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Scoliosis |
Hi, my daughter Aimee has type 3. She is 9 now, attends mainstream school & doing very well. Aimee has a stairlift which has proved fantastic in helping her gain access to her bedroom & uses a wheelchair for long distance walking (though her steering is awful)!
The question I'd like to pose is, Aimee's physio has noticed that her spine has started to curve quite considerably within the last year...though it is not "fixed" with correct posture. Aimee walks on tiptoe whenever she gets the chance, something I'm always repremanding her for, as I fear this may be contributing to her scoliosis. Aimee like most children with type 3, is extremely on the lean side, although she eats like a horse!
She wears night splints to keep her ankles loose, but her balance seems to be worsening & her "rolling gait" is very noticeable, also, she has really slowed down with her walking.
She has an appointment with her consultant (Neil Thomas) at Southampton Gen in Nov.
In general, her health is excellent...rarely catching a col, though when she does, it knocks her for six!
I feel most anxious about her scoliosis & how her mobility has declined. I thought this was something that may present itself during puberty...I really feel she is a long way from that, so I'm hoping there is someone out there who can possibly shed some light on as to why this is happening so soon?
Aimee has daily physio, goes swimming, horse riding, good balanced diet & a very active life.
I must admit, I am really concerned, so any thoughts/opinions, would be gratefully received.
Donna Grayson |
| Posted: Thu Aug 23, 2007 1:16 am |
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2 Replies |
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Re: Scoliosis |
Hi Donna
My name is Hayley and I have type 3 SMA. I had both scelosis and lower dosis which got worse and I then had it corrected at age 12 I am now 19 and have never looked back since having it done. It has improved my quality of life 10 fold. I also did regular physiotherapy, hydrotherapy, wore splints, gaitors and a night spike. I use an electric wheelchair to get me around.
I now drive a car (and ma parents up the wall), have a job and kept in mainstream school through all my education.
If you would like to ask any questions just post to me. |
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Re: Re: Scoliosis |
Hello Hayley,
Thankyou so much for your reply, it means such a lot...really. Ok, I have a question; how exactly was yr scoliosis corrected? Please understand, I'm really not a neurotic mum! Well, I was in the beginning, when Aimee was first diagnosed just before her 2nd birthday. But I've learn't through the course of time & possibly through Aimee's sheer determination to have a go at anything, life has so far thrown at her, not to wrap her up in cotton wool... To be honest, I haven't really thought about Aimee's SMA for awhile; just got on with life, the same as she does. It's only been the last 4 months or so, that I've noticed how much she has slowed down. I probably would have carried on as usual, had it not been for her physio phoning to tell me of her concern. Professionals have a really annoying way of putting the frighteners up someone, when you feel everything is going well!
Aimee returned to school today (yr 5) & went straight on a residential visit to the Isle of Wight with her classmates till Fri. The school have thought hard about the activities she will be involved in, inc, abseiling, rockclimbing, archery..."Go Aimee"! Myself & her little sister Katie (almost 8) miss her like mad already & it's only day 1!
I know Aimee will have the time of her life, tho there were a few tears as the coach left today...bless her.
It would be so nice for Aimee to perhaps have a chat to someone who has SMA 3 like her, we don't know anyone really. Aimee has started to ask questions about her SMA..of course, she is at the age, that she has become aware she is just a little different from her peers. Tho I must stress, I've always tried to make her see her "disability" in a positive way...we are all different.
So my second question is, would it be at all possible to perhaps have a chat? My e-mail is don.j.s@btinternet.com alternatively, post a reply on here.
I'm glad & reassured to know that life is good for you, as I'm sure it will be for Aimee, so once again, thankyou for your reply,
Regards,
Donna Shorney |
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