I am new to these boards. Hope I can be of help. My 11 1/2 year old daughter has congenital scoliosis, as well as many other problems. Her degree is 70, but they can't do surgery, because she is so weak. Her doctors have even talked about this. This is why I replied. Have any of you been to your local Easter Seals to see the doctor they have on staff? She has been followed by Dr. Ellen Kitts since birth. She is a physiatrist (in that she is a pediatrician and a physical therapist. ) If you have such a doctor locally, they could probably keep an eye on your scoliosis, and see if it is compressing the lungs or such. Thought I might be of help.

Thank you Bonnie Jo for your info. I had not heard of this. How is your daughter? Is her scoliosis compressing her lungs?

I am searching for more info...I have a 11mon. old son with congenital scolosis with gross motor developmental delays. We have been seeking answers to many questions...he has several problems in his spine including hemivertebrae, spinal bifida occulta, and several curves at the lumbar-thorasic-and cervical areas, fused ribs and vertebrae. We know he is bound for surgery but have so many unanswered questions...I want to find a great Dr. to take him to. We took him to Shriners and they wanted to brace him to see if they could keep the curve under control...the other Dr. we saw said a brace would never work. I am worried about nerve problems, cord problems, etc. Any info. would be helpful. I can't seem to find the support I need.

Hi everone, I have a 17 month daughter who was just diagnosed with klippel-feil syndrome and the have suggested surgery. my daughter has full range of motion. we are in New york, does anyone have any suggestions on who to see, what to ask please i'm desperate,

:confused: I don't think he has. I hope not. Wonderful man!! Anybody know for sure what he's up to?

He was my Dr. too, I think he died, I'm sorry to tell you. I'm not for sure on that. I'm 25 now and I was 7 when he did mine. It's nice to meet you, though.