Hi, my name is Dundas! My grandson is showing signs of Cerebral Palsy — Scope | Disability forum
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Hi, my name is Dundas! My grandson is showing signs of Cerebral Palsy

Dundas
Dundas Community member Posts: 2 Listener
edited July 2023 in Cerebral palsy
Hi,
I am new to the community, but have severe concerns regarding my grandson who is 2 and a half and show signs of cerebral palsy. He is a twin and can not speak apart from a couple of words, whilst his twin sister is now talking in sentences. He is constantly falling over and carries his right arm at a right angle to his body when running. His right foot also turns inwards.
My daughter has been trying to get him seen for over a year now and nothing is happening despite constant chasing of the GP who has stated that she has sent the referral letter off, and she will need to wait to be contacted.
My daughter lives in East Sussex.
Can anyone recommend a way to speed up the process?

Comments

  • Hannah_Scope
    Hannah_Scope Posts: 7,316 Disability Gamechanger
    Hello @Dundas

    Welcome to the community! :) How are you today?

    I'm so sorry the process is taking so long for you. I am going to tag @Richard_Scope who is our Cerebral Palsy Programme Lead for more advice :) 
    Hannah - She / Her

    Online Community Coordinator @ Scope

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  • Richard_Scope
    Richard_Scope Posts: 3,615 Scope online community team
    Hi @Dundas

    Some of the things that you describe could potentially be indicators of a child having a condition such as cerebral palsy (cp) but not necessarily so.

    By definition, cerebral palsy is a disorder of posture and/or movement that results from the immature brain either being damaged or failing to form correctly. It is a diverse condition that affects each individual in a way that is specific to them. It can display itself in a way that is similar to other developmental conditions.

    Diagnosis is normally made by a paediatric doctor after a period of observation and tests to rule out the possibility of other conditions. A brain scan can often assist with identifying areas of brain damage but not in every case. There is no stand-alone test for cerebral palsy, diagnosis is more of a process that looks at evidence from different sources (such as medical history, general tests, scans and observation).

    The average age of diagnosis is 18 months but sometimes much later, especially if the person is only very mildly affected or has other health issues that are complicating matters.
     

    Your grandson should be under the care of a paediatrician and should be given access to regular physiotherapy this will help with her mobility and coordination. We have lots of information about Cerebral Palsy and services such as Navigate and Parents Connect for families that have received a recent diagnosis.  
    I live with CP too and I'd be more than happy to talk to you over email about your thoughts and concerns. Please remember that you are not alone in your journey.
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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  • Dundas
    Dundas Community member Posts: 2 Listener
    Many thanks.
    Since posting, I have been in touch with the Dame Vera Lynn charity in West Sussex and they have been amazing. They are prepared to see my grandson and offer help, so I hope that the assistance he needs will now start to fall into place whilst waiting for the National Health to offer a paediatrician appointment.
  • Richard_Scope
    Richard_Scope Posts: 3,615 Scope online community team
    That's great to read, @Dundas! Could I also recommend Action CP?
    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. 

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