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Terri Mauro

Botox helps kids with CP (no, not with wrinkles)

By February 9, 2006

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Although it's mostly known for smoothing the faces of aging movie stars, Botox may have a more noble use: helping children with cerebral palsy gain normal movement by weakening stronger muscles and strengthening weaker ones. According to a pediatric neurologist at Duke Children's Hospital in North Carolina, the drug forces the stronger contracting muscles to relax, a condition that lasts for a few months. During that time, physical therapists can work with the child to develop the weaker muscles that control extension. Although it's not appropriate for all children with CP, the treatment may help some move normally.
Comments
January 17, 2008 at 12:34 pm
(1) cjohnson says:

my child had a stroke during labor. She has had the botox injections twice, b/c her right side was affected. Her muscles are very tight. when she has botox injections her muscles loosen up, but are they safe to continue for long periods of time? She is 2 1/2 yrs old. If anyone could tell me more info I would appreciate it.

January 22, 2008 at 1:55 pm
(2) spam_nachos says:

My daughter is 6yo and has CP. She’s been getting botox injections every few months for 2-3 years, and it does make a difference. It’s important, of course, for the doctor to inject in the right places in the legs (because of the complex way the muscles work together for walking), but it really helps with her walking. It’s kind of funny, though, how if your a kid with CP that needs botox for walking, you have to jump through the hoops, but if you want botox for wrinkles, you can pretty much walk in off the street and get it.

January 25, 2008 at 10:32 am
(3) Carol says:

http://specialchildren.about.com/b/2006/02/09/botox-helps-kids-with-cp-no-not-with-wrinkles.htm

Botox has been used to treat muscle spasms and pain for quite a long time now–the stars and their poor wrinkled faces came much later. It does help a great deal in alleviating pain and contracture. Our daughter had been getting Botox injections for nearly 15 years now. Your researchers just barely see the surface when writing for About Dot Com regarding so many topics. Sometimes it’s quite sad, for it is the only thing some web-surfers read about any given topic. Though some reference is better than none for many topics in our lives, the surface-skimming that busy Americans do is often more harmful than nothing at all.

January 26, 2008 at 9:27 am
(4) Jenessa says:

My daughter has been using Botox for several months. The one thing to keep in mind that I was not told about, is that after injections, you should have your child in extensive therapy. I was told that without the extensive therapy and stretching, that you are pretty much wasting your time and putting your child through unnecessary pain because the muscles will go right back to the way they were before the Botox. Maybe this is why my daughters’ seem to be wearing off too fast.

March 1, 2008 at 8:55 pm
(5) Jane says:

My daughter is supposed to be seeing a pm&r to get botox. my daughter has schizencephaly, with that spasticity, is the botox worth the risk. Im hearing about all of these side effects and even deaths, its starting to worry me. But my emily she is just so tight she can hardly function. Im at a loss here

May 23, 2008 at 6:10 pm
(6) Jennifer says:

I have twin 2 1/2 yr old daughters they were 3 1/2 months preemie twin A has spastic Cp and we had her botox consultation today they want to sedate her I was wondering if anyone in my situation who has went through the botox injections can ease my heart alittle they have been through so much already. If anyone in my situations reads this I would love to hear your story. A concerned parent.

April 14, 2009 at 10:23 pm
(7) lisa says:

my son is 2 1/2 and has c/p and being so stiff botox really helped he just started to walk he does therapy five days a week I think the more therapy with massage helps but, theres not alot of medications to help with tone and stiffness with out side affects my son was on volume and tired alot and not his self so we tried botox

April 26, 2009 at 12:02 am
(8) beekaycro says:

I do not agree with Botox treatments. My child has a Baclofen pump installed in her abdomen that dispenses muscle relaxant to her spine. Without it, she would not be able to bend at the hips into a sitting position. I’ve heard too many bad stories about Botox’s side effects – plus it’s not approved by the FDA as a relaxant – that should tell you something too.

April 28, 2009 at 4:12 pm
(9) CPMOM says:

Botox is amazing. As for the FDA approvals, money talks in order to get approved, celebrities have the money to help get cosmetic botox approved. We’re just trying to help our children anyway we are able (not a lot of money flowing here ). My son has been getting botox injections for 2 years, he started with mild sediation (versette). As he became more aware of what office or where we were, we moved over to full sediation. I’d recommend it for children dealing with high muscle tone issues. If doing a lot of fine muscles, full sediation is the way to go. As for the reports that are written up about Botox (especially writen last year) are not a FULL picture…talk to your child’s doctor, they should put you at ease. After all it’s not any joe-schmo doing the procedure it should be a trained doc.

April 29, 2009 at 5:41 am
(10) Melanie says:

My son is 6 and has Asperger Syndrome with lots of sensory issues. His calf muscles have shortened due to toe walking and he suffers from pain behind his knees and in his lower back. We have tried serial casting to no avail. He will be getting the botox injections in both legs next week and when his casts are removed he will have intensive physio and stretching exercises at home to help lengthen the muscles.

April 29, 2009 at 9:11 am
(11) Vicki says:

My 13 year old daughter has received the shots for 3 years now. She is unable to walk independently but can stand for transfers. We can tell when she is ready as her knees are more bent.She is now able to feel when she needs the Botox in her hamstrings as well. She says it is very painful although we used to use the numbing cream but have moved on to a spray for the past two appointments. I did question our physician and looked at some of the data provided when the negative publicity came out, but felt comfortable enough to continue forward. When I saw the last bill for 9500.00 I was curious what would happen if we did not have private insurance and she was covered under public insurance..would they cover such an expense???

April 29, 2009 at 12:24 pm
(12) cpmom says:

as for the question about public aid covering Botox…yes, my son has medicaid & BCMH and both do cover the Botox for him. Even when I had Private insurance for him, the co-insurance was picked up by BCMH. Can’t imagine making him suffer with what are described as “charlie horses” in his legs. If you are questioning it, I’d say you can try it once, if you don’t see a difference, it wears off and you don’t have to do it again. Make sure your doctor is experienced & is explaining everything to you & that you are comfortable with the doctor.

May 1, 2009 at 2:16 pm
(13) Marie says:

My son just had his first Botox injection last week, I asked the Dr what the possible side affects were and she told me there weren’t really any I should be worried about. Yesterday my husband saw on the news that Botox injections have been linked to deaths in Children with CP. The Dr told me my son will need 2-3 shots a year because he has mild CP and high tone in his legs. He has short heal cords so she wants to do the Botox to help stretch the heal cord and to avoid surgery until he is 8-10 years old. She said he will most likely eventually need surgery on his heal cords at least for sure on his right side. He has Tri-Pelagic Spastic CP. Now I am not sure what I should do the next time she wants to give him Botox. It said the cases of death were rare but that the majority of people who have died have been kids with CP. How do I make the right decision? The biggest part of me is telling myself not to let them do any more of these injections. The Dr said he needs them so that when he walks his feet will sit properly on the ground because if they don’t then his bones will not develop properly. I just don’t know what the right thing to do is now with the results of this new study. Had I known about these risk before she did the injection I probably would not have even let them do it this time. He goes in a week to get casted on both legs to stretch his heel cords. Any advice is appreciated.

May 3, 2009 at 5:47 pm
(14) Elly says:

We are trying to have botox paid by the insurance company for her salivary glands. They will pay for it for her arms and legs but not for her glands. Has anyone had luck with the procedure and getting it paid for?
As for the pump vs injections…injections go into specific places. If a child does not need their whole body released the pump is not good. My daughter’s spasisity works to her advantage in some areas of her body and not it others so injections are right for us.

May 5, 2009 at 6:05 pm
(15) CPMOM says:

Marie~
In order to have a reaction to the botox that would cause the unthinkable, it has to be injected into the blood stream. You need a trained professional doing the injections, they use muscle stim machines to make sure they are getting the muscles. Ask the dr for signs to look for if something has gone wrong with the Botox…they’ll give you a list & if you see these signs (which are huge signs, that are clear) take your child to the ER, they have a counter drug they can stop the botox.

July 22, 2009 at 4:40 am
(16) a grieving mother says:

I had a daughter with profound cerebral palsy. Throughout her life she was on various medications for her severe Spasticity. Eventually she became immune to all those medications. Her neurologist basically gave me two options to avoid surgery. His two options were to give her botox or the baclofen pump..at the time I thought botox was a better choice, but let me tell you I was so wrong!! My daughter was 7 yrs old when she got her second botox injection..two days after that second injection she passed away. I am so regretful..My daughter would now be 16 yrs old and I thought I was making the right decision. When she received her 1st injection I was like “WOW” this is a miracle! “she’s calmer”. Everyday I wish I could go back and have made a different decision. Now all I live with is regret. I have nothing but memories of her..I miss her so much…

September 24, 2009 at 1:16 pm
(17) Stacy says:

My son Rowan had his 1st botox injection yesterday. He will be 3 in 2 months. He has spastic triplegic cp, moderate. He is learning to walk with a walker and I beleive the botox will help even more. He was not sedated. They used emla cream to numb and a freezing spray right before injecting. He also was given a pain medication with codeine prior to the procedure. He had 6 injections total and cried the whole time. But as soon as it was over he was fine and happy again. I would tell parents to avoid sedation or anesthesia if possible. Im an RN and I know there are risks with botox, but there are also risks with sedation and/or anesthesia. He did not cry anymore than he does when he gets an immunization or and IV started. I dont think sedation is neccessary in my sons case. My sons doctor that gave the botox injections has cp himself and has gone through the botox experience, so he was very reassuring and empathetic.

October 29, 2009 at 12:54 pm
(18) Stef says:

My dughter will be 3 in december and is schedculed for botox injects on Nov 19. She has mild CP and basically can’t bend her right ankle without assistance. I am concernced about whether we are doing the right thing or not. After reading some of these blogs I am now more scared then I was before. Hearing of someone loosing their child to these injections is very frightening! can anyone help?

March 29, 2010 at 1:28 pm
(19) Erica says:

My son just turned 2 a month ago, he was born 3 months premature, and was diagnosed with CP 4 months ago. It is a mild case and the stiffness and spasticity is present only in his right leg. He has an extremly hard time straightening his knee and heel cord. He has been in PT continually for several months. He does not walk independently,but will walk holding onto objects or a hand. Just recently the therapist mentioned reccommending botox injections to my sons doctor. Immediatly I began research both on and off line. I have not had the chance to speak with my sons doctor about it, but after reading some of the post am not sure of what to decide. I know there are risk with anything, but I’m not sure if I’m totally convinced.

April 4, 2010 at 11:06 pm
(20) Melissa says:

Erica, I was like you when we started Botox several years ago. While there ARE possible side effects, for many parents, the possible good considerably outweighs the possible bad. Make sure your child is being injected by a neurologist who has been educated on Botox for spasticity. I highly recommend finding a neuro who will put your child under general anesthesia for the procedure as it can be quite uncomfortable. Also, consider how your child may view the procedure…a doctor coming at him with a needle to stick him multiple times and inject a painful liquid in him. For me, the risks of general were worth preventing anxiety attacks in my little girl.

Botox has done so many wonderful things for my daughter and I would highly recommend it to any parent who is considering it for their child.

August 8, 2010 at 5:15 pm
(21) amber says:

i have cp it very hard i had botox (still do) but it didnt work so i had surgry after ward i was i cast for sixs week when i got them off i went home the doctor said a bath whould but it didnt the bath made my body have ten or more spasms in my legs now my knees are locked up i been recovering and my mom has been taking me to therpy :)

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