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Old 03-29-2007, 05:07 AM   #1
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HELP! Botox no longer working as well - where to from here???

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

 
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Old 03-29-2007, 08:23 AM   #2
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Re: HELP! Botox no longer working as well - where to from here???

Hi and welcome!

I'm 21 with CP. I'm sure parents can give you more advice than I, but I had the SDR when I was younger. In my opinion this sort of treats the cause, whereas baclofen pump treats the symptoms. The baclofen pump has to be replaced which means multiple, sometimes risky surgeries, but on the other hand I had to have multiple lengthening procedures even with the SDR (perhaps I started off more severe than your son, though, as I've never walked independently). Hope this helps a little!

 
Old 03-29-2007, 08:25 AM   #3
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Re: HELP! Botox no longer working as well - where to from here???

Oh and another thing, lengthening isn't always permanent, especially as muscles are growing.

 
Old 03-29-2007, 04:08 PM   #4
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Re: HELP! Botox no longer working as well - where to from here???

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.

 
Old 03-30-2007, 12:33 AM   #5
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Re: HELP! Botox no longer working as well - where to from here???

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!!

 
Old 03-30-2007, 04:42 AM   #6
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Re: HELP! Botox no longer working as well - where to from here???

thanks so much for your messages - I have to say that I showed these replies to my husband and we both agreed that there are some very mature and fantastic 21 year olds posting here!! We only hope that our son turns out like you guys when he grows up!
My husband and I sat dowm today and wrote a plan of what we want for Daniel so will let you all know how the meeting goes, plus a plan B of moving countries!
Karimsmum - I would LOVE to discuss things with you in more depth, particularly since we are considering moving to Aussie to get better care and for lifestyle reasons ( I have always craved warm weather ALL of the time!)- I know the gold coast well as have holidayed there twice a year for the past 3 years and we have a long term plan to move there but are not sure exactly where is the best.
I dont want to tie up this forum asking you questions and comparing, is there no option to pm someone personally on this forum eg in other forums where I can do this I can click on the persons name and send them a message?? Any ideas anyone, and thank you for your feedback
Linda

 
Old 03-30-2007, 06:46 AM   #7
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Re: HELP! Botox no longer working as well - where to from here???

Hi,
Not sure how to do that either, but am quite happy to keep posting. Yes the weather here is good, I still miss home. I was in two minds when we got the diagnosis which place would be best for my son. I think the support services are good here if you know where to go and be really vocal in your needs. For instance, the cp league pays a carer to come to my home and look after my son for a few hours a week to give me a bit of time off. It is only 4 hours but some weeks it has made the world of difference to my sanity. But you need to ask for things like that, they won't always offer. The cp league on the Gold coast has just formed a new early intervention team that works with children aged 0-8. They are very good if you need to call up and ask questions. Not sure what the therapy services are like back home but if you want an outline of what they are like here let me know.

 
Old 03-31-2007, 01:23 AM   #8
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Re: HELP! Botox no longer working as well - where to from here???

We have good carer support here ie 1 hour every morning and 2 hours every evening but have fought for it as had 3 children under 2 years old for a while!!! (Daniel is a twin and when they were born we had an 18 month old!!) Things were pretty stressful then, they are getting better. Othere people here forego this carer in the home and get carer relief days which are paid out to relatives/friends etc at a nominal amount in half or full days.
Where was home originally for you??
We also have lots of qstns about schooling but I am not sure if your child is at school yet. Here, most children are mainstreamed with support - we tried this with Daniels twin and lasted 11 weeks - things were so bad the teacher was getting me to come in to walk Daniel 20 metres between classes as she wouldnt do it and wanted the wheelchair for Daniel (even though we dont use it at home). Daniel is very chatty and understands everything ie started reading words etc, counting, about the level of a 4-5 year old at the mo but the teacher was telling the teacher aide in front of him to just put him in a corner and do a puzzle with him as it was a "waste of time"!!!!
Consequently, we moved schools to a special conductive unit attached to a mainstream school and this has been the best decision of his life thus far - they work with him everyday in every area ie stretches, walking, exercises, reading, computer work and fun!!! I am wondering if they have conductive in brisbane?? I know I have heard of it in Aussie but not sure where. And if they dont, what type of schooling is there for these types of kids that need lots of physical exercise?? Is there special schools or attached to mainstream or are they made to go in mainstream classes?? If Daniel was here at a mainstream school he would be forced into a wheelchair by now, and they do no physio in mainstream schooling.
Thanks in advance for your advice

Linda

Last edited by moderator2; 04-02-2007 at 09:09 AM.

 
Old 04-02-2007, 06:31 AM   #9
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Re: HELP! Botox no longer working as well - where to from here???

Hi Lynda,
Anyway, I had both my children in Oz, we moved over 6 years ago. Over here they try to mainstream as much as possible and only tend to go to special schools where the child cannot communicate or has severe learning disabilities. Most public schools have an SEU attached, (special education unit) and they get the help they need mostly from there. Most SEU units have visiting pt's, a permanent SP and OT. In the past certain schools specialised in certain disabilities ie Elanora Primary specialised in Autistic children etc. Now the govt has mandated the children go to their nearest school and any disability will be catered for at any school. If the child needs lots of assistance it is possible to get a teachers aide for them to help out at specific times. I know there is a school in Auckland that specialise in children with cp and there is also the same available in brisbane. Have heard the Auckland one is better, I know a family that moved home so their child could attend there.
They don't do regular physio at schools but the physio is there to help the student more in an educational sense. A lot of families, mine included, seek out private physios. The govt health system medicare pay for 5 sessions a year and you can also get post op physio brokered out to private physio. The cp league on the coast has just set up an early intervention team for 0-8 year olds and offer pt ot and sp sessions. They can also act as a mediary between the school and home.
Hope this info is useful. Any more questions, just ask away.
Cheers!!

Last edited by moderator2; 04-02-2007 at 09:08 AM.

 
Old 04-03-2007, 03:09 AM   #10
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Re: HELP! Botox no longer working as well - where to from here???

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!

 
Old 04-22-2007, 06:30 PM   #11
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Re: HELP! Botox no longer working as well - where to from here???

KarinsMUM - can you give me any idea of any good schools that would cater for my son in Brisbane? I have just booked a trip and am coming over in 3 weeks (to Brisbane and the Gold Coast) so thought I might check some out? We would possibly look at Brisbane as per husbands job so need to start somewhere! Any ideas??

 
Old 04-25-2007, 07:35 PM   #12
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Re: HELP! Botox no longer working as well - where to from here???

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.

 
Old 04-25-2007, 07:38 PM   #13
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Re: HELP! Botox no longer working as well - where to from here???

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

 
Old 04-25-2007, 08:03 PM   #14
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Re: HELP! Botox no longer working as well - where to from here???

Hi Karimsmum - have been searching but can only find the info below - do you possibly have a link to the case study?

The family raised an incredible $100,000 to bring American neurosurgeon, Dr Mary-Beth Dunn, to Australia to undertake the operation on Oscar and two other children. The Mulcahy’s have been instrumental in organising Dr Dunn to visit Australia a further two times to perform the same operation on other children and the groundbreaking surgery is now available in Brisbane where two children have just undergone the operation at the Royal Children’s Hospital.

 
Old 04-26-2007, 04:22 PM   #15
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Re: HELP! Botox no longer working as well - where to from here???

Hi Karinsmum - I found this article (on page 13) of the first case done in March 06 in Queensland by Dr Mary Beth Dunn - is this what you read?
[url]http://www.health.qld.gov.au/news/health_matters/2006/hm_july_06_web.pdf[/url]

 
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