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Jill K
02-16-2004, 08:59 PM
Hi, I have had my back brace (which my mom named Mini-Me) for almost one year and it is pretty much a love hate relationship. I know the bad things about a back brace and how to fix them. If you have any problems or questions regarding a back brace I will try to answer them ASAP. Or you can try to ask my any scoliosis questions which I might not be able to answer but I'll try.

Ciera
07-16-2004, 03:00 PM
i'v warn my brace for 4 years!!!Since i was seven and now im 11!
Ciera,

valerie in WA
07-20-2004, 11:41 PM
My daughter is 5.5 yrs old and I think she'll need a brace. We go to the orthopedic the day after tomorrow. I have lots of questions. First, is it really that bad? Second, will she be able to wear jeans? What about stretch leggings, sweats, dresses? She has a lot of cute tops that are stretchy like a t-shirt (stripes, flowers, etc). Will they work? Maybe in the next size up? She currently sleeps on the top bunk. Is she going to be able to climb up there in a brace?

What do you think I should tell her? If you were her age, what would you like to be told? What else do I need to know?

Thank you.
Valerie

Alison
07-21-2004, 04:54 AM
I remember what it was like to be five and a half and in a brace :-)
Braced first at 18 months old til seven (23 out of 24 hours a day), then again at 11 until fusion at 13.

:It is always worse for the parents, mum said I cried the first 24 hours, and she put it on me with tears in her eyes, she soon decided that this was going to be a part of me, and she better stop crying, soon after that I got used to it and it became a part of me, and I just got on with life. Kids are extrememley resilient, and get used to things that make many adults cringe.

:You explain it at a level that your daughter can understand. I remember the one of the times (I did ask her a couple of times as a child, why me even though half the time I forgot it was there) I asked my mum why do I have to wear a brace she explained that, your spine is like this (bent her finger in a s shape) and that you have to wear the brace so your spine will be like this (straigthtened her finger)

:Does the bunk have a side guard rail?, if not it will need one. She might find it a little different at first, climbing with a brace, but she'll soon work out a way (I often slept on the top bunk in a brace at sleepaway camp etc).

:My mum says, make sure that she always understands what is going on and why at a level that your daughter will understand, I was always allowed to ask questions about what was going on

:If she does need a brace, decorate it/personalise it in some way. Ie putting stickers on it etc

:As a mum, mum says you need to be firm as a parent, that even though you might feel like a meanie putting it on your daughter, and she might scream, cry about it, (and you'll probably have tears in your eyes) you have to be firm and put it on and make sure it stays on

:Clothes, we personally found, that I could wear everything and anything (trust me I did :-), my brace went from under my arms to my hips), to accomadate the brace, they will probably most likely need to be in the next size or two up.

Just an offside, I would hang upside down on the monkey bars etc, in a dress and of course the brace would show, people would stare and ask mum what was wrong with me, and I'd pipe up and tell them, I've got nothing wrong with me, it's my brace. And many people would tell my mum, oh poor you, you've got a disabled daughter. Mum would look at them straight in the eye and say, she's not disabled, there are a lot worse kids off than her, she's got her legs and can talk, all that's different is that she has a brace. And many years on from pre-primary, I went to high school with a girl from pre-primary whom I hadn't seen for a long time, and she remembered me as the girl who had stickers all over her body ;-)

And here's some advice try and telax:-), breathe, keep calm


Just curious, what does WA stand for?

Alison

Email address: aliren53@yahoo.com.au (feel free to email me, Mum says she'll try and answer your questions too)

Carmell
07-21-2004, 11:38 AM
Hi Valerie,

I agree with everything Alison wrote - GREAT job Alison! The brace will be part of her. The brace should fit very snug, but never should it be painful. There may be some pressure sores at first, but if you keep in close contact with the orthotics people, those things can be worked out. A good fitting brace shouldn't hurt.

Like Alison said, the brace experience will probably be harder on you, the parent, than on her. Distraction items are good if she's not happy. Give her a chance to be in control of something. I like the idea of decorating it for her. She needs to know this is for her body, and she is in charge, to some degree. The more confident she is with the brace, the less trauma you both will have.

Does your daughter have congenital scoliosis? Or idiopathic scoliosis? What are the docs recommending for her?

Alison - WA is the abbreviation for the state of Washington, here in the USA.

My best to all

Ciera
07-21-2004, 10:16 PM
A Brace isnt Really Bad it just depend's on how you're attuituide is about it.Yes she will be able to wear Jeans,Strech leggings,sweats,Dresses & all those Cute things little Girls wear!She just might have to wear it in a size up and she should wear Longer shirts cause when you bend down in a brace the back of it by you're bottom sticks out and I Just usually dont want people to see that.and in shirts if the armpits of the shirts are alittle long they show the brace so you might want to get smaller armpits in shirts.And some of the tighter shirts i dont like to wear cause you're brace kind of stands out when you wear that.
The top Bunk Ummmm.......That pretty much is her choice cause it depends on the age and if they feel safe doing it.
Well if I Were her i'd like to be told "it wont be so bad""It'll be ok"
"Be a good sport"I know this is gonna be a little different but I Belive in you"!
THats what i'd like to here!I Will tell you more tomorrow.
my Mom would like to talk about it with you to she was wondering What you're E-Mail Address is?
Ciera,

valerie in WA
07-22-2004, 11:54 PM
Thank you Alison, Carmell, and Ciera for your words of wisdom! I really appreciate it. I love the idea of having her decorate the brace! I'm also glad to hear that it would be harder on me than on her!

The good news is that she doesn't need a brace yet. We saw the orthopedist today. Her scoliosis is juvenile idiopathic. Her upper curve is from T5-T10 and is 13*. The lower curve is from T10-L4 and is 15*. Her Risser score is zero (typical for her age.) They want to follow her with x-rays every six months until skeletal maturity, and they said there are no activity restrictions. In my heart, I think her curve will progress. I'm guessing she'll be braced within 12-18 months, but I could be wrong.

I've copied and pasted everything you guys said. I'll save it in case I do need your advice.

I would be happy to be in email contact, particularly with other moms. My email is valeriethechef@yahoo.com.

Thank you,
Valerie