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Please help do i give my daughter BACLOFEN !!

Mandy31Mandy31 Posts: 5Member
edited June 2014 in Parents and carers
My daughters CP effects all 4 limbs, she's nearly 4 years old. Her Specialist feels she will benefit from the oral drug baclofen. But after reading the long list of awful side effects i am so unsure and so worried for my daughter and how it will effect her.
Shes doing so well at nursery her speech and understanding has improved so well the passed few months also she is now toliet trained.
I am so worried that this drug will effect all this and most of all she wont be her true self.
Are there any parents who have any experiances with Baclofen ?
Thank you

Replies

  • Mandy31Mandy31 Posts: 5Member
    Hiya, thank you so much for sharing your positive experiences with me. Your daughter is doing very well even tho its early days for you all. I have spoken to her physio and he said she will benefit from it. So i think we will give it a go shortly when we are all at home to keep a close eye on her.
    Many thanks again your experience has helped me so much.
    Mandy x
  • b8sb8s Posts: 33Member
    Hi,
    my daughter has 4 limb cerebral palsy, and is just over 3 1/2yrs. Her speech is also developing well, and her understanding is good. Four weeks ago she started a low dose of Baclofen 3 times a day, we had to increase it slightly, but it is still a very low dose for her age. she has had no side effects, and is so comfortable now. After two weeks on Baclofen she was able to sit up for 2-3 mins unsupported, and can now manage up to 20 mins, previously her hips and legs had been so tight she could not place her bottom flat on the floor.
    I also agonised over whether to give it to her, and would still worry if we had to increase her dose considerably, but our experience so far is completely positive and just seeing her sat up on her own makes it completely worth it. Also her speech has improved because being comfortable makes it easier for her to concentrate.
    Hope this helps, it is still such early days for us.
  • loredana8loredana8 Posts: 1Member
    Hi, My son is older - nearly 20 now with spastic quadraplegia cp - and he started taking baclofen a couple of years ago. It has made so much difference to him as his spasming had got quite bad and was really painful. He plays powerchair football and was finding it difficult to relax so the spasms were getting worse and stopping his enjoyment of the game. I think stress brings on more spasming for him so exam time was also difficult. He started on a low dose and has gradually increased it a bit, although he doesn't take as much as one of his teammates! He does not appear to suffer from any side effects, although he was a little more sleepy for the first couple of weeks of taking it.
    Hope this helps
  • Mandy31Mandy31 Posts: 5Member
    Thank you so so much for sharing your experiances with me. My daughter has been taking it for 3 days i know its still very early days but touch wood shes ok. Shes only on 2.5mls once a day then in 11 days it will go up to 5mls.
    But i would like to thank you all again.
    Mandy x
  • rachelalgerrachelalger Posts: 3Member
    hi mandy

    my name is rachel i have a son who has quad cerabral palsy he is now 6 and has had baclofen since he was 18 months,he now has a inserted baclofen pump put in at nottingham,he has improved so much with it he has never had side effects from it,and for our son it was the best thing we ever done we can now change his pad and he is so much more relaxed,he is wheelchair dependant and it has made life so much better for him and us,it's your decission in the end.depends how severe she is,we try do alot of intensive physio for him to also help him.
    if you want to ask anything else please ask.

    rachel
  • JDWilsonJDWilson Posts: 90Member
    My Daughter is 11 and has been taking Baclofen for YEARS she is on 50mls a day. I was worried about her taking medication for years if it was doing no good. We reduced the dose with support from the hospital and found her Pain increased. She has Spastic Diaplegia and the physio reported tightenings in her legs We upped the doseage the pain didn't go but is more manageable. I have heard bad reports from others about affecting moods etc But My child was VERY DETERMINED before she took this medication So we carn't blame this for it. I hope this helps You have nothing to lose If it doesn't agree with your child She will be taken off it They tend to monitor any changes at first anyhow and you can say If you find something you are not happy with. Good Luck X
  • Mandy31Mandy31 Posts: 5Member
    Hi Rachel, so glad to hear its working out so well with your son.
    Its day 5 and we can see its helping with her walking she can take steps with alot of our support.
    But now her steps seem very free, no side effects as of yet.
    I am so pleased so far,we do alot of physio (brainwave) program which is very intensive too.
    there has been talk of this pump being fitted she has a 50/50 chance of having it fitted. We live not that far from nottingham. Thank you very much Rachel. Mandy

  • cilcilcilcil Posts: 11Member Connected
    mandy i was scared too istarted 2wks doctor started too high 15mls he stoppd smilinglooked dased cut dose to 10 mls back to happy self just noticed a bit more tremor in legs he is 12 4 lims quad





    cilcil
  • cilcilcilcil Posts: 11Member Connected
    hi mandy how is the baclofen goinghow much is she taking now have yu any side effect
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