Hi everybody,
I have done some posts before and received great advice. I don't think there's any easy solution to this problem, but I'm sure many of you have had to cope with this one.
My daughter Emma was diagnosed with scoliosis at 2 and braced about 6 months later. She was also recently diagnosed as being hemiplegic (a mild form of cerebral palsy, caused by a stroke at or before birth).
She has to wear her brace for 15-23 hours per day, and it does seem to have stabilised the progression of her curve.
Up until now she has tolerated her brace fairly well (moderate grumbling!), both at home and at nursery. Well she has just turned 5 yrs old and started primary school a month ago, and now I'm hearing the dreaded phrase "I want to be like all the other children", both me and the teachers are getting tears, complaints that it is "hurting", and constant pleas to "take it off". She told me that she hates wearing it at playtime because "it makes me stiff so I fall over easily" (which is probably true, when combined with the "hemi" factor). She has also started calling her right hand (the "hemi" affected one) her "naughty hand" , cos it flaps when she is excited or stressed (of course I told her that it is not a naughty hand, and that both her hands are "nice" hands).
When she first got the brace, I explained about scoliosis by talking about the sunflower we were growing that needed "something to help it grow straight". We decorated the brace with stickers, made a "brace" for teddy etc. etc. I don't have Emma's x-rays, but I have drawn pictures to try and explain scoliosis as well.
The school has been great, they have 4 or 5 other hemi kids (not braced) attending so the staff have had special training, they have all the right aids and adaptations (seats, toilets, handrails etc. etc.), the brace is removed for PE (as advised by our ortho).Given Emma's comments about the brace I don't think she would like doing "show and tell" with it.
I ordered a storybook (from "Hemihelp") about a little girl who didn't like wearing her leg brace to school, but the text seems to be pitched at a slightly older age group (8-10 yrs).
I've run out of ideas about how to explain her condition/s to her, and how to explain the importance of the brace. I just feel really down about the negative effect it's having on her self-esteem/morale.
Emma did recently get a new brace, but it has been adjusted, she's wearing a special undervest and there's no sign of any chafing etc. So I think it is all about the "social" aspects.
Any ideas about how to cope with this phase, and how to explain/boost her morale a bit?
By the way I have now been told (by the neuro) that the hemiplegia is not responsible for the scoliosis and that it is an unrelated condition, in fact the doc at the genetics clinic(who did a physical exam on me) thinks that it may be related to the fact that me, my mother and sister are all "double-jointed" (they call it "loose-limbed"), said that this factor is genetic and can influence the development of infantile scoliosis in your children. Has anybody else ever heard mention of this theory before?
Well sorry about the length of this posting, I think my own morale is at a bit of a low ebb at the moment, but any new ideas would really be appreciated.
Thanks
Kate
I have done some posts before and received great advice. I don't think there's any easy solution to this problem, but I'm sure many of you have had to cope with this one.
My daughter Emma was diagnosed with scoliosis at 2 and braced about 6 months later. She was also recently diagnosed as being hemiplegic (a mild form of cerebral palsy, caused by a stroke at or before birth).
She has to wear her brace for 15-23 hours per day, and it does seem to have stabilised the progression of her curve.
Up until now she has tolerated her brace fairly well (moderate grumbling!), both at home and at nursery. Well she has just turned 5 yrs old and started primary school a month ago, and now I'm hearing the dreaded phrase "I want to be like all the other children", both me and the teachers are getting tears, complaints that it is "hurting", and constant pleas to "take it off". She told me that she hates wearing it at playtime because "it makes me stiff so I fall over easily" (which is probably true, when combined with the "hemi" factor). She has also started calling her right hand (the "hemi" affected one) her "naughty hand" , cos it flaps when she is excited or stressed (of course I told her that it is not a naughty hand, and that both her hands are "nice" hands).
When she first got the brace, I explained about scoliosis by talking about the sunflower we were growing that needed "something to help it grow straight". We decorated the brace with stickers, made a "brace" for teddy etc. etc. I don't have Emma's x-rays, but I have drawn pictures to try and explain scoliosis as well.
The school has been great, they have 4 or 5 other hemi kids (not braced) attending so the staff have had special training, they have all the right aids and adaptations (seats, toilets, handrails etc. etc.), the brace is removed for PE (as advised by our ortho).Given Emma's comments about the brace I don't think she would like doing "show and tell" with it.
I ordered a storybook (from "Hemihelp") about a little girl who didn't like wearing her leg brace to school, but the text seems to be pitched at a slightly older age group (8-10 yrs).
I've run out of ideas about how to explain her condition/s to her, and how to explain the importance of the brace. I just feel really down about the negative effect it's having on her self-esteem/morale.
Emma did recently get a new brace, but it has been adjusted, she's wearing a special undervest and there's no sign of any chafing etc. So I think it is all about the "social" aspects.
Any ideas about how to cope with this phase, and how to explain/boost her morale a bit?
By the way I have now been told (by the neuro) that the hemiplegia is not responsible for the scoliosis and that it is an unrelated condition, in fact the doc at the genetics clinic(who did a physical exam on me) thinks that it may be related to the fact that me, my mother and sister are all "double-jointed" (they call it "loose-limbed"), said that this factor is genetic and can influence the development of infantile scoliosis in your children. Has anybody else ever heard mention of this theory before?
Well sorry about the length of this posting, I think my own morale is at a bit of a low ebb at the moment, but any new ideas would really be appreciated.
Thanks
Kate
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