible parent, passing scoli onto kids scares the life out of me, and i'm not 20 yet!

i think everyone's right, at least you know the nature of what you're dealing with.

the two key things to ask would be size of curve and her risser (which i'm assuming at the age of 9 would be 0). possibly ask the orthotist if she had a brace made how flexible her curve is and if there's any particularly beneficial forms of exercise you could encourage her to take up.

Amazed Jean
29th December 2006, 01:08 AM
Hey, You are of course worried. Your daughter has the best advisor in her corner -her Mom. Without question she is so lucky to have you in her corner. I can't stop you from worrying but I can advise you to get out a notebook and keep it current on what your concerns are etc. as well as if it seems to bother your daughter. Other than that pour yourself a glass of wine and KNOW that you are doing everything that is possible.

Round The Twist
29th December 2006, 03:05 PM
Thankyou all for you support, it really means a lot to me.

I think the notebook is a fantastic idea, I will start that right away.

Gerbo - I have read a little about you and your daughters story and I looked up Spinecor quite some time ago, it looks brilliant to me and so much more wearable than the older style braces but when I mentioned it to Mr Harrison (My surgeon) he turned his nose up at the idea. I have since heard rumours that the RNOH 'don't do' bracing, their policy is to watch and wait and this is something I will NOT accept for my daughter.
I read somewhere about the RNOH's trials with Spinecor and the reasons why they say it doesn't work, I understand that the Spinecor system takes a lot of work and dedication, but just how much? I need to know before I decide what action I want to take.
I want to be armed with as much knowledge as possible for the 5th of Jan.

Kat x

tonibunny
29th December 2006, 03:39 PM
Liz, unless RNOH have drastically changed their policy in recent years, I'm sure they would brace your daughter if she needed it, especially given that she's only 9. I was always braced/casted by the RNOH up until the age of ten; they have years of experience which proves that braces can prevent curves from progressing!

It might just be that they don't brace teenagers who are already on the waiting list for surgery, or they don't brace curves under 20 degrees.

Round The Twist
29th December 2006, 08:29 PM
Thanks Toni, like I said I had heard rumours and didn't know if they were true, even though I was never braced pre-surgery I want my daughter to be braced as I am sure that if its done correctly it can stop the progression of Scoli curves.

Just out of interest and because my daughter will be 10 in April 2007 - why was it decided that you were to have surgery at such a young age?
Do you reckon they might brace my daughter from now till she stops growing, cos that seems like a long time to me :-(

Cabann
29th December 2006, 09:13 PM
Originally posted by Round The Twist@Dec 29 2006, 08:29 PM

Do you reckon they might brace my daughter from now till she stops growing, cos that seems like a long time to me :-(
My 8 year old daughter has just started wearing her brace, her curve is 35 degrees. She has to wear it 20 hours a day up until the time she stops growing, who knows how long that will be. I am estimating until she is 16 or 17.

sg-ni
29th December 2006, 09:48 PM
Originally posted by Round The Twist@Dec 29 2006, 08:29 PM
Do you reckon they might brace my daughter from now till she stops growing, cos that seems like a long time to me :-(
I was braced until the doctor was sure I had finished growing, which was until I was about 19 :-o

tonibunny
29th December 2006, 11:50 PM
Hi Kat, it's because I had infantile scoliosis - my thoracic curve was already over 60 degrees (and the lumbar one was over 40) when I was first diagnosed as a baby, so they did all they could to prevent it from getting any worse so I had a chance to grow before they fused me. They originally thought that I'd need surgery aged around 9, so they did really well to hold it until I was 10. It suddenly deteriorated a lot in about October 1985 though, so I was put straight in for surgery in Jan 1986.

It was always known that I'd have to have surgery eventually because of the size of my curves to begin with.

gerbo
4th January 2007, 12:06 PM
Kat, few issues to consider

1) First and foremost you need to know what exactly the situation is, before you can consider your options and start worrying about them. X ray will be important

2) If curve under 20 degree, >> you'll have time to consider options as many would advice not too brace and w/s. If curve over 30 degree most consultants would advice to brace. In between 20-30 is a bit of a grey area, but with a positive family history and majot growthspurt to come i would have little hesitation bracing my daughter

) Choice of brace. Not many consultants in the UK support the spinecor. I am not sure whether this is because they just do not know enough about it, they know a lot and they do not like it, or out of habit and lack of interest in conservative treatment of scoliosis, or a mixture of the lot.

The way i see it, is that the evidence for the spinecor is limited, but what there is looks very good, whilst the evidence for hardbraces is more extensive, but reported outcomes are not as good. The other source of evidence is is the spinecor thread on the nsf forum which details the personal experiences of quite a few parents now, which appears to back up the results of the study.

Laura started with a hardbrace and absolutely hated it, still describing it as torture and childcruelty. The spinecor is so much easier and comfortable and has been an absolute blessing for here. Based on experiences till now i would have no hesitation recommending it.

Anyway, find out first what the exact situation is, see what advice you get, you won't be tied to one line of action, so if for example you want to try a hqardbrace first, you might like it and you continue, or you hate it and you could go elsewhere for a spinecor. All you r options will remain open for a while

hope it will go ok for you tomorrow

gerbo

andrea
5th January 2007, 04:26 PM
Hi Kat

Sorry I'm late to reply on this one, and sorry you find yourself here too. How did the appointment go today? Did you find out as much as you hoped?

Andrea
x