Botox injections for children with cerebral palsy?

[cheaperthebetter]

So my DS (10) has mild cerebral palsy and has Physio regularly, a new examination has been brought into the NHS for children who have any form of cerebral palsy.
(Sorry can't tenner the name of it)

So DS had his examination and he is hemiplegic down one side too, so Physio have stated he will need Botox in his calf and hamstring on his left hand side, that they will write to his paediatrician and it is up to her wether he does as she will give it the go head.

Has anyone on here DC ever had this done? And did if work ?
Would really appreciate any info on this please ....thank you 💐

Not my child, dc of a friend. Sadly it didn’t work.

@cheaperthebetter my daughter has been having BOTOX for a few years now. She is severely affected with spastic quadraplagia. She gets 6 monthly injections in her forearms to open her hands out and in her hamstrings to loosen her legs. I feel it works really well, without it her hands are always clenched very very tightly. I cant say how much of a difference it makes to kids who can walk about and have a lot more independence though, but in my experience it's worth getting.

My son has hemiparesis after having 2 strokes. We are currently waiting for Botox treatment for his right leg and foot. I would be interested to hear more about it from people that have been through it

Wow...thank you so much for your replies 💐...

My Dd had Botox in her right calf following a heniparesis due to a brain haemorrhage 18 months ago. Initially they work but wear off when the next injections are due (she had 3 treatments) sadly it was deemed to have not worked so 3 weeks a go she had surgery on her affected Achilles’ tendon.

Botox does only last 3 months at a minimum, it may last up to 5 months so it's not a permanent fix.

My DD had them every 3 months but the effects started to wear of around the 8 week mark, the final one didn’t work as well as the previous ones.

Oh really @hennipenni.. they really didn't work so! That's a pity. Suppose every child is different so you can't predict how they will benefit. Hope you're daughter is doing well now!

Thanks, She’s getting used to walking with her plaster- with or without crutches depending on how she feels! if this op and the physio after don’t work then she’ll have to have her ankle and foot fused to stabilise her joint.

Was it a CPIP assessment?

Botox works on dynamic muscle tone and tends to be ineffective if theres any shortening of the tendons/ muscles. It was developed for management of muscle spasicity (and not wrinkles!!!) and has been used for quite a long time. The big thing is the physio input afterwards to try and maximise the time the botox is effective before it wears off.

It can be really useful and is less invasive than surgery but sometimes if the tone is very high or if theres already some shortening it doesn't work as well.

Its worth considering and having a good chat with paediatrics and your physios about the pros and cons

Hope that helps

Hi, adult with CP here. I never had botox as a child but I have as an adult.

I had three injections in each calf followed up by serial casting for a few weeks and had what I thought was a great response. My feet were less turned in and I had greater range of motion in my ankles which improved my sitting in my wheelchair as my feet stayed on my footplates better. Physios wanted to see more but I was pleased.

I then had just injections a few times but have developed another unrelated condition so am no longer able to have it. It’s 7 years since the casting and i think 5 since my last jabs. My feet are more turned in again but not what they were precasting. If I was allowed another go I would.

I don't have CP, but have had therapeutic botox for a muscle that was massively over contracting as other muscles in that arm don't work anymore.
What it really, really helped with was that relaxing enough to do the physio, splinting etc to stretch the muscle back and damp down the whole thing - before I just couldn't get it sorted as it was so tight.

I had three lots of botox, and since then it has been OK. But it's not a magic bullet and the physio and working on it is crucial

@hennipenni, I hope the op works for her!! Also, yes I should have said the splints after the botox for her hands are an important part of th ed muscle loosening!