If this is your first visit, check out the community guide. You will have to Join us or Sign in before you can post.

tetrabenazine

TripletmomTripletmom Posts: 37Member
edited May 2014 in Cerebral palsy
My son is nearly 3 with quad cp, he is doing well at physio but is having muscle spasms and cryings out with the pain. Sweats lots to the point i have to keep changing him? and movements where he will hit himself in the face or his right arm flings up in the air.

His consultant wants to try tetrabenazine?? Has anyone had experience with this? if its going to make him to sleepy he will be no good during physio and i dont want him a sleep all day either.

Replies

  • imogen37imogen37 Posts: 61Member Listener
    Hi Tripletmum

    I'm a bit late replier,but never mind...

    It's tough being a mum to a child with CP, isn't it? My son is now 2 and he too has quad CP. Thankfully he is doing OK; we are doing Advanced Biomechanical Reahbilitation with him. You can check it out from www.abrscotland.com or www.martensprogress.co.uk

    I don't have any experience with tetrabenazine personally. Would that be your son's first medication? If yes it's maybe a bit odd choice as tetrabenazine does not appear to be in pead British National Formulary. I'll have access to adult BNF on Thur, will check it out in there.

    Merry Xmas and hope santa is good to you!
    x
  • imogen37imogen37 Posts: 61Member Listener
    Hi

    have checked tetrabenazine in adult British National Formulary; it states that it's mainly used for Huntington's chorea, and only useful for a proportion of patients; may affect performance of skilled tasks; side effects incluse drowsiness,gastro-intestinal disturbances, depression, hypotention, extrapyramidal dysfunction.

    hope that helps.
    x
  • MazBMazB Posts: 9Member
    Hi Tripletmom,

    My daughters paediatrician has suggested tetrabenazine too, but am struggling to find much in the way of useful information about it, especially from people who have actually had experience of using it, have you managed to find much else out?

    Also, just wanted to check if you used to go to Steps in Shepshed, not sure if you are someone I may know?

    Marianne (mum to eve)
    xx
  • TripletmomTripletmom Posts: 37Member
    Hi Imogen,

    Thank you so much for reply, sorry late getting back to you. He started the drug tuesday he is on a months trial says me:) as i have said if there is no difference i cant see the point of giving him drugs. No he is already on diazapam once a day before bed due to muscle spasms.

    Thanks again will keep you updated on how things go xx

    Hi Marianne,

    How funny yes its me kelly! Think having triplets gave me away :). How is eve and how is the little one? the girls at steps said you had a little girl?? congrats. xx
  • imogen37imogen37 Posts: 61Member Listener
    Hi

    Would be interested to know what you think of tetrabenazine after 1 month - would you let me know? be careful with Diazepam (or anything else ending with -zepam), the therapeutic effect only lasts around 3-7 days, after that you get withdrawal symptoms and it's highly addictive. You would have heard of "blues" you get on the black market - it's the same thing.

    Hope Daisy is doing well

    x
  • MazBMazB Posts: 9Member
    Hi Kelly,
    Eve's doing well at the minute, she's at school full time now, looks so grown up in her uniform!!
    Yes we had a little girl, Daisy, arrived a couple of weeks early but doing really well.
    How's your new arrival? What did you name him? Congrats to you all too.
    We have been trying to find out about tetrabenazine too, but useful information seems very limited, have found 1 post which called it anti-wriggle medicine which sounds ideal for eve, but worried about side effects. Think we will probably give it a go but not seeing Dr McIntyre again until April.
    Also, I saw you posted about kinesio taping, can I ask who you see for that and what it costs, sounds similar principle to Eve's Lycra suit but that caused so many problems with her tummy we had to stop using it.
    Anyway, hope you're all keeping well.
    Marianne xx
  • MazBMazB Posts: 9Member
    Thanks, am waiting for letter detailing how we start tetrabenazine so may be a few days before we start but will try to remember to post on here once we have been using for a while xx
Sign in or join us to comment.