Parents, carers and disabled parents
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Bacoflen

ripleyripley Member Posts: 5
Advice to parents

Replies

  • ripleyripley Member Posts: 5
    Hi

    Our 4 year old daughter has severe CP affecting all 4 limbs. She has low tone in her trunk and high tone in her limbs. She is totally PEG fed.

    Recently we have been investigating whether taking Bacoflen to relax the tension in her legs and shoulders might help - but are worried that it may make her trunk tone even lower. I have also heard of unpleasant side effects of Bacoflen.

    Has anyone any advice?

    Many Thanks
  • libbytlibbyt Member Posts: 30 Courageous
    Hi Ripley

    My son has high tone in his legs (spastic dipegia) and low tone in his trunk. He has tried baclofen but because it is systemic it made his low tone even lower. He struggled to sit up straight and dribbled.

    Children with mixed tone are a nighmare to treat. Joe is now 16 and although his low tone has improved in his trunk, his high tone in his legs has got much worse.

    Children with cp are all so different, it's worth trying anything and everything because they all react differently.

    Good luck

    Libby
  • imogen37imogen37 Member Posts: 61 Listener
    Hi Ripley,

    I have a 2 year old (twin) son with severe spastic quadriplegia. We were on an increasing dose of Nitrazapam and the doctors were looking at Baclofen as the next step. I was not keen, as baclofen has loads of side effects. I understand the issue of having both high tone and low tone in a child because my son Marten could go from rigid stiffness to being totally floppy in seconds.

    Luckily, we found a home based therapy called ABR (Advanced Biomechanical Rehabilitation) and started this in January. We've had loads of advances which I could go through one by one, but the biggest are that today Marten needs NO DRUGS whatsoever and isn't in pain because the therapy has stopped his spastic muscle contractions completely. We're so impressed that we're working with the main organisation in Belgium and will bring the treatment to the UK in March.

    You can find out more by visiting www.abrscotland.com

    Hope this helps.
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