My daughter was diagnosed with CP in Feb. After a long wait we finally got in to see the orthopedist. He recommended that she get AFO's (we pick them up tomorrow) and to see a specialist for botox injections. Has anyone had any experience with the botox? Is there a website to review the procedure with the pros and cons of having it done? I'm just not sure if it's a good idea to have it done or not. Thanks for your help.

I had botox when I was 12, in my hamstrings....it does definatley help to reduce spasticity so that the muscles can be stretched. The negatives would be the effects are only temporary, but being that your daughter is so young it may have more lasting effects if you keep using it along with therapy...and also it is pretty painful to have shots put into your muscles, but they would probably put your daughter to sleep (they made me suffer! :))

So all in all I would say it's worthwhile to consider... here is a website

http://news.bbc.co.uk/1/hi/health/2910111.stm

My son had botox several times before he finally had hamstring surgery at the age of 10. We always had good results with it, but you need to have intensive pt during the weeks when the botox is having its peak effect. Without botox, my son probably would have needed surgery long before he was 10. The botox let us wait until he was older to have the operation on the hamstrings.

HI,
I have had botox injections on my face for cosmetic reasons. I'm not sure what your daughters doctor is trying to accomplish with these injectios? I can expound further if this is of any assistance.

I definitely find it useful for muscle spasm - I've had injections for about 5 years now. (I don't have CP, but a related disorder, so the Botox+stretching doesn't work for me).

HTH
Swift

Threasa- Botox injections temporarily deaden spastic muscles so they can be stretched.

HI,
I have had botox injections on my face for cosmetic reasons. I'm not sure what your daughters doctor is trying to accomplish with these injectios? I can expound further if this is of any assistance.

The botox binds to the nerve endings, stopping some/all of the nerve impulses from the brain reaching the muscle.

By temporarily paralyzing spastic or tight muscles, the botox renders them more susceptible to stretching in therapy. The muscles resist the stretching much less and physical therapy can lead to some permanent lengthening of the taut muscles. The use of botox for therapy for people with spastic CP is a great benefit and in my opinion the most significant medical application of botox.

HI,
I have had botox injections on my face for cosmetic reasons. I'm not sure what your daughters doctor is trying to accomplish with these injectios? I can expound further if this is of any assistance.


If you don't know about Cerebral Palsy, one of the common symptoms is spasticity, which means the muscles send too many impulses that the brain is unable to "turn off"...which eventually makes the muscles tight. Drs. use botox to stop the impulses, and it makes stretching a lot easier.

I remember having botox a few years before it began to be used for cosmetics...and then it was all over the news, I felt important because I'd had it already ;)

Sorry if you didn't want to know all that info, but I like explaining it to people :)

My 19mo old has had two doses so far. The first time it worked well. The second it didn't work at all. He will be having it again in early Sept. His dose was too low the second time because he had a major growth spurt, so we(the doctor and I) are working that out now. Unfortunately he has become really tight much earlier than I expected him to. He is getting hard to change clothes and put in his carseat. Hopefully this next dose will work. He also was just started on Baclofren for pain and hopefully will also help with the tightness, but unfortunately he has low muscle tone in his torso, which the medicine can make worse. Nice to meet you.

Jennifer

Hi SBDBecca!

My son is two also and was diagnosed back in Dec. He had his first round of Botox in June, a few weeks before he turned two. We had it done at a neurologist office in St Louis (where we see our ped neurologist). We live in GA. There they do it without anesthesia - and so far I prefer that. It was no worse than having say 3 immunizations and it was over. Not even a bruise from teh shots. Here in Atlanta, most of the orthopedists and neuros use general anesthesia for the process. I have heard from other parents the reasons stated are that they can find where the botox is needed MORE when the child is put to sleep fully. I disagree but I don't really konw. Gen aneth. sees like a waste for how easy it was ( I mean he did cry but only about as much as getting any other shot and it went very quickly.

Anyway, Seth had four injections in each gastroc (fat part of calf) and in his adductors (inner thigh). The effects should last 3-6 monhts. What the botox does is weaken the spastic muscle temporarily so that it can be stretched and hopefully function more 'normally" during this time. In the younger kids I think it is used to help them get through growth spurts where the spasticity gets worse. For Seth I think it has helped. One effect has been that his hams don't seem NEARLY as tight as they were even though that is not where he got the injections. His progress towards walking has been great and I'm not sure if the botox is the main reason but definitely feel it is a component.

Wish we could email - sounds like you are where I was about 6 months ago. Was yoru daughter a preemie?

Oh, on the pros and cons - there was ZERO side effects as far as apparent soreness, irritability.. nothign at all. only the lessened spasticity. I haevn't heard of any cons at all from ally my CP mom friends. The temporary thing is a draw back but its the best thing for this age. I would not expect them to be recommending surgeries and such.

Hi, I'm 17 and I've had botox various times in a few different muscles (hamstrings, hip flexors and calf muscles). Generally I have had good results. The last time....I had Botox in my hamstrings and phenol in my hip-flexors. Phenol basically does the same thing as botox...and works just as well. I had to use phenol simply because there's a limit to how much botox can be used at one time. I chose to use anesthesia...because to my understanding phenol must be placed directly on the nerve. I had to stay at the hospital a few hours then went home without any problem. I have found the botox and phenol to be pretty effective...when my muscles get too tight it allows them to relax so I stretch them. Overall, I feel that botox/phenol is a good option if your muscles are tight but not contractured enough to warrant surgery. I have never experienced any side effects from this procedure. Hope this is helpful.
Erica