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congenital scoliosis or kyphosis diagnosed in teens - really need some support?

(9 Posts)
DancingDuck Mon 30-Nov-15 14:22:52

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 sad

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.

DancingDuck Mon 30-Nov-15 17:47:02

Bump. sad

Does no one have a child with scoliosis? I know congenital variations are very rare but if anyone has any advice of any sort, especially about how to deal with self consciousness in teens, I'd really welcome it.

redbeard Mon 30-Nov-15 19:35:54

Hi, my daughter has idiopathic scoliosis, she is 15. There is a really good website called SAUK. It has a forum where you can talk to other parents and has been very helpful. I think they charge a small fee (maybe £15) to join, but it has been really useful . They also have a facebook page . Hope this helps , please ask me anything if you want to.

DancingDuck Mon 30-Nov-15 21:45:35

Thank you redbeard. Funnily enough I just found SAUK this evening while browsing online.
What treatment has your daughter had?

redbeard Tue 01-Dec-15 06:55:18

Hi, my daughters curves were at a severe degree when we found she had scoliosis. She had surgery 18 months ago.

DancingDuck Tue 01-Dec-15 08:53:05

How is she? Is she glad of the surgery? Has it lessened the strain on her spine? Is her mobility OK? Has it helped her confidence at all, or was that never a problem?

DancingDuck Tue 01-Dec-15 08:54:11

And thank you for chatting about this.

redbeard Tue 01-Dec-15 09:16:39

Hi, It was obviously major surgery ,and she is still recovering now, although was able to do most things as normal by 6-9 months. She went back to school after 2 months. Her spine is now stable and cannot curve more , which was the reason for doing the surgery.

We had no idea she even had scoliosis until around 7 months before she had the surgery, she was complaining of some back pain , and it was picked up by a x-ray.

She is glad she had the operation ,she is not that concerned with the scar , nor was she with the fact she isn't quite straight when standing.

She has some loss of movement around her hips from side to side , but that is because her spine had to be fused quite low down. Her mobility is pretty much back to normal , bending is a little tricky but she finds ways around it

Do you know what degree your son's curve is? Is he being seen by a specialist?

I don't mind answering any questions you might have.

DancingDuck Tue 01-Dec-15 09:39:43

I'm not sure what degree the curve is. They mixed up the X rays so the consultant hasn't seen them yet. We got the MRI scan results back which clearly showed the cause but the consultant wants to monitor the curve for now. DS is 13 and it only really showed up after a growth spurt which created a hunch rather than him growing taller.

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