scoliosis advice please

[monstermansmum]

Monster had his x-ray today-his scoliosis is quite alot worse and his walking is terrible at times. He leans and lurches and just recently he has been swinging his left leg from the hip without really bending it at the knee. We are seeing the consultant in clinic at school on Thursday and I wondered what options we have. I know about braces etc but have heard they are not very comfortable. Has anybody any experience of early scoliosis treatment/intervention? I dont think he's at the stage of needing an op yet but it is very common in children with Angelman Syndrome. I really dont want him to loose the limited mobility and independance that he has, and I would like to go to the appt prepared. thanks.

[PheasantPlucker]

Not sure - I will watch this with interest though as dd1 has just been diagnosed via Xray (8 years old, CP) and we are waiting for an appt with an orthopaedic surgeon for September.

[monstermansmum]

bump!!! anyone?

[anonandlikeit]

Have a look at this
www.scoliosissos.com/

I don't have any personal experience but have read articles in the local press.

[anonandlikeit]

Sorry that link doesn't work but just goggle, not sure if it is any use.

[Mitchell81]

Sorry no advice, but didn't know that anyone else on here DC had scoliosis. DD was diagnosed 4 years ago. It has got progessively worse, Orthopaedic surgeon have said that it is really bad. But because she can't walk and it isn't causing her any pain they won't operate as they will never be able to correct it as it is such major surgery they wouldn't risk it for her as she would've needed afew operations.

DD is now 8, nearly 9 and gets xrays every year. But in the last year has had repeated chest infections which they are now linking with the curving of her spine.

Hope you get some answers soon

[springlamb]

How old is your ds, mmm? (Sorry I should probably know.)
DS is 14 now and as well as his cp was born with a congenital scoliosis. It showed no movement until he was 10 and beginning to have growth spurts.
Our brilliant GOSH surgeon felt that he wanted to pin it at first sign of movement (this had been his view since ds was 10 months) so ds had a spinal fusion in 2005. We had a nasty couple of weeks. There's no other way of putting it and I'm sure you know what I mean - camping out in hospital, seeing ds in a bit of pain, all the chaos and madness of having a child in hospital.
However, once home he recovered amazingly quickly. Was walking before we left hospital, but quickly regained good previous mobility, back at school after 3 weeks, and was swimming and riding again within 4 months.
He has a titanium H-shape (about 3cms long) fusing the curve which means it should never move. The bone has regenerated to totally cover the metalwork and the scar is OK.
Hopefully your ds will not need surgery (and sorry I don't know very much about Angelman so don't know what other complications you may have) but thought our positive-y experience might take some fear out of what's probably your worst case scenario.
HTH.

[springlamb]

PheasantPlucker - am I right in thinking you are S.London?
Nordeen at GOSH is very good (although as you may know I am not a GOSH-fan).

[SkyrosSister]

Have any of you looked at Posturalcareskills.com ? The personal stories on there are amazing - our physio put me onto this as she was worried that dd was starting to show early signs of scoliosis. I have to say that I really don't like the idea of boxing her in at night especially as she is a terrible sleeper anyway, so I just try and straighten her out periodically through the night. It's a bit half-arsed so i am thinking of going all the way and firmly positioning her. The theory makes sense to me that she spends so many hours of the day in bed that she shouldn't be left in a poor posture, but it's just the practicality of it that worries me. On the other hand if it means she will avoid surgery in future then it's worth it.

Does anyone else know about this?

[PheasantPlucker]

SpringLamb, yes we are S London, mainly under George's. (Do we know each other???? That would be nice!!)

We have been told to wait now until growth spurts in puberty for possible surgery, but will start to see the orthpaedic surgeon this year. DD has CP and doesn't walk much, except short distances in boots and splints.

[monstermansmum]

Springlamb, hes nearly 8. He started walking at 3.5 which is quite early for AS. Going to see consultant today so will post back later.

Thanks for the replies.

[springlamb]

MMM, how did you get on?

PP, I only know the elbow consultant at George's (but she's very nice). George's is about the only hospital in the South East that ds hasn't visited in his time!

No, we don't know each other (yet).

BTW, ds hasn't had elbow surgery even though the CP has caused them both to dislocate. But he has had some tendon transfers in his hand to improve function which was quite exciting.

[monstermansmum]

Saw the consulatnt in school but he didnt have access to a computer in the room we were using and as he was in surgery on the previous days he hasnt looked at the x ray yet!!!!! He did say that he could see the curve but obviously couldnt compare it. I'll have to wait untill he gets time to view thex-ray and get back to me. Ds is so tired at the moment. He has an ear infection yet again but there seems to be something else underlying. He is falling asleep on the bus from school and today he fell asleep in the car-he hasnt done that since he was about 3!! Not sure if he's unwell or whether walking is making him more tired than usual. I'll post back when I find something out, even if its not very interesting!!!

[springlamb]

Ah well, shall I say no news is good news....

If his walking pattern is changing, this could well be making him more tired. Although ds's pattern wasn't affected by his scoliosis, his left hip is degenerating and this has made the manner of his walking different. He definitely doesn't have the stamina he used to and can't manage the same distances. He's tiring more easily.

Good luck when you do get to discuss the xrays.