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Just found out my 11 months old son has Cerebral palsy

cerivernon1cerivernon1 Posts: 1Member Listener
edited February 14 in Cerebral Palsy
Hi I just found out tosay my 11 month old boy has cerebral pasly that effects both legs and left arm not sure what to expect

Replies

  • thespicemanthespiceman Posts: 5,399Community champion Disability Gamechanger
    Hello @cerivernon1 Pleased to meet you welcome.

    Sorry what has happened. We have a SCOPE member of staff who is our Cerebral Palsy advisor.

    @Richard_Scope he will be in touch with you.  To advise further.

    Hope that helps.

    I am one of the team of community champions. Who help and advise new members.

    I know we have on our website additional support from members who you may be interested in.  Under Cerebral Palsy.

    Please take care.

    @thespiceman
  • Richard_ScopeRichard_Scope Posts: 1,717Administrator Scope community team
    Good to meet you and thank you for your post. Receiving a diagnosis can be a very confusing time. On the one hand, it is helpful to know that your child has a recognised impairment and can now receive help and treatment and on the other, it raises more questions for you and your family.
    We have lots of information about Cerebral Palsy and advice about Help after receiving a Diagnosis.

    I live with quadriplegic (4 limbs) Cerebral Palsy and I can chat to you about CP. You are not alone :)

    Scope
    Specialist Information Officer - Cerebral Palsy
  • Sarac_ScopeSarac_Scope Posts: 30Navigate Connected
    edited February 21
    Hi @cerivernon1  I am a Parent Adviser for the Scope Navigate service.  Navigate provide 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.  The aim is to provide parents with emotional and practical support that will help them build resilience as they start on their journey as a parent of a child with a disability or impairment.
    Our service launches on Monday 25th February.  I will come back to your post on Monday and provide the Navigate phone number if you feel this would be beneficial to you.

    Kind Regards
  • Sarac_ScopeSarac_Scope Posts: 30Navigate Connected
    Hi @cerivernon for more information and to apply online, please visit http://www.scope.org.uk/navigate
  • Sarac_ScopeSarac_Scope Posts: 30Navigate Connected
    Hi @cerivernon

    I was just wondering how you have been feeling since your first post about your little boy's diagnosis.

    Remember there is plenty of support on this community and we at Navigate are here to provide any emotional or practical support if you felt it would be suitable.

    Take care

    Sara
  • JennyWJennyW Posts: 6Member 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.
  • Sarac_ScopeSarac_Scope Posts: 30Navigate Connected
    Hi @JennyW

    Your daughter sounds like a lovely little girl and seems to be doing well at the moment.  I can understand your concerns regarding her CP diagnosis, it's a worrying time but this community is here to offer you advise and support.

    As I mentioned in one of the previous posts, I am a Parent Adviser for the Scope Navigate service.  Navigate provide 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.  The aim is to provide parents with emotional and practical support that will help them build resilience as they start on their journey as a parent of a child with a disability or impairment.

    If you feel this service would be beneficial to you please visit http://www.scope.org.uk/navigate or call:
    0808 801 0510

    Kind Regards

    Sara



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