Botox for Cerebral Palsy.

[HangingbaublesofBethlehem]

dd has spastic diplegia and is 2.9. She is getting increasingly stiffer and in spite of me doing more stretches she is waking up in pain each night and also when walking with her Kaye walker her gait has really deteriorated. I talked to physio today and she told me there is nothing I can do apart from more stretches and to give her calpol.

I've been reading about Botox treatment and dd looks like a good candidate. I have read that it works well on dynamic tone rather than high tone all of the time, It also looks to be good for 'crouching gait' caused by tight Hamstrings which dd has.

I am thinking of trying to get an appointment with the Paediatrician to ask about it. Does anyone have experience of the whole process? Dd tends to slip through the net as she does have a little mobility when using the Kaye walker but I really feel if there is something more that could help we have to try it.

are you on fb?

sorry posted to quick. just asked as I have a rl freiend on there who's son has had botox, so could have put you in touch.
dd has never had it, but another freinds dd had it with great sucsess.

just posted on FB.

My Ds1 has had Botox five times. He has spastic diplegia CP. He was given it at the age of 5. Its was amazing, his muscles relaxed and he didn't have the crouching gait while it worked, after the 4th time we saw less effects but he was given one more lot to try before GOSH decided on surgery. We managed to hold off surgery for 5 years using Botox.

We were seen at GOSH for the botox, and they are great. If you want more info email me at mieow79 (at) hotmail (dot) com.

I would definately try anything before surgery. My friend H has spastic diplegia and has had a lot of surgery which has now seriously affected her mobility. This is just one case though, I'm sure surgery has done wonders for some, but I guess it's best to try and avoid it for as long as possible.

dd has had botox 4 times now. She has spastic quad CP. She can't sit or walk but its keeping her adductors loose enough to keep her hips in place and allows us to extend her wrists and place them in wrist splints. Its to hold off surgery mainly as she will never sit or walk.
Done at Bristol.

mine has had it 4 times, what can i tell you?

the friend I have put you in touch with, is quite hand to talk to , her ds is 16 and can talk, so you will get his point of view.

thank you all for your messages. Do you know anyone who has had Botox at such a young age? (dd not 3 yet) Also will they consider it for someone like my dd who is considered 'mild'. My main feelings are that she is getting quite fast with her Kaye walker but her gait is getting worse and worse and she is really tight in the hamstrings. She doesn't toe walk too much but her feet cross and turn in a lot. From what I've read the Botox would give her a chance to build up a bit of strength in her legs and improve her gait. I have asked for an appointment with the paediatrician today as we haven't seen anyone since July and are not due a review until April. The receptionist did the usual snooty thing so I'll see how I get on.

I'm interested to see how the Botox affected your dc's (positives and negatives) and also did you have to fight hard for it or were you offered it? At the moment we have had nothing that I haven't had to fight for - wouldn't have AFO's, Kaye walker or have had her MRI if I hadn't done the research and asked for it all.

2Shoes, thanks for putting me in touch with your friend. I'll have a chat to her later on hopefully. I now have to help dh tidy up a bit, can't really justify being on MN when I can't see the lounge floor for toys.. .

Sorry, thought of another thing. Is Botox done in many places or is likely that we'd have to travel to a bigger hospital? also did they do lots of tests and gait analysis etc before deciding? thanks.

Hi! Yes we have had botox, 1st time in Feb when DS was 2.11 and then in October. DS has spastic diplegia, mild to moderate and toe walks massively. We noticed major improvements after both times and now nearly 10 weeks after the second lot we are doing (private) intensive therapy with good results. We had no porblems getting it and it was done under a general at our local hospital as day surgery. We were offered it but are in a fantastic area and have been offered everything we need - so far!
We have exactly the same problem with the Kaye walker - increasing speed and decreasing gait and are now trying with some considerable success to move to using tripod sticks when he is indoors - these have taken a lot of work but his speed is increasing and his gait is excellent when using them.
Ds had calves and hamstrings done on both sides and groin on one side the first botox but just calves and hamstings this time.
Any more questions feel free to ask!

ds2 had botox , he has spastic diplegia cp too, and whilst it did relax his muscles, it wasnt enough

he is 7 and cant stand unless in a frame

Oh yes - negatives - DS tends to 'frog' his legs after botox so his crawling deteriotates - he's still fast though! This is more than made up for by the improvements though.
A word of warning - Botox by itself is no good, you need intensive physio afterwards to see any lasting effects once the botox has worn off. DS is getting very difficult about doing stretches and 'therapies' with me so we now supplement the 'intensive' one hour every week for six weeks the NHS offers with as many different therapies as possible.
Have lots of info on a fantastic one that will probably be beneficial for your DD but it is expensive - will post more if you want me to.
I think that botox probably works very well with the mild / moderate cases where the physio afterwards is augmented by the childs own mobility - does that make sense?

Thanks Hairy - it sounds like your ds is similar to my dd. At the moment we are getting physio every 3-4 weeks, our physio has just returned from a 2 month Bobath course and is really enthused so trying to see dd a bit more often than usual. We also go to a Conductive Ed centre once a week for 3 hours which would also help post-Botox it seems. Right, so first battle is to get an appointment with the paediatrician then we'll take it from there.

I'm thinking a lot about my dd at the moment, I am trying to get them to start the statementing process but keep getting fobbed off. Also still battling to get social services to come and assess us, all I want is a few rails for the downstairs loo so she can wash her hands etc.; I'm also thinking a lot about her transportation, she goes to a little nursery and either uses her kaye walker or crawls but when she starts pre-school in April she'll be in with all of the big 3 and 4 year olds and I don't know how she'll feel about crawling and if it will safe with so many children about. No-one has even mentioned a wheelchair but it is obviously going to be a long time before dd will walk on her own (we've been told it will happen but don't know when). When she has really stiff days she can barely take any steps at all. I don't know how she would feel as she sees herself as a walker. It's hard at the moment, she wakes up crying with pain in her arm and leg and begs me to make her better and there's not a lot I can do. I guess I've answered my own question - I need to at least find out about Botox to give my dd the best chance of mobility and hopefully also ease some of the tightness that wakes her up at night.

do you go to the conductive ed place in Putney - in which case I think I've met you - at summer school.
Keep pushing with the statement, there are legal time frames in which certain bits have to be done which helps move things along, it's not my area of 'expertise' but others on here know lots about that. At nursery we have found that Ds1 uses his frame outside for playtime and in certain (pre arranged) areas of the hall and his sticks in all others. He needs his 1:1 for his physical safety though which is where the statement is needed. He is only allowed to crawl in a very small area. All this has really helped his stick walking and his confidence.
We have only (at 3.9) been referred to wheelchair services with an appt in the new year - I asked for this though as he is now growing out of his pushchair, especially when he has his AFO's on. Not yet clear on how to manage both DSs with a wheelchair though!

No, not Putney, we go to the Rainbow centre in Fareham. It's funny because I was going to ask you the same thing as you remind me of someone I've met there! I'm going to get back on the phone on Monday to the early years woman as we need to get this sorted. I think because dd is quite chatty and appears articulate they don't think she will need a statement but as you say she needs help to physically access the curriculum. she has a lovely 1-1 in the nursery at the moment but even so she had a wobbly moment and took quite a knock to her head today as no-one else seems to get that she can be really strong on her walker one day and the next be really wobbly.

dda first had it at 3 or 4 (I can't remember now!) and had the lastest lot 2 weeks ago. I think it's fantastic, and helps her no end.

i am new at mumsnet. my son is 4 and is a mild spastic diplegia. he cant walk or balance, crosses his legs and tip toes while using his walker. any recommendations of doctors, therapists,schools and mode of treatment as i am new in this country and not aquainted to the places yet. i am living in north london.

we see Dr Carr at Great ormond Street in the Locomotor clinic. She is great and her team is very friendly and know my son by name, we have been under their care since he was 3 and he is 11 now.

I would ask for a referral to Great ormond street hospital, they are one of the best hospitals and they know their stuff. My son had surgery at GOSH in may (his left leg was very tight) and his foot is actually flat on the floor for the first time(he tiptoed walked too) He has lost his crouching gait and looks taller now, as they released his hamstrings and tenons

i have got mixed opinions over surgeries. i have heard that surgeries are not sucessfull as they get reversed as new muscles grow, the child gets back to the original position (maybe not as worse but to some extent)how much time does it take to recover from surgery and start walking? and what age is suitable for that

my son is 11, we put off surgery for years for the same reasons. My son is mobile, and he started walking within a few days after the surgery. He had full leg plaster for 4 weeks (to give a good stretch) and then below the knee plaster for 2 weeks.