Botox Treatments for CP Patients

[rangermom]

My DS (4) has an appointment with a neurosurgeon early next month to get an intial evaluation for botox treatments on his legs. The procedure is being recommended by his orthopedic surgeon. Does anyone have experience with this procedure?

 

[mdvlprof]

Botox is supposed to be used to help with muscle problems, not to help with wrinkles. It's a good non-surgical method.

DS had Botox in hands and neck. Botox worked great. Unfortunately, he developed a resistance to it, and had to have surgery on hands. Neck problem seems resolved.

 

[rangermom]

Thanks! We are trying to avoid surgery. How old was your son when he got it done? How did he handle the shots? His orthopedic is recommending shots in several places. He has tight achilles tendons and hamstrings.

 

[SueM in MN]

My youngest DD has had Botox 5 or 6 times. She’s had it in for tight hamstrings and also in her pelvic floor. She did have conscious sedation for it (where they sedate you, but you are still awake). She also had some relaxing music playing on her iPod. She did very well and the Botox was effective.

If you are given stretching exercises to do after, it’s important to keep doing them. The Botox will wear off after a while, so taking advantage of it when it’s most effective will help to get better final outcome.

I also work in a hospital that does rehab and many patients have gotten it. For some, it doesn’t work really well. But, for others, it’s really effective and can help avoid surgery.

 

[disneyobessed]

My son who is 10 also had this done about 4x starting around the age 4. It worked great for about 6-8 mos then would wear off. He eventually needed the hamstring/ hip adductor surgery in 2007.

 

[kstugan]

My son who is 7 has had botox about 6 or 7 times since he was 2 1/2. It worked really well when he was younger. The first couple times it lasted close to a year each time. He first only needed it in his calves, but as he has gotten older, he has had his hamstrings and adductors done. It usually takes close to a week to see the best results and he has a little trouble with being too lose for a few weeks until those weak muscles get built back up.
Now, it will work really well for about 3 to 6 months depending on much we stretch him and how active he is.
When they are doing the shots, they are painful. We have never put him under because of the risk and how quick a procedure it is. Last time he was
stuck about 10 times I believe. It is hard to watch, but I won't let him go through it without me in there. His physiatrist has a service dog that she has used in the past that really helped calm him.
We feel that the botox is a better option at this time than the orthopedic surgeries that he would need otherwise. He will need surgeries in the future, but we are hoping to delay them as long as possible.
Good luck with the botox.

 

[disneyobessed]

My son who is 7 has had botox about 6 or 7 times since he was 2 1/2. It worked really well when he was younger. The first couple times it lasted close to a year each time. He first only needed it in his calves, but as he has gotten older, he has had his hamstrings and adductors done. It usually takes close to a week to see the best results and he has a little trouble with being too lose for a few weeks until those weak muscles get built back up.
Now, it will work really well for about 3 to 6 months depending on much we stretch him and how active he is.
When they are doing the shots, they are painful. We have never put him under because of the risk and how quick a procedure it is. Last time he was
stuck about 10 times I believe. It is hard to watch, but I won't let him go through it without me in there. His physiatrist has a service dog that she has used in the past that really helped calm him.
We feel that the botox is a better option at this time than the orthopedic surgeries that he would need otherwise. He will need surgeries in the future, but we are hoping to delay them as long as possible.
Good luck with the botox.

I agree, it is very difficult to watch then inject the kids... my son was given a shot sedative that made him relax almost like a strong valume.. He went to Tufts New England Hospital /Boston Childrens Floating Hospital and was under the care of a physiatrist who was the first to use Botox in CP patients...As for the drug they gave him..i cant think of what it was... but it made him really groggy and loopy for a few hours but he was never knocked out. Good luck in the future with your childs procedures. Never ending...

 

[SueM in MN]

My son who is 10 also had this done about 4x starting around the age 4. It worked great for about 6-8 mos then would wear off. He eventually needed the hamstring/ hip adductor surgery in 2007.

Yes, I forgot to mention that it wears off. Hard to predict exactly when it will wear off because it seems to be different with different people and places it is injected.
My DD is getting another dose in December.

I agree, it is very difficult to watch then inject the kids... my son was given a shot sedative that made him relax almost like a strong valume.. He went to Tufts New England Hospital /Boston Childrens Floating Hospital and was under the care of a physiatrist who was the first to use Botox in CP patients...As for the drug they gave him..i cant think of what it was... but it made him really groggy and loopy for a few hours but he was never knocked out. Good luck in the future with your childs procedures. Never ending...

My DD was never out, but was groggy during the procedure. They have a nurse anesthesist present the whole who is monitoring DD and making sure she stays awake, but sedated. DD does very well with it.

 

[rangermom]

DS had the procedure last month. Seems to be working. Had his check up today and they prescribed a dynasplint. Now waiting for insurance to approve. He will be getting another Botox treatment in Jan.

Thanks for sharing yor experiences.

 

[KPeveler]

My sister has had botox in her face several times - A few years ago she had Bells Palsy which completely severed the nerve in her face. It did not heal properly (as can happen with nerve injuries) and her face is "frozen" all the time. Basically she has permanently spastic muscles in her face - OW! She said the botox has helped with the pain that comes from the spastic muscles...

I am thinking about asking for it for my neck/shoulder - nerve blocks did not work since they hit the motor function and I lost movement/control for two days - actually ended up doing damage! I am hoping Botox will help calm the spasms enough to help reduce the pain and get me off some of these meds!