Discussions that mention botox

Cerebral Palsy board


[QUOTE=patdom05;3418505]This is my first time posting on a message board and I am really hoping that I can get some advice. My 2 1/2 year old son has CP and is getting ready to see an ortho. surgeon. He currently walks with a walker, cruises on furniture and walls, and crawls. He still likes to spend a lot of time on the floor playing with his twin brother. Unfortunately, he also spends too much time w-sitting. I have been recommended both AFO and SMO braces for him. Has anyone had any experience with these? I am concerned that the AFO braces will make his w-sitting worse.

Also--I am very concerned about my son using oral baclofen. I was warned that it might have long term affects on his intellectual/and/or social development. Has anyone had any experience with this?

Thank you for any help or suggestions. I really appreciate it.

Welcome aboard....I have 3 year old twins. One has CP, and the other one doesn't. The younger twin has CP diplegia. He started wearing AFO's when he was 19 months old. He wasn't diagnosed with CP until he was 2 years old. He didn't really start walking independently until he was 3 years old. He got a gait trainer when he was 2 years old, but never really used it. It was too heavy for him to walk in. I got him an aluminum open front walker when he was about 2 years 8 months old. He started walking really good with it. He is now walking independently , but it took alot of hard work. I do alot of therapy at home with him.

Your child will still manage to do the W sitting even wearing AFO's. That is the most comfortable position, and also the worst for the child. I would suggest to have your child sit on a 6 inch footstool. I bought mine at a thriftstore. My son has not gotten any oral baclofen, but has received botox quite a few times now. It has helped him tremendously. I would strongly recommend that. It hasn't been easy with my twin. The older twin can do everything that a typical 3 year old can do. It has helped the younger twin because it stimulates him, and he wants to keep up with him. He couldn't ask for a better therapist.

Let me know if you I could help you in any other way. I know that it hasn't been easy, but things do get better. They said that he wouldn't walk until he is 4, and he beat that by a year. One never knows how to predict milestones. As long as your child progresses(even small, small milestones), that is the important thing. We are truly blessed.
I would like to thank everyone for your helpful replies. It helps so much to know that their are other families going through the same thing. Just like many of you, I have been trying to battle the w-sitting anyway that I can. My son has small chairs that he likes to sit in--our favorites are the cube chairs because they are so stable.

My son did go visit the dr again and he is scheduled to get his second set of botox injections this week. This time they are going to cast both of his legs. I am nervous about that, but I know that it will only be short term and I have heard that it extends the time between botox injections. They also decided to get him both AFO's and SMO's (for short periods of time). We are going to try out both, but they feel that he will need the AFO's more. Thank you for the advice on the shoes. I am trying to find good pairs for him...I'll look into the Hatchbacks.

My son is currently walking with an open front Kaye walker, but we have been looking into getting a balance dog for him when he gets a little older. Has anyone had any experience with these dogs? I am really hoping that this will be an option for him to help when he gets to be school age.
[QUOTE=patdom05;3424795]I would like to thank everyone for your helpful replies. It helps so much to know that their are other families going through the same thing. Just like many of you, I have been trying to battle the w-sitting anyway that I can. My son has small chairs that he likes to sit in--our favorites are the cube chairs because they are so stable.

My son did go visit the dr again and he is scheduled to get his second set of botox injections this week. This time they are going to cast both of his legs. I am nervous about that, but I know that it will only be short term and I have heard that it extends the time between botox injections. They also decided to get him both AFO's and SMO's (for short periods of time). We are going to try out both, but they feel that he will need the AFO's more. Thank you for the advice on the shoes. I am trying to find good pairs for him...I'll look into the Hatchbacks.

My son is currently walking with an open front Kaye walker, but we have been looking into getting a balance dog for him when he gets a little older. Has anyone had any experience with these dogs? I am really hoping that this will be an option for him to help when he gets to be school age.

How old is your son? Mine is 3 years 8 months old. He will have botox on Wednesday(his will be his 6th time). He gets the injections in his hamstrings and calves. He also started on baclofen 10 MG 1/2 tablet in the a.m. and 1 before bedtime.