Welcome Mina and Tor
Hello Mina and Tor,
I’m sorry that you’re going through this, but how wonderful that it was caught at such a young age. Going through all the testing and waiting is the worst! My son had his first x-ray at age 11 months now he’s 28 months and is finally done with 90 percent of the preliminary testing. He will have his first surgery (for a tetherdcord and a syrinx) next month. You can see a mini list of his anomalies in my signature.
I to researched casting and vepter. In trying to determine which one you should learn more about you would need to know is the infantile scoliosis idiopathic (no known cause) or congenital (vertebrae anomalies such as fusions or malformations)
Casting seems to only help idiopathic but has a very good reputation for these kids. Congenital is often just watched until (if) surgery is determined to be necessary. There are so many surgical possibilities I really can’t begin to guess which one may one day be right for you. I do know that Vepter is considered a last resort and not a first choice for most kids.
Shortly after I found this list I joined two yahoo chat groups that have been invaluable to me over the past year I strongly suggest you join the one that seems right for you or both as some of us have.
http://health.groups.yahoo.com/group...guid=136818165
First link is for congenital; the second link is for idiopathic / casting.
http://health.groups.yahoo.com/group...guid=136818165
I hope you have an easier year ahead of you.
Best wishes,
Tiffany
Mama to 5 beautiful redheaded boys
http://babyhomepages.net/5smurfyboys/index.php
Rory age 13, Evin age 9, Brandel age 5, identical twins Keegan and Conley age 2. Keegan has progressive congenital scoliosis at 54° a hemi vertebra, two fused ribs, several vertebrae fusions, a missing right kidney and a syrinx causing lower limb nerve damage that will require surgery at the end of summer 2006
Hello Mina and Tor,
I’m sorry that you’re going through this, but how wonderful that it was caught at such a young age. Going through all the testing and waiting is the worst! My son had his first x-ray at age 11 months now he’s 28 months and is finally done with 90 percent of the preliminary testing. He will have his first surgery (for a tetherdcord and a syrinx) next month. You can see a mini list of his anomalies in my signature.
I to researched casting and vepter. In trying to determine which one you should learn more about you would need to know is the infantile scoliosis idiopathic (no known cause) or congenital (vertebrae anomalies such as fusions or malformations)
Casting seems to only help idiopathic but has a very good reputation for these kids. Congenital is often just watched until (if) surgery is determined to be necessary. There are so many surgical possibilities I really can’t begin to guess which one may one day be right for you. I do know that Vepter is considered a last resort and not a first choice for most kids.
Shortly after I found this list I joined two yahoo chat groups that have been invaluable to me over the past year I strongly suggest you join the one that seems right for you or both as some of us have.
http://health.groups.yahoo.com/group...guid=136818165
First link is for congenital; the second link is for idiopathic / casting.
http://health.groups.yahoo.com/group...guid=136818165
I hope you have an easier year ahead of you.
Best wishes,
Tiffany
Mama to 5 beautiful redheaded boys
http://babyhomepages.net/5smurfyboys/index.php
Rory age 13, Evin age 9, Brandel age 5, identical twins Keegan and Conley age 2. Keegan has progressive congenital scoliosis at 54° a hemi vertebra, two fused ribs, several vertebrae fusions, a missing right kidney and a syrinx causing lower limb nerve damage that will require surgery at the end of summer 2006
Comment