View Full Version : Newbie with an 8 year old with scoliosis
28th December 2006, 09:00 PM
My daughter was diagnosed with scoliosis at the age of 5 and has just now started to wear a brace. Her curve is 35 degrees and she was started to have some pain these past few month. She has been wearing the brace now for 2 weeks and it has been a transition for her. She feels nervous and different at school. I am looking for tips and advice on how to help her feel more comfortable with her self and the brace. She needs to wear it 20 hours a day, at least she gets a four hour break. Any advice on how to build up her self esteem?
28th December 2006, 09:17 PM
Hiya Cabann, welcome to SSO :welcome2:
Does your daughter understand why she needs to wear her brace? If you explain that really it's not much different to wearing glasses - people wear glasses because they need help with their sight, and people wear back braces to help their backs grow straight - then this will help her to not feel so "different" - after all, lots of kids wear glasses! Also, she'll be able to explain this to any kids who are curious as to why she has to wear it.
When does she have her four hour break? If she can see other kids at times when she is out of her brace, ie for birthday parties or playdates, this will help them to see that she's no different whether she's wearing it or not.
You didn't mention what sort of brace she's wearing, but most braces these days tend to be "corset style" braces (called TLSOs) which are pretty well hidden under clothing anyway, so unless someone bumps into her then really they're unlikely to know that she's even wearing it :)
Good luck with it all anyway! Do you know what sort of scoliosis she has?
28th December 2006, 11:35 PM
Thank You for the warm welcome. She has Juvenile idiopathic scoliosis with a thoracic curve.
Her 4 hour break is at our discretion. She takes the brace off when she has PE or also when she bowls on her bowling team. She usually wants a break in the morning after she first wakes up or when her side starts hurting, but she hasn't complained about her side today since her brace was rounded a bit more on the side yesterday.
She has had two MRIs and 2 sets of x-rays but she still needs to get a set of x-rays done with her brace on. We are waiting to find out when that appt. will be.
I guess her main problem right now is sleeping in the brace, she says it feels "weird", she wont go into too much other detail. Her brace is pretty well hidden under her clothes and she was very happy when she received a few new hoody shirts to wear over her brace, what girl doesn't love new clothes.
We have always been open with her about her spine and it was no surprise to her when she was told she needed to wear a brace, but when it came time for us to pick the brace up, Destiny realized things would be a tad bit different. She has a hard time picking things up off the floor and she has to take it off when she needs to use the restroom. The school has been wonderful with their support and they let her use the restroom in the office and a secretary, whom I have known when my 18 year old started Kindergarten, helps Destiny with the straps on the back of the brace as she is putting it back on. Destiny can take it off by herself now.
This is still a learning process for us all.
28th December 2006, 11:46 PM
Itæll take some time for her to get used to sleeping in it...and likewise for doing things like going to the bathroom and picking stuff up with the brace on.
I found the best way to sleep when I was in the boston brace for 15+ years was to sleep on my stomach... I couldnt really sleep atall when laying on my back, was rightan uncomfortable.
All the best
28th December 2006, 11:53 PM
Thank You, I will recommend to her about sleeping on her stomach. I know she usually likes to sleep on her side.
I was told that if she is actually swimming in a pool that it counts as brace time, even though she wouldn't be wearing it. Is that true? She loves to swim in the summer time and I can just imagine that wearing the brace will tend to be warm.
29th December 2006, 04:37 PM
Ive never heard of that before but should check with her doctor just to make sure and to see what he thinks. But I know from myself, that I was allowed the 1 hour out of the brace each day and that was that, nomatter what I was at. But sometimes Id have been out of it a bit longer if I did go to the pool which was rarely.
Its really best to try and keep within the hours the doctor says to be in the brace. Speaking from experience, it gets very easy to get a bit lax and say "aw another half hour wont make a difference", then it just sort of tended to build up over time.
Also when it was warm here, a regular change of vest into a fresh one (or whatever your daughter wears under her brace) will help quite a bit.
29th December 2006, 05:17 PM
Thanks for the info. I will be making a list of new questions for her doctor on her next visit. But one thing has been bothering me. We had the stomach flu go around here just as Destiny started wearing her brace, only my 18 and 16 year old got it but I was wondering if Destiny got the flu would she still need to wear the brace. After watching what my boys went through with their stomachs, not being able to keep anything down for days, and Destiny at times says her stomach feels weird I am concerned that the brace would put too much pressure on her tummy if she happened to get sick.
This is all a learning process to me so all advice is helpful. Thank You
29th December 2006, 09:44 PM
It would just depends really on how she feels if she had a sore stomach...sometimes for me just loosening the straps would have made me feel better and other times Id have had to take the brace off to feel a bit better, theres not really much else you can do other than the usual stuff for a sore stomach.
Since you mentioned pressure on her stomach, I found when eating, I had to make sure that I didnt "stuff" myself or eat too much too fast with the brace on, otherwise a fair amount of time id boak it back up again.
30th December 2006, 12:15 AM
My daughter Lucy is 10 and currently wearing a brace for a 43 degree curve. She was diagnosed with idiopathic scoliosis when she was 6 and a half. She has been wearing her brace since July 2005. I have quite a few posts about Lucys story you may be interested in reading.
When we were told she would have to wear a brace we were very worried that it would affect Lucy's confidence and self asteem. Like you we were very open and honest with Lucy and told her why she would need to wear it and what we hoped to achieve by wearing it. We tried to encourage her to be open with her friends and tell them all about it. We explained that if the mystery was taken away from 'Lucy's back' and her friends were told all about it, they would be less inclined to make up things and question her all the time. A hard thing for a then 9 year old to take on board. We too were very lucky with the schools response and her class teacher was fantastic. Lucy told the class about her curve and took in her xrays and pictures (I have put some pictures on my gallery of her xray). The effect was that now her brace is just part of Lucy, she accepts it and so do her friends.
We have tried to encourage Lucy to be proud of her brace and her back, she has no problem with her back itself but is very conscious of her brace when we are in situations with strangers ie the swimming pool changing rooms, she does not like people to see her remove it and it is usually hidden underneath a towel when removed. Around friends and relative she is fine and will whip it off at the drop of a hat!!! :D
She has never really had a problem sleeping in it, which was a surprise to us as we thought she would have. We were recommended to use a 'V' shaped pillow, which she did try but soon disgarded and now sleeps with only one pillow. When she is out of her brace she will still bend as it she is wearing it ie straight back and bending from the knees - it has just become the way she moves.
When Lucy has been ill in the past with sickness I have removed the brace and let her recover brace free, usually Lucy will ask to have it put back on again of her own free will. Fortunately this has not happened too often and she has only been out of it for 6-8 hours at a time. When she is feeling poorly we talk about it and sort of come to a compromise usually with Lucy deciding how long to keep it off and when she wants it back on again. We have encouraged her to make some of her own decisions so that she recognises that she does have some control of it. 9 out of 10 times she makes the right decision and puts it on again. Lucy has often said that after a while it feels 'funny' not wearing it and wants to put it back on again, also her back sometimes begins to ache if it has been off for longer than normal. I havent mentioned that she wears the brace between 22-24 hours a day.
I hope some of this has been of some help to you.
31st December 2006, 06:55 PM
Hi Cabann and welcome. Unfortunately I don't have anything to add to the advice given by the other members. I have all this to come, as my daughter is just 4 and is in a cast. She doesn't remember ever being without a cast/brace and so it isn't an issue for her. Her friends never think to ask why she wears the cast - it's just Erin, and that's the way she is. Hopefully, given time, sleeping will become more comfortable. The advice about sleeping on her front should hopefully work.
Keep in touch and let us know how it's going.
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