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Terri Mauro

The Latest on Botox for Cerebral Palsy

By May 1, 2009

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The use of Botox to treat muscle spasticity in cerebral palsy has been getting a lot of attention lately, both in the comments to my old post about it on this blog and in an update on the subject from the U.S. Food and Drug Administration. The FDA, which has never approved botulinim toxin for this use, issued instructions to manufacturers to add a boxed warning on labels about possible negative effects. The agency notes:

In pediatric postmarketing adverse event case reports ... the reported cases of spread of botulinum toxin effect beyond the site of injection were described as botulism, or involved symptoms including difficulty breathing, difficulty swallowing, muscular weakness, drooping eyelids, constipation, aspiration pneumonia, speech disorder, facial drooping, double vision, or respiratory depression. Serious case reports described hospitalizations involving ventilatory support and reports of death.
The agency's recommendations to healthcare professionals include:
Be alert to and educate patients and caregivers about potential adverse events due to distant spread of botulinum toxin effects following local injections including: unexpected loss of strength or muscle weakness, hoarseness or trouble talking (dysphonia), trouble saying words clearly (dysarthria), loss of bladder control, trouble breathing, trouble swallowing, double vision, blurred vision and drooping eyelids; understand that these adverse events have been reported as early as several hours and as late as several weeks after treatment; advise patients to seek immediate medical attention if they develop any of these symptoms.
If your child does have a bad reaction to Botox treatment, the FDA suggests reporting the incident through its MedWatch Adverse Event Reporting Program.

Will these precautions make you less likely to seek this treatment for your child? Or have you had such success with it that you're willing to take the risk? Share your experience in the comments.

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Comments
May 1, 2009 at 1:51 pm
(1) AnneS says:

Personally, I wouldn’t use it. Wouldn’t before, and still won’t now. It’s a toxin. There are safer ways to help children with cerebral palsy progress.

June 27, 2009 at 2:47 pm
(2) Mary Zylstra says:

I would suggest that anyone interested in using Botox on their loved ones with Cerebral Palsy to rethink and investigate all the awful things that can happen. Why is this being allowed use on people with Cerebral palsy in Canada?

June 30, 2009 at 4:45 pm
(3) cpmoma says:

Do either of you live with a child that has CP or Spastic muscle spasms? As a mom that has seen first hand what the muscle spasms are like…you don’t want them to have that pain. Ever wake up with that “Charlie horse” in the middle of the night that you just can’t stand up with? If you are properly educated when your child receives the shots you know what to look for, you know that there is a reversal shot too. You know when your child is in need of those injections again. You know what withdrawl of those shot are like…the muscle spasms do NOT stop. Constipation comes with the territory, lack of upward standing & moving causes constipation (think about your last REALLY long car ride). The inability to get up at your will, move to get comfortible, etc. You way out your options. It’s not about vanity, it’s about making your child comfortable. It’s about releasing the pain even if it’s temporary. Only TRAINED Doctor’s should be doing these injections, only Traind doctor’s should be educating you on what to look for. Until you’ve walked in their shoes, don’t coment on them. I wouldn’t trade my son for anything. If it’s going to free him of the constant pain he’s in right now, then I’d get him in to the Trained Doctor’s office tomorrow. By the way our next is scheduled the next Month & He needs them now. You sit up all night with him when you can’t do ANYTHING FOR HIM TO HELP.

June 30, 2009 at 5:37 pm
(4) Mary Zylstra says:

Yes this story of a young women in Canada touches quite close to home. Read the story!
http://www.thespec.com/article/589348
http://www.thespec.com/News/Local/article/590559

June 30, 2009 at 6:29 pm
(5) Eleanor says:

My daughter will be receiving Botox in her arms, legs, and mouth next month. When we have had Botox in her arms and legs we have been able to get her spastic muscles moving again. This time around we will be serial casting her hands so they will not turn in so much. Believe me, we have done lots and lots of intensive therapy but her muscles just will not respond. The next step is surgery which has its own set of issues.
This will be the first time using Botox for her salivary glands. She has already had two surgeries, one did not work and the second put her into PICU for 4 days and the hospital for a total of 10 days.
Maybe those people who have other therapies can share them.

July 1, 2009 at 1:57 pm
(6) karen Giacomelli says:

My daughter Francine has been in the hospital for 16days because I thought giving botox in her lower back and hips would help the pain also. Big mistake, her swallowing is paralyzed and her eyelids dropping. I don’t think any pain relief is worth this. She is being tube feed and has a pic line inserted in her arm. She was receiving botox for a few years, my opinion is that the muscle must get damaged with the constant injections and does eventually does not absorb all the injections and then leaks into your system. Causing paralysis of other parts of their body.
I will never ever use botox on my daughter again!!!

July 6, 2009 at 10:40 am
(7) karen giacomelli says:

Dear CP Mom
I am Francine Giacomelli’s mom, it is three weeks today that she has been on a feeding tube because of botox spread. You talk about a reversal drug, please tell me what that is. The hospital’s in Hamilton are not aware of any reversal drug. Tell me the name so I can educate them.

October 20, 2009 at 2:45 pm
(8) candy says:

My son had botox. 1st time a miracle, 2nd some help, 3rd, no help and he is very stiff with severe spasms now. Has anyone else had this experience. He is a sharp young man, lawyer and severe cp.

February 11, 2010 at 6:40 pm
(9) Grace says:

I have cerebral palsy, Ostio Arthrist,fibro,im 35 and id be a very un happy person without it!

February 28, 2010 at 3:46 pm
(10) Elizabeth says:

Botox treatment for cerebral palsy has been a god-send to us. For ten years now, our daughter has received annual botox injections in the muscles that are affected by her mild cerebral palsy brought on by premature birth and a severe brain bleed while in the NICU. Administered by a physiatrist who knows what she’s doing, this treatment has allowed us to avoid damaging surgery and been supported by our pediatric orthopaedic surgeon and physical therapist. This treatment is highly effective and used in the best hospitals in the country including Children’s Hospital in Boston.

June 8, 2010 at 11:48 am
(11) Elizabeth says:

My son is turning 6 years old in 9 weeks, he was a premature baby almost died, for the 1st year of his life always ill with something back and for the hospital. At 18 months diagnosed with CP hemiplegia with some spacticity, he looks like a normal child until he walks or talks, he has all the available therapy and when he was 3 he had his 1st injection of botox, it really did wonders for him, we missed the 2nd dose of botox as our brill consultant was in the hospital himself, and my son’s leg got pretty bad, he was then finally given a secod dose and once again it did wonders I think the consultant was even surprised at how well it took to my son. Our consultant retired just after the 2nd treatment and we have a new consultant who may or may not refer for a 3rd injection but this time around I am slightly worried because we have to go to a different hospital and different doctors and nurses, the hospital we are with my son is a regular visitor so they know him and know his reactions, he doesnt really respond fully to sedation so when the procedure is due, they know exactly what to do with him, with a new consultant and nursing staff I am worried there maybe a mistake and slighly concerned about the side affects of it going wrong. But if his prior consultant was doing the procdure I would say without a doubt my son would have the injection

June 29, 2010 at 1:44 pm
(12) mom14 says:

To those who have had bad and dangerous results from botox, you’re doctor probably did not inform you that it is not safe for people with moderate to severe symptoms. Generally, the patients with the best chance for a positive outcome are those with mild symptoms. My son has very mild cp and our neurologist told me that it is NOT for people with severe symptoms, but that our son was a great candidate because he walked more on his left toe that on his heel or flat footed. I’ve been told this same thing by our therapist. The key is getting really good medical advice. We are seen at a children’s hospital in Minnesota, which has some of the best doctors in the country. Please make sure you do your research first – you could make a horrible mistake or passing up the opportunity of a life time.

August 20, 2010 at 11:02 am
(13) FullOfFaith says:

I have a 3 year old little girl who has very mild C.P. She was diagnosed at 7 months, and we have had her in early intervention and lots of therapy both OT and PT since she was a baby.

The therapy has done wonderful for her, however, we are at the point now where the therapy is only keeping her where we are at. She still has muscle spasticity in her left arm/wrist and left ankle/foot/toes…

She is very mild, so I am curious as to the last comment posted on mildness, if she is a good candidate.. I am going to meet with a Botox Doctor, (20 years of experience in Botox), and hopefully I will have a better understanding of the pros and cons…

March 8, 2011 at 2:09 pm
(14) libby72 says:

as for the first two people that commented, I am wondering what their experience is with cp and the severity. do they have a child with cp? Well I do and he is an awesome little man. My son Dylan is 12 and so far wheelchair bound. He watches the nieghborhood boys play football across the street.(they are mean to him, tease him , and wont let him play) He isn’t hatefull or resentfull about his situation which just makes him even more of an awesome kid. As a mom that sees the hurt on his face as he is always on the outside looking in, it is so very painful.He wants to go to a waterpark , but I dont know how I can make that happen.
I have an appointment to see if botox will help. I refused to do it 10 yrs ago, I felt it was too new. now so many years later and feeling broken hearted about the his childhood plagued by the things he never got to do I am desperate to grasp an oppertunity that may give him the only chance that I know of to help him hopefully walk. I know there is no miracle cure and I am trying not to get my hopes but realistically if it just loosens him up enough so he can take steps without crossing(scissoring) his legs then we have a chance to make this be an outcome that can make this a happy story with a happy ending. I am so scared that something will go wrong and make things worse or be the biggest mistake. I am researching the best I can to make this decision and just want to do what is best whayever that might be. So to the two people who left the first comments, when you pass judgement or say “you would never….” just realize your heart is just not hurting enough or you would be suprised of the lengths one might go to put a smile on a deserving little face. If anyone has any helpful info they think I should know I would be very appreciative.
Thanks for listening and wish my son luck!

March 27, 2011 at 8:55 pm
(15) Monica says:

I have CP I am a fan of natural medicine. I will not inject my body with toxins and please although some may think you are doing good for your children with CP please consider what you are doing for there bodies on a long term basis. Itís a poison. Take care. HUGS

April 8, 2011 at 8:20 pm
(16) anonmom says:

I am the mother of a beautiful four year old with mild CP- affecting mainly one leg. I am so incredibly torn about Botox. Her doctor is recommending it, but I am not sure. Can anyone point me towards research? I have been told there are really no long term outcomes to look at. Monica, what kind of natural medicine do you recommend? Thanks for any help.

May 13, 2011 at 9:37 pm
(17) Danni says:

I am with my boyfriend of two years. and he was born with cp. it effects his legs more than any other part of his body. his legs are twisted. he falls alot. its hard for him to have to take a step up a stair let alone many. he has basically shattered his right hip. though that doesnt bother him more than the bursitis in that hip along with all the muscles tightening. and they are always tight. not just spasms. im wondering if there is any relief for him with botox. or is there something else he would benifit from better. He will be 42 next month. just trying to help eliviate his pain. I know he needs a cortisone shot for his hip. just getting the doctor to do something bout it. but his spasms worry me with his constant falling. thanks for any help/

May 16, 2012 at 1:23 am
(18) nicopapa says:

botox injections only benefit young children. it is a poison indeed and needs to be performed by a specialist doctor in botox, not just any orthopedic who says he can do it, non either by a neurologist who is not specialized. I have met a lot of children with miracle results after botox, usually it gives a push to the child in a time when he/she’s blocked with physio and needs help to go forward. i have seen children being able to sit independently after botox, or having a far more normal walk with their k walker. botox’s effects go away. maybe the unpleasant incidents have been caused due to short experience of performing botox on behalf of the doctors. dose is important and which muscles you chose to botox also

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