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Therapy's

PhilG111
PhilG111 Member Posts: 14 Listener
Hi everyone I hope you are all well. I would like to ask everyone if they know of any therapy that we haven't tried yet for CP? My son is Quad Cp since birth, and to date we have tried the following:
Stem Cell therapy X2
Bobath
Voijta
Reflexology
Hydrotherapy (when possible)
Physio
All with various levels of success, my wife is determined to see anything works (psychological obsession really, I'm dreading the day I have to tell her that there's nothing left to try).
Anyone else tried anything different?

Comments

  • chiarieds
    chiarieds Community Co-Production Group Posts: 12,265 Disability Gamechanger
    Hi @PhilG111 - I may not directly answer your question, but I would like, if I may, to offer an opinion. I qualified as a physio in the mid 1970s & worked with children with CP. I had hoped to go & train with the Bobaths but this was not possible due to my Mum's illness. I'd already read as much as I could find on neurodevelopment in babies & young children, & the Bobath's work, so adopted their concept in such CP patients. I thought it seemed logical, & it certainly seemed to help; it certainly did no harm.
    Thinking about the Bobath concept has changed, & there's not a great body of evidence to show that it works, unless the more modern approaches (ever evolving) are used. So, dependent on the physio, & their knowledge, whether Bobath trained or not, outcomes may vary. There's now more emphasis on the child's function rather than trying to correct any motor 'impairment.' Goals may be set, but care perhaps needs to ensure these are not just the parent's goals. Home visits by a physio are helpful, as that's in the child's natural environment.
    it has been found that about a third of all strategies commonly used in treating CP don't have a sufficiently medically reported evidence base, & a fifth are ineffectual (Vojta therapy falling into this latter category).
    Hydrotherapy should help, as well as be enjoyable.
    Spasticity may be helped by medication, but this is something you should discuss with a Dr.
    I'll also ask @Richard_Scope for his perspective as he is our specialist CP officer. Thank you in advance, Richard.


  • Richard_Scope
    Richard_Scope Posts: 3,106

    Scope community team

    Thanks for tagging me into this conversation, @chiarieds. Great insight as always!

    Hi @PhilG111, I have undergone some but not all of the treatments that you have listed and lots of surgeries. In my experience, regular physiotherapy and where possible hydrotherapy have been most beneficial. Does your son have regular therapy?

    As @chiarieds has mentioned, medications like Baclofen can be used to control and ease spasticity. You would need to discuss this with your G.P.

    I would be really interested to hear about your experiences of stem cell therapy

     
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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  • PhilG111
    PhilG111 Member Posts: 14 Listener
    Thanks for the replies. I will be quite happy to answer any questions with regards to stem cells therapy.
    I think a lot of the Therapy's successes are down to the individual, or at least the therapist and how determined they are. Sadly my Son is an individual that is determined that therapy isn't going to work on him regardless of what parents want. Ruddy kid ??
  • Richard_Scope
    Richard_Scope Posts: 3,106

    Scope community team

    Sounds very much like how I was! 

    I think it depends on how the therapy and its potential outcomes are explained to him. It's important that your son understands that things like physio and hydro are important to maintain his future mobility. This was never explained to me properly and as soon as realised I wasn't going to be able to walk, I rebelled and essentially gave up on physio etc.
    If It had been explained that the therapies would have helped me in the future I would have had a different opinion. In fairness though, I'm not certain how much was known about ageing with CP at that time.
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

    'Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Want to tell us about your experience in the community? Talk to our chatbot and let us know. 
  • PhilG111
    PhilG111 Member Posts: 14 Listener
    Sadly my son's mental capacity is not to that level of reasoning, he knows what he likes, typically female therapist, and he knows which therapy he likes, hydro especially and anything he doesn't like he tries to pretend he's tired and complain as much as possible.

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