Cerebral Palsy
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I have just been told our grandson has CP

dagehardagehar Member Posts: 3 Listener
edited December 2020 in Cerebral Palsy
I have just been told our grandson has CP. I have alot to learn about CP and how was grandparents can best help & support him.

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Replies

  • Cher_ScopeCher_Scope Posts: 3,422

    Scope community team

    Hello @dagehar and welcome to our community.  I'm glad you found us and I hope we can help you better understand your grandson's diagnosis.

    A great place to find out more information is our Cerebral palsy discussion group.  In there, people with Cerebral palsy and their families share stories and advice on life with the condition so it will help you grasp some of the issues typically faced.

    Can I ask how old your grandson is?  Also, is he under the care of a hospital team?

    It's great that you want to educate yourself about CP and please don't be afraid to ask us any questions :)  We want to support you the best we can.
    Online Community Co-ordinator

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  • chiariedschiarieds Community Co-Production Group Posts: 8,124 Disability Gamechanger
    Hi @dagehar - & welcome to this friendly & supportive community, Dave. Thank you for joining in order to help your grandson. I specialised in treating children with CP as a physiotherapist. Altho this was a long time ago, I know how important it is to involve the child's family; in fact it's crucial. I'm obviously rather biased, as I know how much physiotherapy can potentially help, but hope that physio can be looked into when relevant.
    Scope also has a little info on CP. Please see: https://www.scope.org.uk/advice-and-support/cerebral-palsy-introduction/     & we also have a member of the Scope team, who himself has CP, always willing to answer questions, & give advice.
    Please do chat here any time, & ask questions. :)

  • Ross_ScopeRoss_Scope Posts: 3,266

    Scope community team

    Hello and welcome to the community @dagehar

    It's great that you are going to so much effort to find out how you can support your grandchild :) 
    Online Community Coordinator

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  • dagehardagehar Member Posts: 3 Listener
    Thank you all for the warm welcome. It's early days for us and my son and his wife are yet to inform all the family. I'm reluctant to share his name at the moment until they have accepted the situation. He's coming up to 7 months, is a TOF baby and also has hearing loss. They've had many sleepless nights and have been shattered by the experience so far.

    They are now getting the correct medical attention and appropriate meds to relax his body and presumably still the pain. I believe a team will be in place very shortly. Last night they had a better night's sleep.  

    I'll be sure to draw upon your help & experience going forward. Again thank you. 
  • WestHam06WestHam06 Member, Scope Volunteer Posts: 1,273 Pioneering
    Hi @dagehar
                           How are you? Welcome to the community and thank you for joining us. Firstly, I'm pleased to hear your grandson is starting to receive the medical input he requires, this is so important and will also help your son and his wife as they navigate learning more about CP and how this impacts your grandson. It is also fantastic that you want to educate yourself about CP and how best you can support your grandson and the rest of your family. The main element about CP is that it affects no two people in exactly the same way. Our fantastic Specialist Cerebral Palsy Information Officer @Richard_Scope, who himself has CP, is fantastic and I'm sure will be able to offer advice, I will let him know. I also have CP and would be more than happy to answer any questions you may have so please feel free to ask. Thank you. 
  • Richard_ScopeRichard_Scope Posts: 2,736

    Scope community team

    Hi @dagehar
    I wanted to say hi and give you some information about receiving a diagnosis
    It very much sounds like your son and his wife are doing all that they can and coming to terms with the diagnosis. This experience is different for everybody and there is no right or wrong way to deal with it. My advice is to take it slowly and remember that there is no such thing as a stupid question.
    It's fantastic that you are such supportive grandparents.
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • dagehardagehar Member Posts: 3 Listener
    Thanks for reaching out Richard.
    He's a bright TOF baby, following an op on day 2, now with loss of hearing too. So he has alot to cope with. We live on their doorstep, so are part of their support bubble. 
    He's getting physio once a month, and his limbs are fairly fluid. We're working on his head/neck strength so he can be weened. New meds to help with pain spasms seem to be giving him some relief and parents are now able to get the odd night's sleep. One of my biggest concern is for my son, and that he continues to work. He's lucky to have just built a garden office, so can work undistracted, but his mental health is something for us to watch out for. As a couple they're very together, so fingers crossed.
    As a family we're probably better placed than most, but any help/advice will be welcomed.
    Thanks, Dave

  • WestHam06WestHam06 Member, Scope Volunteer Posts: 1,273 Pioneering
    Hi @dagehar
                           How are you and your family? I hope that your Grandson's new meds continue to help with the pain. Thank you. 
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