Cerebral Palsy
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My son has Cerebral Palsy and is dependant on a wheelchair

debswill68debswill68 Member Posts: 7 Listener
edited February 15 in Cerebral Palsy
My son has cerebal palsy and is dependant on a wheelchair.  For quality of life I am thinking amputation of below knee and prosthetics for him as his upper legs and waist are strong has anybody had this please. He is 21
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Replies

  • emmarenshawemmarenshaw Community champion Posts: 704 Pioneering
    Hi @debswill68 I’m Emma, a warm welcome to the community. While I can’t give you any medical advice, I would suggest speaking to your son’s consultant as they’ll be able to assess him properly and see if he’s able to manage prosthetics,  and advise him/you  all on what they think will be the best way forward. I know it’s daunting,  but there will be some members with similar experiences who will hopefully be able to reassure you. 

    Please give me a shout if you need anything or if you have any questions, even if it’s just for a chat in our Coffee Lounge.


  • debswill68debswill68 Member Posts: 7 Listener
  • janer1967janer1967 Community champion Posts: 7,254 Disability Gamechanger
    Hi and welcome 

    I am a below knee amputee just one leg so can share a bit 

    It isnt easy to use prosthetic legs and in fact I just cant get on with mine 

    However I am 53 and also nearly blind so this doesnt help 

    In my opinion younger people seem to manage better as they are physically more able 

    You need lots of strength in your knee and hips to use them but you can also use walking sticks or crutches for support 

    After amputation it takes a while b4 you heal to be ready for prosthetic and during this time have physio to build up strength 

    If you are talking both legs I'm not sure if they would do both together or seperate 

    Also bear in mind it's not possible to wear prosthetic all time eg in bed and then takes time to put them on if need toilet.  If any swelling if stump or skin irritations will stop you wearing one 

    All this said when I go to clinic others are very able to use them and you would hardly know they have one and as I said in my opinion with him being young that is on his side 

    You do need to speak to his specialists as I dont know if his cp would have any impact 

    Also maybe see what our CP advisor has to say he may know of others who have done this @Richard_Scope
    Any advice here 

    If you have any questions just ask 
  • debswill68debswill68 Member Posts: 7 Listener
  • emmarenshawemmarenshaw Community champion Posts: 704 Pioneering
    No worries @debswill68 Please keep us posted with how you are getting on and just give any of us a shout if you need anything at all and we’ll help or direct you to Team Scope.
  • Ross_ScopeRoss_Scope Community Team Posts: 2,373 Disability Gamechanger
    Hello @debswill68

    Welcome to the community, glad you've joined us. 

    I have no personal experience of this issue, but as suggested above your son's health consultant will be able to advise best in this situation. 

    I have moved your discussion over to our CP category, where you also might find other discussions useful to browse. Furthermore, I'm not sure how old your son is but you might wish to read about Scope's Parents Connect sessions.

    Online Community Coordinator

    Want to tell us about your experience on the community? Talk to our chatbot and let us know.
  • Richard_ScopeRichard_Scope Community Team Posts: 2,587 Scope community team
    Hi @debswill68
    Good to meet you. Amputation is very, very drastic and will not treat your son's cerebral palsy. Does your son have regular physiotherapy and stretches? What is your son's opinion about this?
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • forgoodnesssakeforgoodnesssake Member Posts: 339 Pioneering
    I am also mother of a young adult with CP who uses a wheelchair and so I really can empathise with your wish to try and give your son the best chances.   What I am picking up from your post is that you feel his life would be easier if he did not have to use a chair?  And it's certainly true that wheelchair access can be very problematic at times.  However in order to be able to walk easily with prosthetics my understanding is that he would need huge amounts of physio and also there is no guarantee that his hips and knees, as well as his core strength and stability (as an adult with CP) would allow for easy walking?  As others have said, this is really a question for an orthopaedic consultant who specialises in neuro issues (not all do) and also very much for your son himself.
    As a parent (non disabled) I think it can be very easy to assume that our disabled children must be unhappy or dissatisfied with their impairment; but I have to say that I have discussed this issue with my son a few times over the years and he has never indicated any desire to be anything other than what he is: a non speaking wheelchair user.  He's never known anything different, whereas when I imagine not being able to talk, I doing just that: imagining myself, who has been able to talk for the last 58 years, suddenly being unable to do so; and that is very different to never having been able to at all.
    Don't get me wrong, my son is very happy to use any technology or equipment that will help him with communication or mobility and he gladly did physio and has had ankle surgery to allow him to weighbear and step with support.  But these are interventions to help maintain some function and reduce the need for, say, hoisting.  He was not looking to fundamentally change or be "cured" or anything.  Best wishes.
  • debswill68debswill68 Member Posts: 7 Listener
    Thank you its just seeing his lower legs useless it just made sense to try and enable him and maybe give him a chance to walk x
  • Richard_ScopeRichard_Scope Community Team Posts: 2,587 Scope community team
    Hi @debswill68
    We know that your question was coming from a good place of wanting to help your son. Is there anything that could be looked at to improve his mobility and independence?
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • debswill68debswill68 Member Posts: 7 Listener
    I have seen in the US they did the amputation and replacement with prosthetics and they guy works and lives normally now
  • janer1967janer1967 Community champion Posts: 7,254 Disability Gamechanger
    @debswill68

    Lots if people get on great with prosthetics and can do lots but it's not very often you see any stories of those that dont manage with them but there are lots of people just cant use them 

    You also have to be approved by the prosthesis consultant to actually even be given them . Based in lots of different factors including physio report . After weeks of physio they assess if you are suitable 

    So needs lots of thought its not just a case of have amputation then get prosthetics and away you go 

    It is very drastic option 

    Also the surgery and recovery it's not nice to wake up and see your leg has gone and can lead to emotional distress too 

    I know you only have your sons best interests at heart but it does need lots of careful thought 

    You may even find up against consultants not agreeing to this action 


  • debswill68debswill68 Member Posts: 7 Listener
    Thank you but my view is if he can't use them then what is there to lose x
  • janer1967janer1967 Community champion Posts: 7,254 Disability Gamechanger
    I know and I do understand I am just trying to give you info from my experience of losing my own leg 

    Can he weight bear at all just to stand up for example to move from his chair to toilet ? 
  • debswill68debswill68 Member Posts: 7 Listener
    Yes he can x im sorry to hear of your condition
  • Richard_ScopeRichard_Scope Community Team Posts: 2,587 Scope community team
    As CP is a neurological condition amputating his legs will not make it any easier for your son to walk, unfortunately. 
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • janer1967janer1967 Community champion Posts: 7,254 Disability Gamechanger
    If he can weight bear now be mindful he wont be able to do even this after amputation unless he can use prosthetics and that means he will need lifting or hoists while he recovers and for times when he cant use the prosthetics 

    I was 7 months from amputation to getting a prosthetic and bring able to use it 

    All I am trying to do is make you aware of things you may not have thought of 
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