The Latest on Botox for Cerebral Palsy
Friday May 1, 2009
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. Also new today: Site of the Day | Today's News and Views | Tip of the Day
Photo by Don Murray/Getty Images
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.
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?
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.
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
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.
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!!!
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.
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.