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  #1  
Old 4th July 2014, 09:43 PM
Saffysmum Saffysmum is offline
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Question New mum with brace questions

Hello
My 10 year old daughter Saffy was diagnosed with Scoliosis in April after I noticed that the right side of her back was larger than the left.

Our GP referred us to the Royal National Orthopaedic Hospital in Stanmore and we had our initial consultation with Mr Noordeen this morning.

Our appointment went well and I went armed with lots of questions as a result of the information on this forum. After having an x-Ray we were told that Saffy has a right sided curve in the top half of her spine which measures 51.8 degrees.

Mr Noordeen has recommended that she wear a brace which she will need to wear for 19 hours a day including sleeping in it. Our next step is to wait for an appointment to get her measured for brace to be made.

My questions are what is the best type of vest or tshirt to wear underneath the brace. Are there any good seamless cotton top suppliers in the UK that I can source some?

How long does it usually take to get the brace made once I go to the appointment to get Saffy measured up? I completely forgot to ask as my mind was going a mile a minute this morning. It would be nice to get her accustomed to wearing it during the summer holidays but I'm not sure if my timelines are wishful thinking and that it will take a lot longer.

How did your children cope with wearing a brace to school? We have a school nurse who I have spoken to at length and she has suggested maybe doing an assembly to Saffy's year all about scoliosis. I think it is a good idea but want to make sure Saffy is happy for it to be discussed so that her friends can learn more about scoliosis and why she needs to wear a brace.

Also has anyone had any success with the brace reducing the curve or stopping it from progressing further?

Thanks
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  #2  
Old 9th July 2014, 06:30 PM
Lucy S Lucy S is offline
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Default Re: New mum with brace questions

Hi. My son was fitted with a brace when he was 3 after having growth rod surgery. From being cast to brace arriving took two days! He's a patient at GOSH but I don't see why that would make a difference.

He wore ordinary vests but maybe inside out? I can't quite remember - sorry! He ended up ditching the vest & wore the brace over his t-shirt/top (even at school) as he got so hot.

His head teacher explained to each class at his school why Jake was wearing a brace & he was happy to answer questions. Think he was quite proud of it!

He's 8 now & was told after surgery in April that he doesn't need to wear it if he doesn't want to. Different surgeon, different ideas I think.
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  #3  
Old 11th July 2014, 08:30 PM
Saffysmum Saffysmum is offline
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Default Re: New mum with brace questions

Thank you for the information Lucy. I have just received the appointment for the brace casting which is 20th August so it would be lovely if the time taken to get the brace was that quick.

My daughter has been worried about it but I have been trying to find as many positive examples online for her as possible. I found a list called 101 reasons to love your brace which is lighthearted and funny and she is feeling more positive. She has also told her best friend about her scoliosis and having to wear a brace and she was very supportive as I knew she would be.

I am going to make sure she has a lovely summer holiday beforehand as this will probably be her last brace free one for a while. Lots of day trips planned😃
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  #4  
Old 15th July 2014, 02:49 AM
Momhelp Momhelp is offline
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Smile Re: New mum with brace questions

Hi there, I too have a daughter who was just fitted for a brace about 2 months ago. I feel as if I know how you feel...personally I couldn't sleep, looking for success stories, trying to reassure my daughter, rethinking the treatment options...it does get easier. Especially after the brace has been worn a few months. Ok, as for clothes...here is what works for us: (we are in the US)...any under shirts which are seamless...little camisoles work which are lightweight. They should be tight, so no wrinkles irritate her skin. There are some online at Hopes Closet. This is a website made by a mom-daughter team specifically for girls with scoliosis. They come in nice colors, and some have a cap to cover the highest part of the brace near the arm. They are long too, so they come down past the brace. We actually can wear the same jeans by looping a rubber band through the button hole, double back and loop around the button. Long shirts are in style over here..and layering...so there is a benefit.

Bless you, wish I could talk or help you more....I truly know how it breaks your heart, but there is something good that I find in this mess for us anyway....we talk a lot, and we realize that we will come out of this one way or another...we are keeping our mom daughter teen relationship in tact through all of this, which isn't so easy!

Go easy own yourself mum!
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  #5  
Old 15th July 2014, 12:58 PM
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nicolsparents nicolsparents is online now
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Default Re: New mum with brace questions

My son is now 17 and has had brace for a few years. We get his vests from Allard UK, a company in Ireland. His experience has been positive and he adjusted well to the brace although he found the initial two weeks hard. We always knew that the brace wouldn't stop his scoliosis progressing, but would slow it down hopefully, as he also had growth problems. It hasn't stopped him doing anything, he just took it off to continue with his karate and we have been on holiday with it with no problems. Good luck. XX
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