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Sanjay
06-08-2005, 07:39 AM
Hello Everyone,

This is my first message and introduction mail for this forum. Myself is Sanjay Malik and i belong to India. My son who is now 11 months, was born with scoliosis and couple of other bony deformaties.

It was noticed at the time of his birth that he does not appear to be a normal baby, there were some bony deformities visually apparent e.g. CTEV on the right / left feet and extra digit with left little finger (which was removed on 2nd day). He had weak thumb in left hand.

There was bend in the spine hence the doctors took an X-ray and did the ultrasound just to avoid any other deformity.
It was analyzed in ultrasound that the child has crossed fused kidneys on left side. on further investigation, it was found that both are working and nothing to be done for it.

After analyzing the X-Ray, they found out multiple hemi vertebras in spine in cervical, thoracic and lumber regions. with curve bending upto 55 degrees. the second X-ray (when he was 6 months old) showed little improvement and the curve reduced to 34 degree. Now it seems that it is increasing again as the he now started to sit by himself ( he is due for another x-ray in july)

Right now, we are visiting an orthopedic consultant and POP cast was applied was almost 7 months, then the surgery of the right feet is done just 2 weeks ago under supervision of this consultant. The surgery for the left feet is due in next 2 weeks time.

I leant from some web information that exercise could help, so if someone can please let me know, if they had similar case? what they did and what did helped them most?

lastly, if someone can suggest me any clinic / hospital / doctor specialized in scoliosis in INDIA.

Regards,


Sanjay Malik

Carmell
06-08-2005, 12:44 PM
Hi Sanjay and Welcome!

Your little one sounds very similar to my son, Braydon. Did they give you a classification for his several structural birth defects? My son is a VACTERL Association patient and has similar issues as your son.

The POP casting is a great option for children who have idiopathic scoliosis. It is not routinely used for congenital malformations. I hope it helps you buy some time before surgery will be required. The best surgical option (if he qualifies) would be to place support rods in his back and chest to give his body time to grow. These rods are surgically expanded as the child grows. The procedure allows natural growth of the spine because there is no fusion of the bone material. There are several hospitals in the world doing this surgery now. It was created/perfected by a team of doctors in San Antonio Texas. You can read about the procedure and find locations of hospitals at this website: http://www.veptr.com

I'd be happy to share our experiences with you. My son has "multiple hemivertebrae with contralateral failure of segmentation". At birth, his congenital curve measured 45 degrees. By age 9 months, the curve was 75 degrees. He had anterior/posterior fusion at age 11 months. At age 6years he had VEPTR implant surgery. Today he is 10years old and doing very well!

My email address is boulderfam@hotmail.com if you are interested in sharing experiences.

My best to you.