I need help with my 4 yr olds scoliosis

[jacki]

Hi

I'm new here. My little girl was dx with infantile scoliosis just around her 2nd birthday. Her curves were 17 thoracic and 23 lumber. By 3yrs old they were 30/35, and she started wearing the Boston TLSO, 23 hrs a day.

Now, she is 4 and a half. Her x-rays have been taken in the brace from May where her degree's were the same, then in Sept where there was a great improvement, 21/26. Then in December, we went again for the first x-ray out of the brace and her curves are back up to 26/38!

I think I read somewhere that 40 is a bad number to get too? Especially in a younger child? And I'm very scared for her.
We do see the top Pediatric Orthopedist here in Vancouver, Canada.

I've read alot about 'serial casting' and I'm thinking that would be a good thing? Now, I'm reading a little about the Titanium Rib Project. Is this done with big curves only? Is it instead of a fusion?


I hope there is someone out there to answer all my questions.
Thankyou all in advance.

Take care
Jacki

[Carmell]

Hi Jacki,

My son is a Titanium Rib patient. I'd be happy to share our experiences with you. He was born with severe congenital scoliosis and is doing well now.

From the description of your daughter's curves, it sounds like her spine is fairly flexible, which is a good thing. That may allow you to buy some time before intervention surgery will be needed.

Some of the things they look at when qualifying a child for the Titanium Rib Project (TRP) include whether or not the curve is affecting the lung function, if the spine is responding well to bracing - without causing reduction of bone mass, any other medical issues that would contribute to long term surgeries, etc. The #1 goal of the TRP is to increase or maintain lung function. Second to that is spine stabilization. Historically, the orthopedic community has not addressed potential lung function when dealing with scoliosis in infants and young children. I'm so glad they are changing their minds.

Feel free to email me at boulderfam@hotmail.com anytime.