Concerns about an upcoming surgery

[Brianna's_Mom]

My daughter is scheduled for surgery. We waited even though her diagnosis was showing that she needed the surgery a couple of years ago with an S curve slightly under 50 Degrees on both upper and lower areas of her back. Our doctor in Philadelphia didn't recommend bracing. She's now going to turn 15 before the surgery date with a 58 degree curve upper and greater then 50 lower. We tried Spinecore to no avail. Since she has down syndrome, her new doctor alerted us to the fact that her bones contain more collagen in them. I'm not sure if that effects the fusion. She's having the surgery at Nemours in Wilmington DE. Any information, advice would be appreciated as to the hospital, (surgeons there if anyone is familiar with this orthopedic center), kids with downs and scoliosis or the procedure and care that needs to be followed. This has been a journey for us and now that we are at the point where we made the decision to get her scoliosis taken care of, we have a lot of concerns that a surgery places upon us. It has been unbelievably helpful to us to utilize this universal "information highway" in order to view all of the bulletins out there concerning scoliosis. It's been a blessing.
Thank you.

[pmckive]

Hi,
My daughter, Katelyn, age 10, also has Down syndrome and scoliosis. I just discovered it the beginning of November of 2009, and we found out her degrees were already too high for bracing. She had a thoraic curve of 53 degrees and lumbar curve of 37 degrees. She had a posterior spinal fusion on January 12th and had T5-L3 fused. Her surgeon didn't mention the collagen, but he did say her being "more stretchy" probably caused it. He fused both curves because he believed the bottom curve would just get worse and she'd need surgery again. If she were a typical kid, he may have just used a brace for that curve.

She had surgery at Children's Hospital at Boston with Dr. Hedequist. The surgery went very smoothly, about 5 hours, but at least one hour is set up, I believe. We were so relieved when it was over. She was in the hospital for 6 days. She had to be able to walk around the hall and up 3 small stairs with the physical therapy, and sit in a chair. It's now been 2 weeks, and she's still on Oxycodone and she gets more pain, like in her shoulders because she is doing more activity. She will have homebound school starting next week.

I hope that helps. this board was and is very helpful. If you have any questions, I'd be happy to help.

Pauline and Katelyn

[Brianna's_Mom]

I wish her all the best on her recovery.

Thank you for sharing this with me. It's wonderful that your daughter is doing so well and I wish her all the best on her recovery. I believe that our doctor also meant that her limbs are much more flexible by referring to having more collagen in her system whether it be in the connective tissues surrounding the bones or wherever, I'm not quite sure. I'll have to address it at the next appointmnet. However, she's very loose-jointed, a symptom associated with the syndrome. I'm glad to hear that this didn't concern your surgeon and I'm regretting that I put off surgery. I wanted to see if it would stabilize which it didn't do. My daughter is very scared about getting an operation and has told me many times that she doesn't want it so this is making it all the harder for me. We definately decided to get the surgery. Thanks again and if I have more questions I'll try posting and if you want to update me with anything please do. Again, best wishes on a speedy recovery for your daughter!

[ArabianFancy]

Mandy does not have Down's Syndrome but is 11 ( almost 12) and did have surgery 2 weeks ago. ( T5-L3 fusion and rods ) She went back to school for 3 hours YESTERDAY! She felt like it and the Dr said ok as long as I was ok with it. She is at a small private academy and not likely to get bumped into etc. She was quite tired today but thinks she can handle a few hours tomorrow.
She is down to almost no pain meds of any kind.
Maybe her story will help your daughter!
Gina

[Brianna's_Mom]

Thank you for your post.

Way to go Mandy! Keep up the good work at school and stay healthy!! Thank you for your post. I saw your posts from earlier on and it has been extremely helpful to read your thoughts both pre and post surgery and to know that she's recovering so well. Best Wishes to Mandy from Brianna.

[ArabianFancy]

You or your daughter are welcome to email me arabianfancy@live.com or Mandy, smileygirl5445@live.com if you want too. I know Mandy would be glad to talk with her about her experience. She was back to school today for 3 hours and is resting now but feeling pretty good considering it's a very NASTY day here in the 'Sunny' South....
Gina

[Brianna's_Mom]

Praying for better weather for all...I heard about the nasty conditions there in the southern region of the country. I hope it's made it's way out of there! Unfortunately, Brianna didn't get a chance this past weekend to read the posts and I will most certainly get her reading them this week. Thank you so much for your emails. I'll see what I can do and maybe I can encourage her to type something. She's a pretty good speller I guess. She had 2 special olympics games going on this past weekend in basketball and bowling. Hopefully the upcoming surgery won't slow her down regarding her sports activities. Hope Mandy's feeling more like herself each and every day.