Botox for CP

[Stressmess]

Has anyone had any experience of having botox for CP? My dd 6 had an appointment today and they recommended botox in her right leg. She is diplegic but an independent walker. They said it could be up to a 6 month wait and then there would be intensive physio afterwards.

Is it worth having it done and what are the benefits and negatives of it? Thanks

Hi, my ds has had 4 different sets of Botox.

Downsides, it is poison, so it carried risk. Mostly mild, but some muscles (round face, and groin are higher risk, with speech and toileting) From the mild it makes DS a bit grumpy like he's sickening for things. It's an injection so it hurts, and there are meds associated with giving it, which again have risk, to the annoying it takes time away from doing fun things. We have never had anything go wrong though. The other downside is it weakens muscles so for the first couple of weeks things are worse....

Positives, it enables intensive therapy to get into muscle ranges which are disguised by spasticity. So some muscles aren't really used as much as they would be without the cp, and if you take out the spastic muscles with Botox you can work on the weaker ones elsewhere. But that takes effort, and in our experience that means physio twice a week, plus exercise, treadmills, swimming, tricking etc for 8-10 weeks, and that is some commitment. Also you get a lot of upside but then it tails off after the Botox has worn out, so when it is not great it is temporary.