HI! I am hopeful that somebody on these boards can give us some information about anyone they have known who had scoliosis so severe they required surgery. We just got the news about our son, age 16, that he has a 78 degree curve and if he doesn't have surgery, he will eventaully not be able to breathe. We have known about the scoliosis for some time, but it recently progressed quite fast. The problems are:
1.he had opean heart surgery at age 8 months and we don't know if he can even be approved for surgery
2. the pediatric orthopedic clinic in our children's hospital has never done the surgery on anybody with Down syndrome.
3. We knew in advance that for some reason this is a rare condition in kids with DS, so how to we find somebody who might be more informed?
4. Anybody had any experience with the Shriners Hospitals?

Thanks for any help in advance!

I posted to you on the General Discussion board and just want to make sure that you read that. I think you can email me direct from this website personally if you want to. If not I will leave my email address for you later. Where are you located at? I would definitely find someone with lots of experience and preferably someone who has done this surgery on someone with Down syndrome. I have to get to work, but I will check back later.

For now - hang in there best you can!

Lisa

http://photobucket.com/albums/v442/LisaLisa627/

Hi Barb!
I posted about your situation to a few groups I belong to and would love to send you the info.

Email me when you can at lisahuckleberry@hotmail.com

Hope all is well!

Lisa

http://photobucket.com/albums/v442/LisaLisa627/

Hi, We are new to this forum and actually googled scoliosis and Down Syndrome because we, too, just received a recommendation from 2 doctors that our 12 year old daughter with DS needs surgery. We, like you, are doing the best we can to find the finest Doctors but so far no one in our metro area hospitals has operated on a child with DS. We are obviously concerned and would welcome an opportunity to share information with someone else in our situation. We can help eachother with what we find as we are still getting other opinions about the least invasive procedure with the least complications etc.....Does anyone out there know of a hospital that perhaps specializes in this surgery for children with Down Syndrome????? We are outside of Detroit, Michigan but will go anywhere. Also, we are looking into the Shriners and will keep you posted...

HI!

Just saw your post on the message board and am excited that I can actually give somebody some advice on this subject. We originally went to Children's Hospital in Buffalo, NY and scheduled the surgery ... we felt we had no choice. The doctor there was willing to do it and had experience, but had never done it on someone with Down Syndrome. right after that we were contacted by Shriner's as we had applied to be seen there for a 2nd opinion at the Shriner's Hospital in Erie, Pa. We had our first appt. there last July. We decided to go with Shriner's as that doctor did the sergery once a week, although he too had not ever done it on someone with Down syndrome before. Kurt had his surgery almost a year ago ... October 2006 and we are sure glad we decided to do it and go through Shriner's. His curve had progressed to over 90 degrees right before the surgery. Please feel free to email me and I will give you more details, but right now I will recommed that you follow through will calling Shriner's and trying to get an appointment, if nothing else but for a 2nd opinion. I am not sure where the closest one to Detroit is, but it might even be Erie, Pa also. I know they take a lot of Canadian patients and a friend of a friend who lived in Tennessee took their daughter there. Got to run!

My email is: hoffman@wnynet.net
Barb