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Back brace(19 Posts)
Does anyone's dc have a back brace for scoliosis?
Dd1 has been told she will have to wear one for 23 hours a day and she is devastated.
Does anybody have experience with this ?
A friend's DD is now in Y5 and has worn one for 18 months or so.
It is very discreet, you really can't tell that she wears it even in summer dresses. Her mum helped her remove it, again very discreetly to get changed to go in a paddling pool for a while.
How old is DD1? There's a Judy Blume book. But technology will have moved on massively!
It's called Deenie, btw. Deenie is a young teen who has scoliosis. Good book. Does contain masturbation, though, hence the age question.
I had one in the 1980s and it was horrendous. I'm sure things are better technologically now. What would have made it more bearable was if my mum had bough t me some nice clothes that fitted over it, ( rather than crimplene), but the reality us it's not nice - all you can do is empathise. When she has it maybe invite her friends individually or small groups so she can build her confidence, and follow her lead on whether she wants to do things. I used to do loads in mine - I was the goalie for our hockey team as the ball didn't hurt me. Ice skating was less successful!
Do explore how likely it us to help though, I still had to have an operation, and I resented the brace wearing as it was ultimately a waste of time.
Dd1 is 13. She is so unhappy about it, we will get an appointment through in the next couple of weeks and she has been crying saying she won't go.
I will have a look at the book mentioned to see if its suitable thanks
I know someone who wore one and still ended up having surgery but my understanding of their situation was that the brace was used to slow down the progression of the curve making it possible to delay the surgery until fusion of the spine wouldn't affect the child's growth too much not to actually prevent the need for surgery. I would definately take yule's advise about exploring the situation fully and what the likely future outcome will be either way without holding anything back so she is making an informed choice.
It's a horrible age to have to face something like that as image is everything to a teenager and they don't often look at the bigger picture, just here and now. Is there a specialist nurse that she could talk to.
It sounds harsh but she'll be crying more if it progresses to the level it did with me and compromises her heart and lungs.
Get her to join some forums aimed at teenagers with scoliosis. First hand experiences from people her age will give her some confidence.
Please don't let her ignore it. I was allowed to and it got so bad.
It's hard but be as firm as you can, she'll thank you for it in the end.
I know this isn't the same situation but we had devastation when DS first got his brace. It wasn't your run of the mill train tracks . It was a removable thing which had a breathing hole to correct a very severe overbite. He couldn't have twinblocks. We also had a really narrow window of time to work with the pubertal growth spurt which may be what you have wind DD.
The brace held his jaw in such a way that he could barely speak and had to slurp the spit. He had to go to school and carry on his usual routine. It was devastating.
Initially he refused to wear it, and we had lots of tears. I had to be quite firm with him and the whole time try to get him to think about the long term reasons for it. I emailed the school to explain that he was struggling with things and to keep an eye out for him. They handled it really well and said they would only speak with him if he wasn't coping. They observed and were ready to act. As it happened he coped ok. I just had to keep saying "you are going to get through it and you will be ok"
When he sees old pictures now he is so pleased we went through with it, but as a parent it is really, really tough. I had to trust the professionals but there were times I doubted it all, though I tried not to let it show.
Sorry when I read my post back it makes it look like I haven't understood your DD will be wearing a back brace, but I do !
Different situation piggychops but definately causing some of the same issues to do with self image etc at an age where appearance matters more than anything. I'm pleased to hear you all got through it and it was worth the heartache.
I have Scoliosis, as does my 9 year old dd. I'll come back and post later but wanted to let you know about a forum I joined and found very helpful when my dd was diagnosed:
Wish it was around when I was was going through the op 23 years ago.
Lots of link to blogs written by teenagers.
I think its just one thing too many for dd1. She has coped with her other health issues remarkably well over the years (EDS, PotS, pectus excavatum) but this has really really upset her. She has just started wanting to look 'nice' and has started taking an interest in clothes etc but is upset as her chest looks different, she has a neck and shoulder problem causing one shoulder to be much higher and a big lump one side of her neck and now this with scoliosis seems to be the last straw.
She will try and refuse but sadly I think she knows there is little choice involved.
I will have a look at that forum nervo thanks
Just joined the scoliosis association so will be able to access the support on there for dd, thanks
Saw dds physio today who has expressed concerns over the back brace as she thinks given dds other health problems the muscle weakening/wastage a rigid brace will cause could be troublesome.
Obviously there is no alternative dd needs to have a back brace but she said it could cause some other issues whilst it helps with the scoliosis.
Have looked at other braces that may be more suitable but the one that seems to look as though it will benefit dd most is only available privately so iam now looking at whether any charities offer grants for things like this.
Good luck with your search. How much do you need to raise?
There is a list of charities on the family fund website under 'other help' that might be worth looking at.
Hi hedge my dd also has eds! no problem with spine but is currently in knee splints due to her patella's sliding about too much. I found that prior to getting them dd, who is 14 was adamant she would not be wearing them, not easily hidden and dd very conscious about looking different. Once dd had them fitted it did get easier, still says we are cruel for making her wear them. Have been told that they are unlikely to offer surgery due to likely hood of it failing. Hope things get better for you.
I think approx £4-5 k to cover appts and the actual brace if we have to go completely private for it. Found two charities that may offer grants so sent emails to them.
Also contacted a nhs hospital who may offer it as part of trial but not sure if dd meets their criteria.
scoliosis-support.org is a very good Uk based forum. I joined when my daughter was diagnosed in 2008. She was braced for 18 months during her adolescent growth spurts and has so far managed to avoid surgery. It is fairly quiet on there at the moment possibly due to xmas. There are also members who have EDS and pectus excavatum along with scoliosis.
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