My 8yr old has been diagnosed with hemiplegic cerebral palsy after years of fighting with doctors — Scope | Disability forum

My 8yr old has been diagnosed with hemiplegic cerebral palsy after years of fighting with doctors

vix125
vix125 Member Posts: 7 Listener
edited June 6 in Cerebral palsy
My son is newly diagnosed with cerebral palsy and I'm feeling a bit lost
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  • Tori_Scope
    Tori_Scope Posts: 6,662

    Scope community team

    Welcome to the community @vix125 :) Thanks for joining. 

    A child getting a new diagnosis can be an overwhelming time for many parents. Is there anything in particular you're feeling confused or worried about, or is it more of a general feeling of being lost? Have you had any communication from your son's doctor?

    Scope also have some family services that you might be interested in checking out. Parents Connect is a support programme for parents of disabled children, and Navigate is a mentoring service for parents of children who've received a recent diagnosis.

    I'll also tag in our Specialist Information Officer for CP, @Richard_Scope, here. 
    Online Community Coordinator, she/her

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  • vix125
    vix125 Member Posts: 7 Listener
    We've had no advice at all from the doctors, just given the diagnosis after so many tests and been left to get on with it really.  My son is miserable after all the tests and his physio everyday, he used to be so happy. We've had no information and I don't really know  much about the condition or where to turn because there's so much information out there 
  • Richard_Scope
    Richard_Scope Posts: 2,948

    Scope community team

    Hi @vix125
    How are you? The diagnosis journey can really be overwhelming. All of the testing will take its toll on all of you and it's common to feel confused, lost and angry. Give yourself time to find your voice, Your insight is often the most powerful tool you have to help your child. A good doctor or therapist will want to know what changes you are, or are not, seeing. They will view your input as an important tool to help them approach your child’s care.
    Letting go of expectations about how quickly, and how significant, changes will occur can also help the process of coping with a cerebral palsy diagnosis, for you and your child. This does not mean you do not take action on behalf of your child. It just changes your approach to your child’s development from the place of wanting to lead your child to their greatest possible potential, rather than solely based upon your personal expectations for them. This can be a different way of thinking for some people. It can be hard to not push your child all the time. Allowing them to lead you in their own discovery of self-development can seem scary and not productive. 

    We have lots of information about cerebral palsy and diagnosis and cerebral palsy and young people that will help. If you need to talk please contact me 
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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  • Stayce
    Stayce Member Posts: 720 Pioneering
    edited June 8
    Hi @vix125

    Just wanted to welcome you to the community and reach out. I’m sorry you are feeling a bit lost, take some time to digest  your son’s newly diagnosis. But you will get there together with your son.

    I have Hemiplegia like your son, so if I can help with any questions you may have just let me know 

    All the best

  • WestHam06
    WestHam06 Member, Scope Volunteer Posts: 1,393 Pioneering
    Hi @vix125
                        Welcome to the community and thank you for joining us. How are you? I'm sorry to hear that you are feeling lost following your son's diagnosis, it's a natural feeling and please do just give yourself time to adjust. I can see that you have been given some fantastic advice already so I just wanted to say hi. I have CP so if you have any questions please do just ask and I'll happily try to answer or someone on the community will try too. We are a friendly and supportive community. Thank you

Brightness