Botox & cerebral palsy

[Kitty0608]

Hello there

My DS was 9 weeks prem & diagnosed with mild left hemaplegia cerebral palsy.

He is now 4 & has been referred for botox treatment on his leg in April & we have pre assessment appointment next week.

If anyone has experience of botox treatement good or bad I would love to about it.

Thanks

Kitty x

We dont have any personally as DGS has a different type of CP. A mum we know though whose DS has spastic diplegia gets very good results from botox and he's been having it for a few years now.

We know of children who have it with good results. I think it varies as to how long it lasts for.

DS has other problems and has had one treatment of botox in his legs. I think it did make a bit of difference but not enough that there are any plans for a repeat at the moment

dd almost 5 had botox 6 weeks ago to both calves and ankles and was in bilateral soft casts for 6 weeks after. she had a general anaesthetic just to keep her still for casting. she coulg still walk using her walking aid. i wouls say the botox has made some difference to her. she pulled herself to standing something she has never done before. she didnt pay any attention to the casts probably because she is used to wearing afo's. good luck with our ds i hope it works well for him.

My son has left-sided hemiplegia and will be 13 next month. He has had many rounds of Botox, mainly to left gastroc. achilles, hamstring and lately soleus as well. Sometimes he has had it under local in day clinic, other times under general anaesthetic. We have always had increase in range of movements, which do wear off in the end, but if you get lots of physio in before it wears off, other people report permanent gain. What I would point out is that my ds has had no surgery and I think Botox has definately help delay this, which is what you want. Lately he has had Botox into his left arm, and I would question how much he really has gained from this. Your child will be tired afterwards. Serial plastering of the leg is usual afterwards to make sure they get a good stretch.
My son developed epilepsy a few years ago and there is some evidence that there may be an increase of epileptic type symptons after Botox, if your child already has it, which we have experienced, but I don't think this has been backed up by reasearch.
If you have any more questions will look again tonight. Good luck and don't worry.

Thanks for your replies, sorry haven't been able to reply since my original post.

Sam will be in a cast & I think he may find that a bit difficult. Ferryman & Supermum did your child need anytime off school after the botox? Sam will be getting his botox on a Saturday & he goes to nursery on Wednesdays & Thursdays, do you think I'm being to optomistic to think he will be ok to go to nursery that week? And what happens regarding shoes?

Thanks for any advice

Kitty x

dd had her botox on a mon and was back to school on wed. would have sent her on tues but she was miserable with head cold.( very mean mum here.) i think sam should be fine for nursery on wed. re shoes the hosp gave us sandal like things with velcro straps on them but saying that we had a pair of nice shoes about 2 sizes too big that worked well. good luck with it all.

Thanks for all the advice and replies, will let know how he gets on xxx

dd probably has SD CP - recently had an MRI and we are waiting for results. She is 20 months old. Tbh I am really quite concerned about the risk of epilepsy or at least seizures in any case. Even if it's a rare side effect, I don't know I'd want to take the risk.

DD1 has had botox a number of times, in calf and in wrist. Although the effects do wear off gradually, requiring forther injections, we have found it helped dd enormously.

Another positive vote here. My gut reaction was "you are not poisoning my daughter" but we deceided the potential positives outweighed the risks. the results have been remarkable and actually I can´t wait until next week when we go back and hopefully get her achilles re done and her aductors done for the first time.

DD is spastic quad cp and I think was 2.5 when she first had it. Our experience is slightly different as not in UK. She had it done under local which was awful for me but so much better in the long run for her and after an ice cream she hasn´t hated me afterwards! She was not put into a cast but we were offered daily physio for 2 weeks afterwards (we usually get twice a week) we didn´t think take them up on it just do extra stretching at home. Its not so much the botox that helps but the physio or stretching that can be done while the effects are felt. For example bones and ligaments can grow without being pulled out of shape.

She also has day and night AFOs. She didn´t need any time off nursery (she goes everyday) The main thing for us - like supermum says is the potential to delay or stop the need for invasive surgery at a later date.

One of the main turning pionts for me was reading (somewhere) on the Cerebra website from an adult that they wished they had been offered Botox as a child as it could have stopped them from needing so many ops and being in pain as an adult. Hope that helps (sorry if its abit jumbled - multi tasking!

Not read all the posts so I'm probably repeating what has been said but this is our experience. DS now just 6 born 11 weeks prem with spastic diplegia. He's had 4 lots of botox, first 2 6 months apart then a years gap and then about 8 month gap. Boot casts on both feet after the last two sets of injections.

I've always been very positive about Botox, we've seen a big relaxation and usually managed to get some long ish term gains out of it. Lots of physio is vital in the weeks after the injections although best to wait 1 - 2 weeks for the botox to have time to take effect. I have however recently been talking to a v experience consultant who told me that Botox does cause long term muscle wastage, ie some of it does not 'grow back' and after 4 bouts we have noticed this, DS's strength is not quite the same as it was. We are therefore no longer doing Botox even though it has had positive effects - he now needs what strength he has in his legs more than the opportunity to gain 'flexibility' during a time of reduced spasticity.

DS has always had an easy time with GA's, back at nursery or school the next day - even doing very intensive physio with the paster on. The casts are meant for walking on (with a special shoe) so that gives more physio opportunities as the weight of the cast helps with resistance type training.

Hope all this makes sense, DS just back from school and I should be playing with him!

OK just read a bit more of other peoples responses. Yes, there is a very minor risk of seizures, as far as I am aware the risk only lasts the length on time the Botox is in the system - ie 6 months at the very most, and tbh we've found it's more like 4.

Also for us DS became aware that his legs were separate entities after his first Botox (at about 2ish) - he could move them - this was amazing for hi and that knowledge stayed after the Botox wore off. After his third, while wearing his casts he took his first independent steps. These are major steps forward that it might not have been possible to get without Botox.

I'd like to think that it's put of the need for orthopaedic surgery but DS has worn day and night splints since he was 2, done loads of physio etc and he's only just 6 and we are looking seriously at surgery within the next year...

Sorry to bring a negative view... my daughter (quad spastic/athetoid cp) had botox to hamstrings about 4 years ago. She began to get agitated with the sedation, and the actual botox injections were terrible as we were basically holding her down. Over the next 24 hours her condition deteriorated as she had a "global response" to the botox, resulting in "loose" muscles all over her body, preventing her from swallowing, holding her head up, basically doing anything. She could not eat for a week, and took over a month to recover from the muscle weakness, rash which developed later, and finally abcesses under her tongue - all signs that her body was fighting a poison. So, we did not gain any benefits as we lost the physical therapy window to 24 hr care. Her doctor advised us that she had had a reaction to the botox and that we shouldn't try it again... we have since changed doctors . We live in the US so our whole experience could well be different to yours - eg the treatment was given in a doctor's office, not a hospital. I am sure it worls differently for everyone, and just wanted to share that it isn't always positive.

Thanks for all your replies, positive and negative.

We went ahead and Sam had his botox yesterday & now has his cast & little sandal - very cute! I now have some other questions or rather Sam has & I told him I would post on here to see if anyone can answer them.

So his questions are

1. What happens if we go out & it's raining? (Worries that his toes will get wet/cast will get wet)
2. How do I go in the bath? (Again his worries about it getting wet - I would also like some tips about this)
3. How do they take the cast off? (He's a proper little worrier, think he's a bit worried about it being cut off!)

Thanks
Kitty x

I know about plaster of paris casts from being an A&E nurse rather than re botox. (also know about botox as DGS has CP but is more stranded jellyfish, so botox not in the picture thank heavens)
If it is a bog standard white cast and not a fibre glass one (kids usually get to choose colours) - no wetting as it melts. Fibre glass also keep dry (no water inside near the skin) but ok in light showers.
Removal is usually with a special saw which doesnt cut the skin but looks and sounds terrifying. I hated using it even though I knew it wouldnt cut into the skin! For children though they can use plaster scissors which are much less daunting, but as far as I know the fibre glass needs the dreaded saw as its very rigid. Plaster room staff are usually very good with children. DGS recently had POP cast for his splints, my ears have only just stopped ringing even though the man was lovely!

Hi Kitty, glad to hear it went well! My dd2 had a cast for a broken wrist and they gave us a kind of "shower cap" for her arm to wear in the bath/shower - just an elasticated plastic bag, really. For removal, they used a saw but she was not freaked out by it - the main noise seemed to come from the attached vacuum cleaner-type machine. (She was 10 at the time).

Thanks for the replies - will be using a plastic bag & have also thought of getting the baby bath out so he can put his leg out - don't DS will be too impressed as he is 4!

He hates loud noises so the attached vaccum cleaner type machine doesn't sound good, he's not frightened of the hoover at home but hates hand dryers so at least I can warn him it will be noisy.

hi kitty0608 so glad to hear the botox went well. my poor dd didnt have a bath for the 6 weeks the casts were on but she was in bilateral casts. as dd had a soft cast we cut it off ourselves but i dont think i would recommend this as it was a long job but it saved us travelling 150 miles to have it done otherwise. hope you will notice the difference when the cast comes off as we notice a big difference in our little lady.

Well did the bath tonight, couldn't find the plug for the baby bath so he got away with going in that!

The bath is big & deep so managed to get round it with a shallow bath & the step for the toilet to put his leg on with a plastic bag round it. He was good as gold - even managed to wash his hair!

Fingers crossed for the cast coming off now

Kitty x