Botox Injections for Kids with CP
If anybody has any experience with this or has read a great article about it, please share. We had D's consultation yesterday and the doctor recommended Botox injections for her calf and foot. We expected it, obviously, but it is still somewhat of a shock. We just have to decide whether or not to sedate D for it. The doctor prefers it that way and while I'm sure D would be much more comfortable sedated, it just worries me. It is a quick acting sedative given by IV but of course, I can't remember the name. The ICU doctors would administer it and monitor D for the 15 or so minutes it would take to do the injections.
I'm going to post a video later of how she walks now and then will (hopefully) follow up with how she walks after the injections.
26 comments:
I have nothing to contribute, but I'm always so interested to hear how D is doing. I hope it all goes well.
My daughter had botox injections twice and we didn't do sedation either time. Her doctor prescribed medicine to her to make her drowsy and it worked just fine. The injections only took a few seconds to do so it was fine. We were also prescribed some cream to numb her skin where the injections would go so it wouldn't be as uncomfortable. Hope this helps!
I have no good thoughts on botox since my is just a floppy rag doll. I do know that Kathryn over at ryntales has some very definitive ideas on botox and how to minimize the pain involved in injections. Might want to shoot her an e-mail.
FYI:
It is noteworthy that Botox has not been approved for the treatment of CP or CP symptoms by the FDA and has issued a warning about its use with children. Also Canada is investigating deaths of children with CP who were given Botox.
http://www.aboutlawsuits.com/health-canada-investigating-botox-side-effects-1331/
We haven't done botox yet, but when Piper had her MRI they sedated her via mask first, THEN placed on IV. I would think the IV would be almost as traumatic as the shots might be, especially if you don't get a peds nurse to place it. I'd find out what other analgesics are available and how many pokes the actual treatment will be.
Megan had Midazolam which made her drowsy and can be taken orally, rather than the trauma of an IV. We have had 3 good results from botox, but we just wish the results lasted a bit longer!! If it lasts for 6 months+ then we felt its worth the trauma of the injections, but the last treatment only lasted for 2 months so now we are waiting to see a specialist for some alternative treatment for her poor foot position. Wishing you all the best with the botox, from Abi and co in the UK
The last commenter sort of addressed my input. I have no experience with botox and CP, however my aunt has a condition called torticolis in her neck. She used to get botox shots, which worked fabulously....until she developed resistance to them. The botox does wear off, and it is possible (though I don't know if it's common or not) to develop resistance to the treatment - rendering it ineffective. She was able to do the botox for a number of years before becoming resistant.
We are in the same boat. It has been suggested and we are on the fence about it. Thanks for bringing this up. I interested to see what you fine.
It sounds like we're in the same boat. Monkey Boy's appointment with the physiatrist is next week, and we're almost positive that he's going to recommend Botox for his left leg. Perhaps we can compare notes if/when he gets them.
As for the sedation, I'm definitely with you. The thought of putting our little ones under is pretty scary. But Monkey had the type of sedation that you described when he had his MRI. If/when he gets Botox, I think we're going to opt for sedation. I'd rather he not be in more pain than he needs to, especially if this is something we're going to do again in the future. On the other hand, another mom of a little boy with hemi said her son was awake for it, and she said it wasn't that bad. To each her own, I guess.
Anyway, good luck with the injections. I'm looking forward to seeing how D progresses after them.
A friend of mine who reads your blog on a regular basis asked me to comment on sedation. I can't speak about the botox, but I have had 2 of my children sedated for surgeries and for MRI's and CT Scans. My second son had an MRI at 3 months and needed IV sedation for that. The placing of the IV was more tramatic for Mom than for him. Once the IV needle is in place it does not seem to bother them much and if you have the right nurse it can be done quickly. I have learned to ask for the IV expert. They may get offended, but this is your child they are dealing with and the less tries they go through the better. Also, if there is a family history of difficulty drawing blood or inserting IV's let them know, it does seem to help. The light sedation like you are describing, my son was fine immediately after waking up. However the second time, he was one year old, and he woke up cranky, until he was able to eat and drink. Once he had a drink he was fine. If you can, take a favorite blanket or toy for distraction. Also, take a cup or bottle, whatever she is drinking from now, they will probably have her drink something and all they usually have is straws. Sorry that was so long, but this was some of the stuff I wish someone had told me before we went in the first time.
sedation is prolly best...my sister had them in the calf and foot...and the one time they tried to do it without sedating her she wouldn't let them do it
OK, I just wanted to let you know that we had Monkey's appointment today. The physiatrist said his heel cords are actually very flexible, and he doesn't think he needs anything done to them - go figure. He did say that his quad muscles in the left leg could use some injections, as they're pretty tight. He said that sedation is an option, but he also has a spray anesthetic to numb the skin. We're going to give that a try this time. If it ends up being a disaster, we're going to sedate Monkey Boy the next time - as a last resort. That's our take, but again, go with the sedation if you think it will help. You know D the best, and like I said, the sedation isn't all that bad. Anyway, I'm looking forward to hearing about her progress. Good luck!
I have no info on this topic, but do have quite a bit of experience on IV placement.
My suggestion, always, is to demand an anesthesiologist to do it. We've never, ever, had one miss on the first try and its far less traumatic for the kids than getting a nurse on a hard stick who tries 4, 6, 8 times.
The hospitals will often say they can't get someone from anesthetia, but stand your ground and good luck.
We did botox first, and saw a marked imrpovement, and then we tried valium instead because the doctor said it would help with overall muscle tone, not just individual muscles, but we saw little to no improvement, and some unpleasant side effects, so now I definitely want to do botox again. And they gave her some sort of or sedative, which made her act sort of drunk and relaxed, and even though it didn't make her fall asleep, it did make it less unpleasant for her to have the injections. I would definitely do some sort of pain relief/sedative, because although it;s a pretty thin tiny needle, they do have to stick it right into the middle of the muscle, which you know doesn't feel good.
Hi, it's Ellen (Seidperson). Max got injections, and they were very helpful for loosening up his hand after he got them. He doesn't get them anymore. I had a lot of trust in the doctor who recommended doing them.
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Hello Everyone!
I really need someone's advice on botox for kids with CP, i have a 3 yr old daughter who can,t sit on here won or stnad ust jsut starting rolling and sitting on her knee few weeks ago. Her Physio therapist has suggested botox for her cuz the muscles in her feet are stiff while her lower back muscles are weak. I have no idea about botox will help or not, tried reading it about botox but have very mix feedback.
PLEASE HELP
THANKS
Maria,
Botox works by paralyzing the overly strong muscles so the weaker muscles have a chance to strengthen. At least this was how it was explained to me and how it would benefit Darsie's particular case.
We have never sedated Darsie for Botox. The first time we went in for Botox, they couldn't get a vein for the IV due to the scar tissue from the NICU. We did the spray meds for numbing. It went pretty well. The second round, she was given Versed but no anesthesia again. It worked well but she remembered the first round so she needed to be held down. It was tough. We won't be doing Botox again due to having almost no results this time.
We are having botox on wednesday and I have to say I am a little nervous. I really dont know what to expect in the days following until we start pt and ot. My sons right hand is the main place we will be doing the injections in order to allow him to open his thumb and in his elbow for pronation. keep us in your prayers and lets hope it is a success.
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I always have my son sedated. It hurts them when they are awake and they are being injected.
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