Spastic diplegia CP and tiredness — Scope | Disability forum
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Spastic diplegia CP and tiredness

Charlotte1993x
Charlotte1993x Member Posts: 3 Listener
Hello everyone,

I am looking for some advice on diplegia CP and tiredness. My son has this form of CP and senco are saying that his form of CP is what causes tiredness. However he is always tired. 
Im guessing this is because of his cp and othet factors like his seating etc which is due to be assessed.

Does anyone with spastic diplegia CP feel tired all the time and is it because of the CP itself?

I always thought this was the case, however just trying to gain more information bcause use the  school are trying to argue this.

Any advice would be appreciated, thank you. 

Comments

  • Ails
    Ails Member Posts: 2,256 Disability Gamechanger
    Hi @Charlotte1993x and welcome to the Community.  It is nice to meet you and thank you for sharing with us.  Within the forum, there are some members who have CP and they may be able to answer your questions and share their experiences with you.  However, please be aware that we are not medically trained so can't provide any medical information for you, sorry.  Have you discussed your son's CP with his GP or a consultant to gain more information regarding his tiredness?  They maybe able to shed some light on this?

    Meantime, you will find a lot of discussions around CP on the Community and I am including some of Scope's information regarding CP for you if you want to take a look - 

    https://www.scope.org.uk/advice-and-support/cerebral-palsy-for-young-people/

    Also I will tag in Scope's CP Information Officer, @Richard_Scope, who may be able to help you further.

    Hi @Richard_Scope, could you please help the above member with their questions regarding CP?  Thanks @Ails.

    Meantime, please keep in touch with us @Charlotte1993x, and let us know how you and your son are getting on.  We are here to support you on the Community anytime.  All the best.  :smile:
    Winner of the Scope New Volunteer Award 2019.   :)
  • Richard_Scope
    Richard_Scope Posts: 3,114

    Scope community team

    Hi, @Charlotte1993x it's good to meet you and thank you @Ails for tagging me into this conversation.

    People that live with CP can experience tiredness and fatigue because of the way we move and perform daily tasks. It has been suggested that people with CP use 3 to 5 times more energy than non-cp people. So, CP can definitely play a part. For example, I try to get all of my mentally and physically demanding tasks completed in the mornings, when I have the most energy. Obviously though if you are concerned about the continuous tiredness, please get your son looked at by your G.P. just to rule out any other health issues.
    There was that you can help him increase his stamina. Things like swimming can really help strengthen him without putting stress on his legs and joints.

    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. 
  • Charlotte1993x
    Charlotte1993x Member Posts: 3 Listener
    @Richard_Scope

    Thankyou, yes this is the same for my son. We do the of our activities or hospital visits in the morning due to him being tired. 

    I am aware of people with cp use 3-5 times the amount of energy. As are the school however they have recently said that tiredness is not part of my sons cp. He burns energy quicker than others, so yes it definitely is because of his cp. 

    On his health side of things, everything is ok. I don't have any conerns over this. If he stay home all day doing nothing he has average energy levels of someone his age.

    Thankyou for your help Richard, i just wanted to clarify that what i was thinking about the extra energy burn out was really the case. I can go back to them to say otherwise. 

    Charlotte. 




  • Richard_Scope
    Richard_Scope Posts: 3,114

    Scope community team

    No problem @Charlotte1993x, if I can help further let me know :)

    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. 
  • Charlotte1993x
    Charlotte1993x Member Posts: 3 Listener
    @Richard_Scope yes there is one more thing if you could help please.

    Does scope have any information on explaining cp to children? I know there are some adult information pages but nothing i have seen explains this to children.

    Thankyou, 

    Charlotte. 
  • Richard_Scope
    Richard_Scope Posts: 3,114

    Scope community team

    We have information about Cerebral palsy for Young People and these videos from Kids Health are really useful. Ther are some books for kids but they might quite dated now. Ceana Has CP and Taking CP to School. When my mum had the chat with me she said that I had poorly legs to start with and then added more depth and detail as I got older.
    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. 
  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,557 Disability Gamechanger
    Hi @Charlotte1993x, thank you for sharing this. I have CP and can definitely relate to this. It also become more prominent when I started high school.

    Here is a piece that I wrote about cerebral palsy and energy levels, it also includes quotes from other people: https://chloetear.co.uk/2019/07/cerebral-palsy-and-energy-levels/
    Scope

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