United Brachial Plexus Network, Inc.

Stephanie has finally gotten her Botox appointment at Children's Mercy in KC. It is Aug 30. From what I understand she should be able to go home a couple of hours after it all starts. I have tried to explain the procedure to her. If anyone has had the procedure, please let us know what to expect.

My daughter had the botox injection last September, she had other surgery at the same time so can't really say how quickly she recovered from it alone, however she came home that same evening and was back to her normal self within a week. There was a little boy on the ward who had the botox injection before Shannah. He was literally bouncing around a couple of hours after returning to the ward.
As for long term benefits of botox, it unfortunately didn't have as much success as was hoped, and Shannah didn't gain much more improvement than she already had. However, she is nearly 9 years old so maybe her age was against her.
I certainly would recommend you go ahead with it as every child is different. Good luck, Glenis

I don't know if this is allowed for this treatment but there is a great numbing cream called EMLA that is used for injections, IV's etc. It really works but it takes an hour for it to get numb. You put it on the area where they will do the procedure and cover it with Tegaderm (a bandaid that is like a plastic sheet) and you wait an hour or hour and a half. It really numbs very well.

something to consider at least...

-francine

Stephanie is suppose to have the surgery on her muscles, if there is sufficient amount of recovery after the Botox. She has to see a PT twice a week for I believe 3 months. She is 8 and 1/2 years old. The doctors said her age does go against her. Pray for us, if this doesn't work, they said her arm would continue to contract and she will have less and less use of it.

I hope everything goes well for Stephanie. We've never had this done although Nicole's dr. did mention it to us once. Please keep us posted on how it goes. I'm curious in not only how it impacts her function, but how she feels about temporarily losing some function she presently has. The good thing is that she's old enough to have a good understanding of what will happen. Take care. -Tina )

Bit more info for you. The Botox is injected under a general anaesthetic so no need for EMLA cream at the site, it was used on her hand for the anaesthetic though. Our surgeon recommended physio 3xweek, luckily for us the pt said we could do this at home so not too many visits to hospital. I asked the pt about a splint for her elbow contracture, she wears it only at night, and doesn't mind wearing it, but it looks nothing like the splints on your website, (yours look better), however the pt says the arm looks straighter to her, I don't think I notice it because I'm looking every day.
Finally, and most important I should say that she experienced no loss of function at all after the botox injection. The procedure sounds dramatic because effectively the muscle is paralysed by the botox but during the physio sessions the muscle is learning the correct way to move.
On our webpage over here there is a link to a page about botulinum therapy the address for the page is www.neurologychannel.com

Taylor had botox injected into her tricep muscle to hopefully get her bicep to click in better after Mod Quad. We had a good experience with this. Used emla cream before we got there to help with the numbing and we also chose to use versed. This helped a ton. Taylor was a little out of it but doesn't remember a thing of the procedure. She didn't cry once. We applied the emla cream before we left for the hospital so she was numb by the time we got there. They gave us a room that had a tv/vcr in it and we could bring videos to watch. So when we got there we popped in a video and they gave her the versed. We waited for it to kick in and when they did the injections we distracted her with a new toy she really wanted. She didn't even know they were doing anything. We saw good results from the injections too. Please feel free to e-mail me if you have any questions. We had this done at Minneapolis Childrens hospital. Taylor was three at the time and we did explain a little to her about what would happen so it would seem more familiar to her. I was pregnant at the time with our second and Taylor got to see them take blood from me several times before her injections too and that helped some to see that I didn't react to the needle.

Mara

What type of side effects did Botox have? The doctors are going to put her to sleep, use an ultrasound to find her muscles, then inject them. What should we expect afterwards?

Shannah experienced no side effects from the botox itself. The worst bit was when she was coming round from the anaesthetic, she became very distressed and was crying and kicking her legs. I massaged her legs which seemed to help a bit. I've heard this can be a common reaction to the anaesthetic, but have no other experience to compare with.

Hi there, I e-mailed you directly. Taylor did not get put under. They just sedated her and she did great with the procedure. No side effects. It was just weird for her in the beginning because she was used to counting on that muscle to do the things she was used to. I'd say it took her a day and she was finding new ways of working around it. Then we upped the e-stim and therapy to strengthen the bicep and saw good results from that fairly soon too.