#1
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hello,
before i ask my question. just wanted to say hello, i've been on the site a few times recently but been a bit quiet. having a wee bit of a tough time at the moment but thats another story. anyhow....
my son has a syndrome where scoliosis is a very common feature. we seen a specialist (within his syndrome) in october of last year and he felt that he could see a twist in his spine and felt it could be the early signs of scoliosis. as he was a back specialist he didn't want to diagnoses it but felt he'd seen enough patients that had gone on to develop it. anyhow my son's caleb has told me that she just thinks its positional. my question or seeking some advice about a lyrca suit. i have done a little bit of research on the internet but just wanted to ask any parents with children with scoliosis if they felt the lyrca suit was a benefit. personally as long as it not going to be detrimental to his spine then its worth giving it ago.
anyway any thoughts welcome
thanks
#2
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hi lycra suits are fab , my little girls had one since june of last year! made such a diff for her ~ her scoliosis wasnt there @ birth she developed this positionally over a period of time but she does have a very rare condition ~ some stuff still to be diagonosed as yet ~ she will be 2 and a half soon. i would throughly recommend them but thats only my personal opinion ~ what may work for some people may not work for others. if she hadnt had one when she did her back would have got a whole lot worse.its def a positive for our little poppy. incidentally our consultants got wires crossed she still has not seen a back specialist as yet. they 4got about her ~ nothing new there ~ she seems to keep slipping through the net & its me that has 2 chase all her hospitals up to get them to liase. it was her physio & ot that assessed her 4 her lycra suit! if it had not been for this she would have been in a v.bad way by now. gets me mad ~ think i need to start kicking butts even more! Pls feel free to add me on f/book if u wanted to know more about suits. just off out now! take care & hope reading this has been of some help!
regards steph kimber x
#3
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i am lucky ~ i live in portsmouth & whilst nhs wont fund childs 1st suit here, they will subsequent ones! think its wrong how it seems to be a bloody postcode lottery ,depending on where u live as to help u get ~ it gets me mad!!!!! should b same treatment available for everyone should not just all boil down 2 money & budgets! guess should be very thankful cause they dont come cheap. to buy my daughters 1st one it came in @ a cost of £400 ; which a special charity is funding in our area.not sure who cause her therapists sorted it out for her. all the best x
#4
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Hi

My son is now 14 and wore a lycra body suit whilst he was growing to prevent scoliosis and improve the kyphosis that he had. He wore it for about 5 years and absolutely hated it (because he was older) but it did the job and he has now been discharged from the back clinic!!!

So, I would definately go for it, it worked for us.

By the way, we come under Portsmouth too Steph, probably have the same physio!

Libby
x
Hi Everyone, I have 2 boys 14 yr old with cp and 5 yr old with speech delay - both gorgeous!
#5
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Hi there,

In my experience (although it is somewhat limited with lycra suits, I'm not an expert by any means!), some people have a lot of success with Lycra suits and some do not, it all depends on the individual child and the type of condition he or she has. If your child tends to have a high body temperature and perspires a lot, they may find the suit uncomfortable/hot to wear, perhaps only a problem in warmer weather though.

I recommend following the advice of your specialist - if he/she thinks a suit would be beneficial then it may be worth trying. Some of the companies that custom-make the suits may have specialist staff that will assess your child and take detailed measurements for the suit to be made.

The NHS may not fund this type of suit for your child. If you would like to seek charitable funding for this, you may find it useful to view a list of charities providing funding for children's equipment on Living made easy for children.
Jacqui
DLF Occupational Therapist


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