bsjones - I just read your update on Noah, and I am so glad to hear he is doing well following his surgery! Please keep us updated on his progress!

I remember that you mentioned that Noah had casts at one point. We went to UNC today, and Kaitlyn's orthopedist recommended that we do another round of botox (this time in her hamstrings, adductors, and heels) and at the same time start the serial casting process. I'm hoping you can answer a few questions about Noah's experience as we try to decide what we should do...

1. Did Noah have botox at the time he was casted?
2. How long was he in the casts, and how often were the casts changed?
3. Was he uncomfortable? I'm thinking that casts in the middle of summer may be hard for Kailtyn.
4. Was he able to get around okay with the casts? Kaitlyn can crawl and walk with her walker, and I'm wondering how she'll do that while in casts.
5. Did you see an immediate change in his flexibility after the casts were removed? Did the change last long-term?

Thanks for any help you can give! We are still thinking about the rhizotomy...we are undecided as to the best timing for her. One doctor feels now is the time, another feels as though we should wait until she's 3. We'll see!

Hi Kaitlynsmom.
Noah was casted only once when he was 2 1/2 years old. He was casted for 2 weeks and got to pick his color of casts. He picked neon orange, which is his favorite color, and he just loved them.
He got around quite well in his walker with them, but seemed to get a little tired out when he went down the block in them. We were only going to therapy once a week at that time and so he wasn't getting any therapy time, since the whole time was filled with casting. She took the casts off after a week and checked his feet. They seemed to be helping to stretch out his heel cord a lot; so she re-cast him after that first week. I asked her if we could come again that week; so she could actually spend therapy time with him in the casts. I'd heard that a lot of kids start walking while in their casts. We saw her again that week, and he took his first two steps there, right at the end of therapy. Then he began to practice walking back and forth to us at home. It was much easier for him to learn to walk in those casts, and I'm so glad he was in them.
We considered Botox for awhile, but my PT, who keeps up really well with research, said that they're finding that repetitive casting over time has the same effect as Botox and casting does.
Noah has never had Botox (we chose SDR instead--he had it when he was 3).
My PT said the more he could do before he got SDR, the better off he'd be after SDR, if that helps you think of any questions for the SDR folks.
We didn't have repetitive casting, and I'm not sure why she didn't do that for Noah. I will ask her.
I did see an immediate change after casting--it was amazing. His heels came closer to the floor than before. The change lasted, but I think it may not have, had we not kept up with stretching twice a day after that since he still had the tone issue.
My PT thought the casts would be too hot for summer, and that's why they waited until the fall. It was still hot then, but he just loved them because they were so cool. He only cried when they took them off (because he wanted to leave them on!).
They did cause his legs to itch some at night, from what I can remember.
Hope this helps--good luck on your decision!

Thanks bsjones. As always we found your information very helpful. It looks like Kaitlyn will most likely have the SDR sometime next spring. We are now deciding whether to do the Botox, casts, or both. I feel like we are definitely equipped to ask more questions now that you've told us about Noah's experience. Thanks again!