Discussions that mention botox

Cerebral Palsy board


Hi all!!
Firstly, I am absolutely rapt to have stumbled across this forum!!
I have lots of experience and questions too, but since my first post I have a burning issue that needs advice/experience from you great people!!

I am from New Zealand, with a 6 year old boy (one of twins) with spastic CP. He had a grade III and grade IV intraventricular haemorrhage at 9 days old (really rare so late post birth), plus multiple other problems eg infantile spasms, meningitis etc etc and I still can't get over how well he is doing despite this amount of damage!! .

Anyway, we have had about 6 rounds of botox over the last 2-3 years. Each time, he has taken some steps and walked on his own only to lose all the confidence as the botox wears off. He is extremely tight in achilles/hamstrings and toe walks. The most frustrating thing is seeing him make all the progress then as the botox wears off every time he stops taking these steps (dont get me wrong, we MAKE him walk by himself with a helmet, very unsteady but attainable and sooooo much more confidence after recent botox. He has only once tried to take off by himself). This has been going on for TWO YEARS!!
I have asked his orthopaedic surgeon about surgery a few times, and asked to be referred to a gait lab (different city but still do it in New Zealand) only to get put off. He also told me my son was a good candidate for SDR but said they dont do it in NZ and that was the end of that!
We have recently had another opinion who said possibly Baclofen trial and definitely needs something like multilevel surgery.
We have an appt with his multidisciplinary team in a few weeks to discuss all the options. We have a physio who is going to be present at the meeting state that because my son has a strong determined nature he will not be a good candidate for surgery as he wont cooperate with rehabilitation (she just doesnt know the distraction tools like we do! I am afraid she is going to put a kywash on it all) I also need to know what the rehabilitation after SDR or multilevel surgery involves?
We actually would just like to start by getting to the gait lab so they can do a proper analysis on my son.
Unfortunately in this country different cities do things differently ie the opinion we got recently was from the city that does the gait lab but we dont live in that city!
We have even considered moving to Australia to seek better treatment so would be keen also to hear from someone in Australia about services there too.

Please, does anyone have any experience in any of the above?

Daniel does not often use a wheelchair (only once the botox has worn off for extremely long distances), and not even a walker as my son prefers to hold our left hand with his to walk, and at home is mobile from high kneeling (actually bunny hopping! and totally ignores his walker)
He is at a Conductive Unit where I have seen and videotaped him walking every day by himself for quite a distance ie 50 metres or so! But still at risk of falling and does fall, but this unit is fantastic and so dedicated to getting him up and moving and he loves it there.

So sorry this did turn out to be a novel in the end but hope to contribute more as time goes on too.

Many thanks and god bless you all
I'm also 21 with CP. I've never had SDR (and now I can't as I've had too many ortho surgeries) but I have had several lengthenings. Hamstrings, achilles, etc. Most of the surgeries worked pretty well for me, however, I have contractures in my right hip, both hamstrings and my right achilles again. As Steffers said the lengthenings don't last forever, but definitely longer than botox!
I feel like when I was younger the doctors were more gung-ho about ortho surgeries. Now everyone seems to be getting botox, baclofen and SDR. It makes me wonder if I would have had success with any of those. I've been turned down for all three recently.
Hi,
hi there from oz, yes they do do SDR here, I was just starting to make enquiries myself for my son. They have a doctor who flies out from the states to perform the procedure at Royal Childrens Hospital in Brisbane. The cp health dept up there is pretty good, we have an appt next month for botox and I was going to enquire then to see if my son is a good candidate. He had a grade 1 pvl and has spastic diplegia. Let me know if you want more info.
ps I do know that post op therapy is quite intense and they can regress quite a bit before showing great improvement, it's like learning to walk all over again. But from what I have seen the benefits outweigh the cons!!
Thanks Karinsmum - well after reading this it appears that Daniel is still in the best place at the moment,schoolwise, bar the surgical intervention he needs. Very frustrating, but will box on - it is great to hear of others and their experience with surgery. We just had our IEP today and all of the goals had been reached mobility wise after the botox last time, only to lose all of them as the botox wore off and we are back to square one!
Am not too familiar with the schools in Brisbane but I do have a contact in the education dept so I can check with her, she specialises in special needs. On the Gold Coast Musgrave Hill, Caningeraba and Elanora state schools all have excellent seu units. If you want to do research yourself all state schools have their own website. You could check under queensland state schools - Brisbane. Also the Royal Childrens Hospital in brisbane that does SDR has a website that has a case study on a girl that had SDR done. She was the first to get it done, that was only in Mar last year. The doctor that flew out for the procedure was a neurosurgeon called Dr Mary Beth Dunn. Am going up to Brisbane tomorrow for my sons botox injections so I may have more info for you after that as I am enquiring too.
Thank you so much - am about to look at that, and may even bypass these schools while I am on the gold coast in a few weeks time. The case study sounds very interesting - am off to go and search for it in case I need to use it for our ortho surgeon and botox review meeting tomorrow - thanks!! Please keep me updated with what you find out, that would be great!!
Many thanks
Probably, not sure which web page I found it on. I went to Bris today for botox, found out that they govt fund SDR here now. Yay for us!! Really we are so backward compared to other parts of the world. They only select a few candidates a year and they have strict criteria for accepting a child to have it done. Not sure if my son will be a good candidate yet, they are suspecting that he might have dystonia.
Yes it's a struggle just to get equipment - I have been waiting for a crocodile walker since Christmas, there is one with our name on it...it is somewhere between here and Denmark!!!
If you want some contacts in queensland, the team at the GC branch of the CP league could be helpful. They might be able to answer some of your questions. Also there is a cp health team at the Royal Childrens Hospital in Brisbane that might be worth contacting. They do all botox, sdr and baclofen surgeries in queensland.