Mild CP

lots2410
lots2410 Online Community Member Posts: 4 Listener
edited August 14 in Cerebral Palsy Network

My 2 year old has recently been diagnosed with mild CP. It causes her left arm and leg to be stiff but she can use them both. She has OT assessment tomorrow and physio assessment on Tuesday. She was born at 24 weeks and had 3 surgeries so far, so she’s already been through so much. Can anyone give me a sense of what’s to come? We’ve also decided not to tell family she has CP at the moment but after hearing about Jake (from traitors) and Tom (race across the world) I’m not sure if keeping it quiet is the right thing to do anymore. Our reasoning is to try and prevent people treating her different which they already do given her start.

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  • Mary_Scope
    Mary_Scope Posts: 2,481 Scope Online Community Children and Family Specialists

    Hi @lots2410 and a warm welcome to the community from me!

    It's lovely to have you here on the community and I hope you enjoy your time here!

    Thank you for telling us a little bit about yourself. It sounds like you and your little one have been through quite a lot, how are you both doing at the moment? I hope the assessments go well, how are you feeling about them?

    We do have a great CP network here on the community and some wonderful CP specialists who I will tag now @SaraC_Scope, @Lucy_Scope and @Richard_Scope who provide specialist information and support to people with CP and their families that you may be interested in😊

  • trouble5316
    trouble5316 Online Community Member Posts: 77 Connected

    My cp is classes as mild cant walk though doesn't stop me being cheeky

  • SaraC_Scope
    SaraC_Scope CP Network, Scope Posts: 312 Empowering

    @lots2410

    Welcome to the community. I'm Sara one of the CP Specialists here at Scope and I have right sided hemiplegia.

    I understand your worry for your little girl, especially as she has been through so much. It's a lot for you to process and come to terms with as well. There are some great books that you could share with your daughter if and when you want to have that conversation.

    Books on CP 

    Cerebral Palsy A Parents Guide by Elaine Geralis 

    Cerebral Palsy from Diagnosis to Adult Life by P. Rosenbaum and L. Rosenbloom 

    Cerebral Palsy - Complete Care Giving by Freeman Miller and Steven J. Bachrach 

    Xander's Cerebral Palsy Superpowers by Lori Leigh Yarborough 

    The Abilities in me: Cerebral Palsy by Gemma Keir 

    If you would like to have a conversation with me, I'm happy to offer that support. The CP Network team are here to support adults and families with cerebral palsy.

    I think it's been really helpful that programmes like The Traitors and Race Across the World have portrayed young adults with CP, and showing with some extra support they can be active participants.

    https://www.scope.org.uk/cerebral-palsy-network

  • Shbrook
    Shbrook Online Community Member Posts: 2 Listener

    @lots2410

    Hi, your situation is so similar to mine and I know exactly how you feel. Today we had a Bayleys for my 2 year old and we are a step closer to diagnosis. Only grandparents are already aware of a PVL diagnosis since NICU and that it could mean more at a later date. We purposefully didn't share wider because we wanted to avoid probing questions on something too difficult for us to talk about at the time, especially without answers.

    Personally, we are going to share with close family/friends when the CP diagnosis comes (whenever that may be). It is becoming more obvious in some ways when comparing against peers, so I think we will feel the need soon even without formal diagnosis. Also, work are already supportive with time off for appointments but I think it would help people to understand better of they knew too.

    Like you, I am struggling to understand what is to come as CP is so varied, even within the mild category. I just want to ensure my child can have as many opportunities as possible and not feel different.

    Sometimes I feel ashamed for keeping this a secret when it is our reality, selfish for worrying when I am so grateful for my child, and an imposter when there are parents out there with more challenging caring roles.

    I hope this response helps you feel less alone.

  • lots2410
    lots2410 Online Community Member Posts: 4 Listener

    Thank you all so much, your comments have really helped me. I’m going to look at the books for her and us.

    She can walk but it was delayed and took 6 months from first steps to walking everywhere. They wanted to do an MRI on her but we’ve declined this as we know she had a bleed on her basal ganglia following one of her surgeries as they did ultrasound scan on her head and I don’t want her going under general anaesthetic.

    @Grumpy1314 thank you for sharing your story and showing you can achieve anything.

    Off to occupational therapy assessment soon and hoping to have a plan.

  • lots2410
    lots2410 Online Community Member Posts: 4 Listener

    @Shbrook thank you for sharing, I feel less alone. I hope your little one is as happy as mine though. I was looking to see if we could chat privately but not sure if that’s a feature on here.

  • SaraC_Scope
    SaraC_Scope CP Network, Scope Posts: 312 Empowering

    @lots2410 My colleague @Lucy_Scope hosts an online parents group for children with CP, which you are welcome to attend.

    Her email is lucy.hindmarch@scope.org.uk Please contact her to find out the date and time of the next meeting.

    Kind regards.

  • Richard_Scope
    Richard_Scope Posts: 3,797 Cerebral Palsy Network

    Hi @lots2410

    I wanted to drop by and say hi. You've had some great replies here. Many of the stories mirror my own. My mum (who was very young) was told that I would never walk, talk or sit up independently and that she should put me in a home. I won't type her exact response as it isn't family-friendly 😂

    Suffice to say, through hard work and some tears, lots can be achieved!

    Remember, receiving a diagnosis can bring up a mix of emotions, and there is no set way that you should feel.  

    As you already know, we have the Scope Online Community forum where you can get peer-to-peer support, and talk with me or @SaraC_Scope and @Lucy_Scope. We also have the Parents of Children with CP Facebook group. 

  • trouble5316
    trouble5316 Online Community Member Posts: 77 Connected

    Im walking now with a frame still driving my support nuts

  • lots2410
    lots2410 Online Community Member Posts: 4 Listener

    Thank you all for your wonderful comments and help. Her occupational therapy assessment went much better than I expected yesterday, when she wanted to do the tasks set haha.

    @trouble5316 she already has the cheekiness sorted! Glad to hear that won’t go away 😀.

  • trouble5316
    trouble5316 Online Community Member Posts: 77 Connected

    Giggles

  • Shbrook
    Shbrook Online Community Member Posts: 2 Listener
    https://forum.scope.org.uk/discussion/comment/1058672#Comment_1058672

    @lots2410 Yes it would be good to speak but we can't on here. I've joined the Facebook group now but there aren't many members.

    Glad to hear the OT went well. I think we may be referred to this in the future. Have been through an MRI already which I'd ideally avoid again too.

  • SaraC_Scope
    SaraC_Scope CP Network, Scope Posts: 312 Empowering

    @lots2410 and @Shbrook alongside the Parents of Children with CP Scope Facebook page, there is also Cerebral Palsy UK and many families of children with CP are members of this group.

  • Lucy_Scope
    Lucy_Scope Posts: 145 Cerebral Palsy Network

    Hi @lots2410,

    I also wanted to mention my parent support group.

    Our next session is about Education, Health and Care Plan (EHCPs).

    You can get a ticket on Eventbrite.

    Best wishes,

    Lucy

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