Cerebral Palsy
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Future unknown

JennyWJennyW Member Posts: 6 Listener
My little girl is 14 months old and we received a diagnosis of pending CP a few months ago. It has been described as mild and so far only seems to affect her gross motor skills. It appears to affect all four limbs but our consultant has not yet confirmed anything nor has he confirmed the type of CP she has. Her physical therapist suspects she has Dyskinetic CP. I think she experiences a fluctuation in muscle tone. Some days she sits well, crawls and plays really well and other days she seems to regress. I'm trying to get my head around what this means for her as she is a bright little girl. Her CP does not affect her thinking and learning. I'm concerned that she will become frustrated because she is not able to walk. She attends nursery and socialises really well with the other children and her carers. She is very inquisitive, can feed herself, holds a spoon, drinks from a cup, can hold items between her forefinger and thumb, loves books, loves standing (whilst I hold her hands) and will happily play on her tummy. I just don't know what the future holds and have days like today, when I'm tired and she seems to have regressed when I fear for the future and wonder why this had to happen to my child. Otherwise I'm very proud of her. She makes me smile and I'm madly in love. I believe she will walk and go to a main stream school. I'm just scared of the unknown and need reassurance.

Replies

  • Emma_ScopeEmma_Scope Scope Navigate service Posts: 51 Courageous
    edited March 2019
    Hello @JennyW

    Welcome to the community. It can be really hard to get your head around a diagnosis and know where to turn next. There is a lot of support out there and Scope's online community should be able to point you in the right direction. You may also want to see what support is available in your local area. Have you accessed your Local Offer or Family Information Service (FIS)? 

    If you would like talk through things with someone in a safe space, Scope has recently launched a service called Navigate. Navigate provides a six week programme of online and telephone support to parents who have a child going through diagnosis or have a child who has recently been diagnosed with a disability (within 12 months). The aim is to provide parents of a child with a disability with emotional and practical support and help them navigate these early stages. 

    If you think this may be something that could benefit you please visit https://www.scope.org.uk/family-services/navigate or call 0808 801 0510

    Best Wishes. 
    Emma Bailey
    Parent Advisor
    Navigate Team at Scope
  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,954

    Scope community team

    Hello @JennyW, welcome to our community.
    As Emma said, it can be difficult to get your head around a diagnosis, I can imagine it raises a lot of questions for you and your family, but it also means you can now start getting help and treatment for your daughter. 

    I am tagging @Richard_Scope our CP specialist who may be able to advise you further. 

    In the mean time, as well as Navigate, we have lots of information about CP on our advice and support page and our help after receiving a diagnosis page. If you have any specific questions for us, please don't hesitate to ask.
    Senior Community Partner
    Scope

    Your feedback is really important to the development of the online community, so please remember to complete our online community annual survey
  • martinsmartins Member Posts: 30 Connected
    Hi
    My daughter has CP. When I finally got the health visitor and doctors to agree that there was something wrong with her they told me she would never see, hear, walk or speak. However she is now 24 yrs old and she hears very well sees very well and speaks non stop she walks but with a rolater. I sent her to mainstream school. It's not easy you will have lots of hurdles to jump but she will grow up knowing that she can do what ever she wants to do you just have to be strong and fight for what's best for her. Never never give up and she will get there.
  • Government_needs_reformGovernment_needs_reform Member Posts: 858 Pioneering
    martins said:
    Hi
    My daughter has CP. When I finally got the health visitor and doctors to agree that there was something wrong with her they told me she would never see, hear, walk or speak. However she is now 24 yrs old and she hears very well sees very well and speaks non stop she walks but with a rolater. I sent her to mainstream school. It's not easy you will have lots of hurdles to jump but she will grow up knowing that she can do what ever she wants to do you just have to be strong and fight for what's best for her. Never never give up and she will get there.

    Well said @martins good to hear this positive response and encouragement. ⭐️⭐️⭐️⭐️⭐️
    ⬇️
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  • Kate_ScopeKate_Scope Scope Navigate service Posts: 74 Pioneering
    Hi @JennyW My name is Kate and my daughter is 18 and has Cerebral palsy, she has a diagnosis of Spastic Diplegia. 
    She is a full-time wheelchair user but can eat, talk, read and write has been to mainstream school and is now in College and we have a bit of a joke that where her legs do not get her, her speech does. She has passed all of her GCSEs and is now studying for a BTEC level three in health and social care. She astounds me and is the light of my life. I have never seen a human with such determination or drive to do things. 
    The watchful waiting at the start was the hardest part of the journey for me- it is definitely the unknown that caused me more issues than anything else. The days that you describe are quite a lot at the start of this journey but these become few and far between as time goes by- like others have said it's not easy in those first years not knowing how it will affect them in later years. 
    She is 18 now and looking for work- I will be honest I saw a wheelchair as a negative thing at the start- BUT what a difference to her life, she is independent and goes to the shops on her own, uses taxis and can get on with her life in a much more manageable way for her. 

    It is hard and some days are overwhelming but it's wonderful in equal measure. 

    Keep going with Physio and just try and enjoy all the wonderful things about her, I started to take things a day at a time and we started to enjoy her more than wondering what her future held. It was a lot easier for me to manage my mental health and wellbeing then also.

    Good luck you and your lovely daughter 
  • Richard_ScopeRichard_Scope Posts: 2,733

    Scope community team

    Hi @JennyW
    I echo all of the response that you have already had. Receiving a diagnosis can often present you with more questions than answers. I can only speak from my point of view as somebody who lives with quadriplegic CP, some areas of life will present different challenges for you and your daughter but those challenges can be overcome! 
    Some days will be harder than others and it is completely natural for you to have concerns about the future, I do for my own daughter.
    Keeping up with the physio is so important and will benefit your daughter in years to come.

    Be kind to yourself, you are doing a great job!
    Scope
    Specialist Information Officer - Cerebral Palsy

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