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madapor (Dopamine)

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stephgreen
stephgreen Community member Posts: 28 Listener
edited May 2014 in Cerebral palsy
Hi just wondering if anyone has had any experiences with the drug madopar (dopamine). my little boy has dystonic cp and hes having a trial of this. If he responds to it this can make his movements easier. He has only been on it for 2 days on a small dose. Would be great to hear from anyone who has found it a success. thanks steph
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  • renacahill
    renacahill Community member Posts: 145 Courageous
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    We have not had personal experience of this medication, but my grandson has athetoid CP and I have wondered if this would help him as he has difficulty controlling his movements.

    Did your neurologist or the paediatrician prescribe. Our paed is rubbish frankly and insists he still has spastic quad CP despite his fluctuating tone and no tightness. She congratulates us on the stretches we do...we dont do any!!

    Please keep us updated on how the trial goes, we are very interested, and we really hope you have a good result with the madopur.
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  • stephgreen
    stephgreen Community member Posts: 28 Listener
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    Hi there i have read alot about dopa when i first found out Jack had possible cp. They are trialling him on it because he is showing early signs of dystonia which is quite unusual. Have u asked the doc? I have read the child has to meet criteria to be trialed on it!! I hope they let you try it as then you can forget about it and know that you have tried. Let me know how you get on. It can take up to 8 weeks to kick in and the results can be dramatic, but trying to keep an open mind.
    take care steph x
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  • renacahill
    renacahill Community member Posts: 145 Courageous
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    Will keep that in mind about asking when the next appt comes round not sure if its neurologist or paed.

    Dont think my grandson has dystonic movements, just very poor control of his arms mainly, but apart from a bit of finger twidling I dont think dystonic as such. We will certainly check though, as you say it may be worth a go just to see what would happen, but if he doesnt have those movements it probably wont work anyway.
    cheers
    kate
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