New to this - recently diagnosed

Why I created this forum

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Joined: Wed Nov 12, 2008 2:31 am

New to this - recently diagnosed

Postby karina » Wed Nov 12, 2008 2:51 am

Hi Everyone,
So i'm happy i found this website, i'm really hoping i can read some nice stories as i'm a bit over whelmed with all of this.
My daughter is 19 months (10 weeks premature) and has recently been diagnosed with diplegia cerebral palsy effecting both legs. She is unable to sit, crawl properly or walk but we are trying to keep hope for her future. Early next year we are starting botox and Novita Children's Services are coming out to the home for the first visit this Friday.
Has anyone got any little ones in the same boat?
Have your little ones ended up walking?
Our doctor say's he suspects our little girl 'might' sit and walk but nothing is definate and if she sits will apparently be the biggest indicator as to whether or not she walks.
To be honest it's all been so over whelming, i really fear for the future and it's all a bit hard to take in.
Thanks so much for listening xxx
p.s. i'm in Adelaide, Australia.

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Cerebral Palsy & Botox Injections

Postby admin » Tue Dec 02, 2008 9:49 am

Hi Adelaide,
Welcome to the forum. I'm glad you are finding it useful. I have not tried Botox and do not know anyone who has. When I turned 18 I went to the doctor to see if I would benefit from something like that. I was told that since I was older and my muscles were more fully developed that I would not benefit as I would have to receive large doses of Botox and go in on a rather frequent basis. The doctor did mention that they have seen great results in smaller children with smaller developing muscle mass. It would not hurt to give it a try. If you child does benefit from the Botox then she will probably be a great candidate for a Baclofen pump when she gets older. The good thing about that is that you only have to get it refilled about every 6 months instead of having to go every month or 2 for Botox injections.

I know it's a lot to take in but try to get rid of your fear. I've gone through a lot. The doctors told my mother that I would never walk but I get around fine and only use crutches every once and a while. Hang in there ;-)


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Joined: Fri Dec 05, 2008 11:59 am
Location: Scotland


Postby hazel » Fri Dec 05, 2008 12:08 pm

I came across this site whilst browsing. I live in Scotland and my youngest child has dyskinetic quadriplegic cerbral palsy; she is 10. Hope has had botox in the past which was very beneficial. She now has a baclofen pump(intrathecal) which is great. She had to wait a while after the trial; the pumps are adult size so you have to be big enough. all the best in your decision

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Joined: Sun Nov 08, 2009 6:47 am
Location: Northumberland, UK

Postby Ellie'sMum » Sun Nov 08, 2009 7:27 am

Hi, just wanted to say i'm new and i also joined as i was feeling really alone. My daughter has a mild form of CP but they have discussed botox to reduce her hand's tightness.

Hopefully we'll both find the support here we need :)