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Old 01-22-2011, 10:12 AM   #1
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Jordanmom HB User
just found out my 9 year old son has congenital scoliosis

Has anyone had a similar experience with their child? I am having a difficult time understanding how I could have overlooked this scoliosis since he was born with it. He has congenital upper cervical scoliosis and an upper thoracic curve. I just realized something was wrong when the curve of his neck started to get strange last fall. Doctors are saying bracing will not work. I just need to watch it to see if it gets to intervention level?? They have not told me the degree of the curve. Is there something else I should be doing than just waiting? He cannot turn his neck left due to a kind of congenital fusion and curve at his neck. He also has a leg length difference of 2cm. We have had an MRI done and it revealed strange bone structures in the spine (wedging) but no hemivertebrae. I am starting to think he has klipel-Trenaunay syndrome from the web search I have done. If anyone has a similar experience I would very much appreciate the thoughts as I am extremely worried about him.

Last edited by Jordanmom; 01-22-2011 at 10:15 AM. Reason: spelling

 
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Old 02-02-2011, 04:04 PM   #2
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Re: just found out my 9 year old son has congential scoliosis

Hi. I have scoliosis and although I haven't had surgery yet, I do have a general notion of the complications... evidently. Haha. If his legs are uneven, it is probably scoliosis. From my knowledge, you should be informed of the size of the curve. It is very important to know the severity at such a young age. The best thing you can do for your son is monitor his posture, try to make it the best as possible, as well as make sure he get's enough exercise, especially developing back muscles. I do believe if you are born with it, it does have a higher potential of getting rather serious, but as for now just monitor it and wait for a higher power to make the decision.

 
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Old 10-06-2011, 09:01 AM   #3
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Re: just found out my 9 year old son has congenital scoliosis

My son also was recently diagnosed with congenital scoliosis. Unless the curve is great enough they will just watch and wait. If the curve progresses rapidly or is severe, the only option is surgery. They cannot brace this kind of scoliosis. You need to find out the degree of curvature. Also, depending on where you live--get a second opinion.
Good luck.
andrewsmom

 
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Old 10-13-2011, 07:56 PM   #4
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Jordanmom HB User
Re: just found out my 9 year old son has congenital scoliosis

Quote:
Originally Posted by andrewsmom View Post
My son also was recently diagnosed with congenital scoliosis. Unless the curve is great enough they will just watch and wait. If the curve progresses rapidly or is severe, the only option is surgery. They cannot brace this kind of scoliosis. You need to find out the degree of curvature. Also, depending on where you live--get a second opinion.
Good luck.
andrewsmom
thanks for posting your experience. There are not too many kids with cervical scoliosis. I have been to some top hospitals here in Connecticut and Shrinners for a 2nd opinion and still they say " wait" . It is very difficult not to know what will happen and just watch.

 
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Old 11-10-2011, 08:07 PM   #5
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Re: just found out my 9 year old son has congenital scoliosis

Quote:
Originally Posted by Jordanmom View Post
Has anyone had a similar experience with their child? I am having a difficult time understanding how I could have overlooked this scoliosis since he was born with it. He has congenital upper cervical scoliosis and an upper thoracic curve. I just realized something was wrong when the curve of his neck started to get strange last fall. Doctors are saying bracing will not work. I just need to watch it to see if it gets to intervention level?? They have not told me the degree of the curve. Is there something else I should be doing than just waiting? He cannot turn his neck left due to a kind of congenital fusion and curve at his neck. He also has a leg length difference of 2cm. We have had an MRI done and it revealed strange bone structures in the spine (wedging) but no hemivertebrae. I am starting to think he has klipel-Trenaunay syndrome from the web search I have done. If anyone has a similar experience I would very much appreciate the thoughts as I am extremely worried about him.
The cutting edge is now the Magnetic Rod, it can be used on young children. The rod is emplanted and inspite of being anything but a fully grown person one intervention is enough in a child. The rod is put in place surgically and then is then slowly staightened by using magnets at home, presumably on a regular basis. The outcomes seem really good and certainly less barbarick. Check it out and let us know what you think.
James

 
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Old 01-30-2013, 04:52 AM   #6
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Cajundol53 HB User
Re: just found out my 9 year old son has congenital scoliosis

Quote:
Originally Posted by Jordanmom View Post
Has anyone had a similar experience with their child? I am having a difficult time understanding how I could have overlooked this scoliosis since he was born with it. He has congenital upper cervical scoliosis and an upper thoracic curve. I just realized something was wrong when the curve of his neck started to get strange last fall. Doctors are saying bracing will not work. I just need to watch it to see if it gets to intervention level?? They have not told me the degree of the curve. Is there something else I should be doing than just waiting? He cannot turn his neck left due to a kind of congenital fusion and curve at his neck. He also has a leg length difference of 2cm. We have had an MRI done and it revealed strange bone structures in the spine (wedging) but no hemivertebrae. I am starting to think he has klipel-Trenaunay syndrome from the web search I have done. If anyone has a similar experience I would very much appreciate the thoughts as I am extremely worried about him.
Hello, my ex husband, my daughter and my 2 granddaughters all have nuromuscular dystrophy with scoliosis. When my daughter was 9 she had the steel rods placed and her spine fused, (1980's). Now they offer the temporary adjustable rods. These allow the child to continue to grow with less risk of the curve progressing. The first form of treatment offered them was the thoracic brace. This was not successful for my daughter or my oldest granddaughter who is now 9 and has the temp rods. She had the rods adjusted every six months until the doctor says she has grown as much as she is going to. At that point they place the permanent rods and fuse the spine. We are now scheduled for her final surgery. My youngest granddaughter who is 6 is now wearing the brace and has been very receptive to the treatment, which is key due to the brace must be worn for 14-16 hrs a day. If you need to know anything else please ask, I hope this has helped in some way. I would also like to mention they see an amazing doctor at the Iowa City Hospital in Iowa city Iowa. His name is Dr. Weinstien and is in the orthopedics dept. He did my daughters surgery 21 yrs ago and also my grandaughters surgery and is a teacher of his skills as well.

 
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