Cerebral Palsy Support Group

I have mild CP, and have never gotten botox. When I was younger they wanted to do it but my parents declined to do it because it was experimental then, about 13 years ago and still is really.

I just have to warn you as well that I read there has been some deaths of people with CP linked to botox, I suppose people that started having injections years ago, so the long term effects are not good I don't think. Just remember botox is a toxin that is being injected into your body.

I would recommend PT and a muscle relaxer drug over botox, drugs have side effects, but they're not toxic. That's what my doctor recommended for me anyway recently. I would just stay away from anything where the long term effects aren't known yet. If I find the article on the net about botox and CP deaths I'll post it. But I'd stay away from botox, not trying to scare you, but its better to be safe. Hope this helps.

-Tim-

This is the actual warning from the FDA:
http://www.fda.gov/Drugs/DrugSafet...

If you read the second paragraph is states, "The most serious cases had outcomes that included hospitalization and death, and occurred mostly in children treated for cerebral palsy-associated limb spasticity."

So I would question your doctor as to why he's recommending botox over PT and a muscle relaxer drug. Unless he's not aware of the FDA warning. Best wishes.

-Tim-

Preston has had them twice. He had a set back both times. For about five months after each treatment he seemed to do less, like he wasn't able to do things untill the treatment started wear off. Jackie has not let him get them since.

My daughter who is now turning 6 has had Botox since she was around one and a half. She has moderate CP and it did wonders for release the tone in her legs. The challenge with Botox is after a period of use the person will develop a tolerance to the medicine. The first round lasted about 6 months before we had to go again. By the time she was 4 they only lasted 3 months. She never did well with any other relaxers, but Botox is not supposed to be a long term solution.

We actually had a selective dorsal rhizotomy this summer to "permanently" release the muscle tone. But that is a whole other subject.

As with all forms of muscle relaxers there is always a chance of very bad side affects. But I can say with absolute confidence it was the right decision for my daughter. We were able to stretch and lengthen far better with the Botox than without. But this of course has to be done in conjunction with PT and stretches.

We were lucky to have a pediatric physiatrist when we first started this process. We moved to Florida for a short time were we were not so lucky. The pediatric neurologist didn't do as well. If you choose to do this make sure you talk with your doc about how many times they have done this and how they do the process. Many may try to do this in a operating room or in the office. Personally I have done both. The OR is easier on the parent but in my opinion not worth the amount of time in recovery.

The in office can be tough on you as a parent. Since the process requires that the Botox be placed at the exact place to deaden the muscle. The doc will use a tool to stimulate the muscle so they now what they are hitting. This mean the leg or body part must be held still while they inject the Botox. Believe my holding down your own kid while they get 4-6 injections sucks big time. But when a few days later they are moving or walking better than 2 weeks before you know why you did it.

So the short version of the reply is, I have met a lot of kids that have had this done. They all seem to benefit. However each kid is different so find out all you can and make the decision that is best for you.

My son is having his 4th lot at the end of this month, ( he has mild right side hemiplegia), he has benifited from the last 3 lots with the last having a cast fitted as well, this will most likey to be his last but we will see how it goes, i was always told that by about this age he will be having surgery to lenghten tendons etc, we go the the Royal Childrens Hos in Melboune Australia, always done under a light general anisthectic, he has never had comlications but he is a little sore afterwards and he leg does ache for a little while after , this is due to the increased work his body does to adappt to the mucsles relaxing
hope this is of help
cel ;-)

Thank you everyone for your feedback. It's a tough decision and I need to make sure it's in the best interest for my lil girl.

Now my doctors are suggesting Botox lol...

I had botox done 3 times and the first time it worked great the 2 times after that not so much because they cannot inject it in the same spot twice so it became a guessing game of where to inject. About a week after i had it done in my leg i was becoming weaker which is what will happen before getting stronger i was tripping a lot and jut very weak in general. i had it in my right leg and right hand and arm. if you have any other questions let me know

Thanks, I've heard that too that sometimes it works and sometimes it doesn't. I'm going Thursday for an evaluation then maybe injection soon after.

I only plan on having it done once as of now just to see if I can relax my wrist enough to let my cyst go away. Then I plan on going for an evaluation for wrist/hand tendon transfer surgery maybe in a month or so to see if the cyst goes away.

I just think in the long run the tendon surgery in the hand/wrist will be more beneficial for me so I don't have to keep going back for injections, and its something I'll hopefully never have to have done again unlike the injections.

Hi,

My son is 9 years old and up until April 2009 was getting botox twice a year. There are risks involved since you are injecting botulism (food poisoning) into your child's body. Yes there have been deaths linked to it. My son greatly benefited from the botox, but that was before we found out about an oral medication that works just as well. It's called baclofen. It is a muscle relaxer and the only negative is that your child has to be weaned onto it and then off of it otherwise it can cause seizures. My son took his baclofen 3 times a day and it worked. Not quite as good as botox but there are no injections to traumatize your child, no casts to put on his/her leg/s. I would recommend getting the tablet and crushing it between spoons and then adding a little juice to the spoon. We tried having the pharmacy compound it which made it liquid but we also found out by trying it that he wasn't getting the same amount each time and he ended up having a seizure. One of the side effects of this oral medication is it can make your child sleepy. Some kids are so sleepy that they don't go to school, but it's a very small percent. My son is no longer doing botox EVER, and he is off the oral baclofen and has a baclofen pump. The baclofen pump is in my son's stomach. There is a catheter that runs from the pump to his back where it is placed into his spine. By choosing this form my son gets a smaller percentage than he was taking by pill and it's going right to where he needs it; his legs! If he was taking the pills at the percentage he is getting from his pump, he would be sleeping most of the day.
Please feel free to email me if you have any questions. I wish I had known about these kinds of groups when my son was first diagnosed.
mommie2codybug@aol.com