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23rd February 2006, 10:34 PM
:oops: hi everyone this website looks great and helpful, im here to ask for any advice my daughter who is seven has recently been diagnosed with congenital scoliosis, 37 degree curviture both ways and has failure of segmentation or possibly a small hemivertebra too. We have been lucky in how quickly she has been seen she has had an mri scan-awaiting results and has just had the plaster cast made for her brace which should be ready in a few weeks. There is a very high possibility of surgery and we will have to wait for mri results too. If anyone has any advice of helpful tips with regards to helping her with the adaption to wearing a brace or their emotional wellbeing please let me know as just want to help her in anyway i can as by the looks of the messages alot of people are going through this too. i would appreciate any helpful advice, thankyou for your time.
23rd February 2006, 10:36 PM
Just wanted to say hi and :welcome2:
23rd February 2006, 10:41 PM
Welcome to SSO i'm glad you found us. There's loads of experience on this board in respect o brace and brace compliance. Either Gerbo, Sealy or Andrea should be able to give you loads of advice.
I hope you enjoy the forums and you find all the info you need.
23rd February 2006, 11:05 PM
Welcome to SSO mshell :wave: glad you found us!
Bracing is horrid, but it's always worth it, even when surgery is inevitable as it was with me. The things I can think of are that your daughter may need to wear clothing a size larger to accommodate the brace; wean her into it gradually so her skin gets a chance to thicken and keep the brace comfortable; stretchy stuff like tracksuit bottoms are really useful because they fit over the bottom of the brace well.
Also, Knit-Rite Torso Interfaces (http://www.knitrite.com/display.php?t=9) are imported by Gilbert and Mellish (http://www.gilbert-mellish.co.uk/products/Distribution/d_p/d_p17.shtml) in Birmingham. They're expensive but are seamless, comfy, stretchy brace liners that stay dry for ages and are really worth it :-)
Let us know how the brace fitting and MRI goes!
24th February 2006, 07:33 PM
Hi mshell and welcome,
when your daughter gets her brace, feel free to transfer into the non surgical form if you wish, where Gerbo and the others who have experience of bracing will be delighted to offer any help you may need.
Good luck with the rest of the trests and let us know how you both get on.
26th February 2006, 07:48 PM
My daughter wore serial casts for a long time and is now in the spinecor brace, so we don't have much experience with rigid bracing. I would make sure that there are huge cutouts in the chest area to allow for rib cage expansion and I would also make sure that the brace is not creating more problems by pushing in the wrong areas. I guess by bracing your daughter's congenital curve they want to ensure that her healthy vertebrae continue to grow straight. I've read that a hemivertebrae - depending on the location - can be easily surgically managed. There is a really excellent presentation on congenital scoliosis by my daughter's previous ortho ( Douglas Hedden ) here:
13th March 2006, 01:10 AM
I'm not sure if I've said this on here before, but when I was in a brace I used to ask for some of the tubular bandage they used when making the cast (a new piece obviously), wash it a few times (I found it a little scratchy until it had a good load of fabric conditioner through it) then wore that under the brace. I ended up with quite a collection of pieces, and if I found them to be falling down or anything I'd simply fold the ends over and tape them to the outside of the brace! Completely seamless and free, though I'm not sure how many hospitals other than Stanmore would mind giving the stuff away!
14th March 2006, 05:50 PM
Hi Michelle (this is a guess)
This is never going to be easy, for either parents or child, although it is said that usually thinhs are worse for the parents than for child, children do tend tp put up the fuss potentially, and might have very upsetting emotional outbursts, but eventually seem to be much more resilient and adaptive.
Our Laura was nearly 11 when she got her first brace, and we were advised to keep it on for the recommended number of hours/day from the beginning, i.e., no building up. This did have the advantage of knowing what you were dealing with from the beginning, rather than adding a bit of extra bother every day.
First day was emotionally very, very difficult, and if that is similar for you, best way of dealing with it is to be very matter of fact about that she has to wear it and she has no choice, but at the other side be very understanding that she might not like it, and could be upset. Lo5ts of cuddles might be required, but however upset, stick to whatever wearing schedule had been agreed
To make the actual wearing more comfortable, we found that tight fitting vests were the best, as they wouldn't fold underneath the brace. We tried lots of different shops, usually got them one or two sizes to small, so do wouild fir as tight as possible. Have to say that the best ones are the ones which have been mentioned before, and which can be got through gilbert and mellish. Their phonenumber is on their webside, and they do take orders by phone
First night was quite difficult and she was very uncomfortable on a relatively hard mattress.I addressed this the night after by putting a doublefoulded continental quilt on top of her mattrass, for her to sleep on, this helped a lot and made her nights much easier
Over the weeks/ months things did get easier and till a large extend she did accept things and really coped well, and at times could forget she was wearing it.
For initial advice this wil do I suppose, happy to add anything if you want me to. Also do realise, it might all be different for you and your daughter
Do feel free to come back for a chat / furthewr advice if necessary
best wishes and take care
(ps, which hospital/ consultant are you dealing with?)
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