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  #61  
Old 04-02-2014, 10:05 AM
Outkast1972 Outkast1972 is offline
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Thanks for that. Yeah she is a great little kid and rarely complains about her cast. The only time she complained was when it was first put on, she asked to take it off a few times and that was it. I explained it can't come off and she never asked again. I was amazed she accepted it so well.

She just got her cast replaced last week and the new one seems to be longer then the last one and digs into her legs when she sits. She got upset on the car ride home but that was it.

Funnily enough we had far more problems with her brace. We had a lot of trouble initially keeping it on her for more then 20 minutes! How do you explain to a 2yo she has to wear it 23 hours a day! We did build it up to 5-6 hours but that was only in the last 6 months. I guess when they know the brace/cast can be removed they will want to remove it. If it can't be removed they just accept it and get on with it!

We go back in 2 weeks to see the spinal unit Doctors about how things are going. Hopefully we will see some improvment after wearing the cast 24 hours a day for the last 8-9 weeks. I know she is an inch taller wearing it so it definately keeps her straighter!
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  #62  
Old 21-02-2014, 08:49 PM
thewondersmith thewondersmith is offline
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Hi guys! Long-time lurker, first time poster here. My name is Kas and I'm 23; diagnosed at 12, wore a brace until I was sixteen (which unfortunately didn't really do much to slow the degradation of my lumbar and thoracic curves) and am hoping to finally go in for surgery at some point this year. I'm so glad to have found this forum- it's been great being able to read everyone's stories and see the support everyone has here!
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  #63  
Old 03-03-2014, 06:18 AM
Gsmum Gsmum is offline
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Hi Kaz

I'm new here as well. Mum to 7yr DD just starting our scoliosis journey. Lets hope we both make new friends here and can share on their journeys and wisdom.

Cheers
Vik
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  #64  
Old 01-04-2014, 06:49 PM
pyrzxl pyrzxl is offline
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Hey i'm 28 and live on the sunshine coast... I got diagnosed at 11, had surgery to correct syrinx and spinal nerve tethering at 13, anterior fusion L1-L5 at 15 (2001). My doctor told me to come back "when i can't walk", i have regular migraines and chronic back pain. It was hard as a teenager but i'm a lot better at dealing with things now. Great to find this forum I've never talked to anyone else with the same condition
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  #65  
Old 02-04-2014, 07:47 PM
MissJen MissJen is offline
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Reading about kids going into casts, reminds me of my childhood.... although back when I was first diagnosed (in the 80's) they were doing casting on children for scoliosis (as far as I understand)....I was put in a brace, and my straps were always at the back... anyway

Hi, Im from WA.... I don't actually remember a life before scoliosis, as I was diagnosed so young... by chance I was diagnosed by my GP as a 15 month old, and by 18 months I was put in my first brace.... For 23 out of 24 hours a day I wore the brace, full time up until the age of 7/8.... then again from ages 11 to 13 until my spinal fusion from T2 to T11, where they managed to hold the curve, but got a very poor correction ...... To be honest it wasn't until I was an older child that I begun to realise that wearing a brace was not 'normal' (as a young child I thought it completley normal to wear a brace).. and that I had a massive hump on one side (I think I noticed it more as an older child because trying to get things like bras and singlet tops to fit was impossible)..

So here we are 2014... for many years I pushed the limits when it came to what my back could do/handle... While I didn't regret it, probably wasn't the smartest move. These days I still have a damaged right shoulder (from the last back brace.. you would have to see it to understand why) which there isn't a lot they can do to help it ...... and I have a lot of pain and discomfort in my lower back, hips, butt and up and down the spine as the years have increased ..... I don't dwell on it really, yes it hurts but, really it could be a lot worse :-) , and I just get on with it.... That is all xx
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  #66  
Old 04-04-2014, 09:23 PM
Rodverta Braefusion Rodverta Braefusion is offline
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Welcome to the forum Miss Jen. I hope you find it to be a friendly and informative site to help you in your scoliosis journey.
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  #67  
Old 02-05-2014, 01:49 PM
Outkast1972 Outkast1972 is offline
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Quote:
Originally Posted by Outkast1972 View Post
Hello all. I am the Dad of a 3yo with severe scoliosis. I started noticing her left rhomboid muscle was bulging out when she was about 6 months old. No one else in the family thought it was anything to worry about except me. I even mentioned it to the family Dr who said it will even out when she starts crawling. Then it become it will even out when she starts walking. Then at about 1yo he said her spine is curved. We where sent to the a hospital spinal unit and they monitored it for awhile. Then she was made a brace at 2yo. Now she is in a full body cast as her last check up showed her spine check up showed her spine had gone from 65 to 90 in a year.

We had a lot of trouble keeping her in the brace as she hated it and as she got older could take it off herself. We would often find it laying around the house and her Kindy teachers told us they would find it laying around the playground! We could only keep it on her for 5-6 hours on a good day so I guess that is why it wasn't working. So it is easier having her in the body cast, we don't have to battle to keep it on her at least. But the poor kid misses out on swimming/pool activities as well as baths/showers.

I found this site and thought I would join up to talk with others in the same situation.

Thanks,

C
Hello everybody

I thought I would give an update on my little girl. We had an update at the hospital today. She is now on her 3rd cast and her curve has gone from 99 to 75 on the X-ray 8 weeks or so after the first cast. And today it was 64 from the X-ray done at the change of the second cast. They didn't do an X-ray on the 3rd cast or today so I don't have a current angle but it should be even lower then that as the 64 was from her X-ray from about 10 weeks ago now.
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  #68  
Old 04-05-2014, 09:03 PM
Eliz Eliz is offline
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That sounds like great news, hope you are all coping ok! Liz
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  #69  
Old 18-06-2014, 06:44 PM
Bruna Bruna is offline
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Join Date: Jun 2014
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Hi my name is Bruna and my 5 1/2 year old son has just been diagnosed with scoliosis. I don't know anything about it and saw a new paediatrician today and am overwhelmed with everything.

Hoping to speak to others.
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  #70  
Old 19-06-2014, 07:32 PM
jane jane is offline
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Hi bruna, welcome to the forums,though I wish you did not have to be here. there are a few people who contribute to the forum who have very young children like your son who have been diagnosed with scoliosis. for each mother and father there is a different journey through this surprisingly common medical problem. my daughter had her spinal fusion at 15 and that is nearly two years ago. she recovered quickly and doesn't even think about it really. her life is no different now to before the scoliosis diagnosis aPart from her massive scar. Hope you get some good help from so e of the awesome surgeons Nd specialists out there. The people on this forum will support you al the way. they are awesome.
Regards,
jane
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