Hi
Long one. Sorry. Bit overwhelmed with it all.
DS (13) has been diagnosed with congenital scoliosis. I'd been pestering GPs since his babyhood as he looked scrunched up, never crawled, walked oddly, can't jump, catch or swim well (I assumed he was dyspraxic) but only now, after a growth spurt have they finally agreed to test him and it turns out he has congenital scoliosis (though it looks more like kyphosis to me - quite a hunch growing
Tbh I'm so upset for him I can't stop crying when there's no one around. He was diagnosed with ASD earlier this year and his early childhood was loaded with health issues which really took the edge off him having an ordinary life. Just when we thought we were through the woods with all his other problems, he gets a new set of diagnoses.
I really want to help him with some physical therapy. Saw a physio on NHS and she was practically useless. She suggested one really basic exercise. I then asked if I could check whether the exercises I'd devised for him (based on knowledge from a short PE training course I did 30 years ago!) would also help and she ran through them and seemed to wake up a bit and said they were all a great idea and to keep up with them. She also suggested swimming backstroke. He hates swimming - not a strong swimmer and not confident in the water, but we've agreed to go once a week and he enjoyed our first session more than either of us thought he would. But I feel it's all me and guess work on what remedial help he can give himself to strengthen and lengthen his supporting muscles so the hunch doesn't get worse.
Everything feels like such a battle at the moment. (Loads of other problems on top of this but this one is the more upsetting, as I feel so much for him, going into his teens surrounded by tall, sporty, confident kids.) It would be brilliant to meet and chat online with other parents of DC with similar medical issues and get a bit mor einfo on what help might be available. Thanks for reading.
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congenital scoliosis or kyphosis diagnosed in teens - really need some support?
8 replies
DancingDuck · 30/11/2015 14:22
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