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What to expect if my little boy has cp?

ClareWilliams
ClareWilliams Member Posts: 19 Connected
edited May 2018 in Cerebral palsy
Im waiting for mri scan to confirm if my little boy has cp, I don’t know what to expect, I keep getting mixed answers and looking online and comparing my little boy I’m confused/worried and scared

Comments

  • JennysDad
    JennysDad Member Posts: 2,299 Disability Gamechanger
    Hello Clare and a warm - if slightly delayed - welcome to the community. I'm sorry I was not able to respond sooner. And I am sorry, too, that you are feeling confused, worried and scared. I remember the feelings only too well.
    Please do not misunderstand what I am about to say. I lost a child who had massive disabilities which included CP, but the CP had nothing to do with her death. Had CP been her only diagnosis life would have been a dream compared to what it has been :)
    I do know the hard part, however, those first hours, days, weeks when you know there is an issue, when sometimes - as in your case - a name has been put to the issue, but one really has not the slightest idea of what it means. It is a horrible thing to go through and I am very sad that something so similar is happening to you.
    But let's move on. I'm going to tag a gentleman here, @Richard_Scope , who not only knows about CP but has it himself and who is a fully (and rather excellently) functioning member of the Scope team. I have known many, many children with CP and my knowing them has been a privilege, They are beautiful children and fine human beings.
    Depending on the degree of CP you will have issues to overcome, but they will not be overwhelming. CP is well-understood, children with CP almost invariably attend normal schools and support is not usually difficult to find.
    Anything else I'm going to leave, at this point, to Richard_Scope, but I'm here if there is anything you wish to ask me. Putting the tag @JennysDad in a post will pretty much ensure that I get to read it.
    One day at a time, Clare, loving your little boy and taking care of yourself. The rest will come.
    Very warmest best wishes to you,
    Richard
    @JennysDad

  • MYBOYJD
    MYBOYJD Member Posts: 6 Listener
    I’m going through the same thing and waiting for my sons MRI I’m here if you want to talk 
  • ClareWilliams
    ClareWilliams Member Posts: 19 Connected
    Hi @JennysDad, thanks for replying, it’s hard because I’m one hand she’s saying she’s not sure because his pattern isn’t the same but there’s definitely high tone in both legs, left worse. I’m just hoping to get some answers tomorrow and hopefully waiting time for mri isn’t to long. 
  • ClareWilliams
    ClareWilliams Member Posts: 19 Connected
    Hi @MYBOYJD how old is yr little one? Have you been given any indication on how bad it is? What limbs/muscles is effected? 
  • Belinda1970
    Belinda1970 Member Posts: 1 Listener
    Hello Clare, my eldest daughter has cerebral palsey, and is also profoundly deaf. She had a cochlear implant at 5 yrs old.Shes now 25 yrs old and a very independent, young woman, and works full time. She lives with her partner and is enjoying life. I know its very daunting and scarey not knowing what to expect. Especially when you haven't dealt with anything like this before. You have to stay positive and never say to your child, that they cant do something because of their disability. Let them at least try, i was told Danielle would never walk. I wasnt having that!! Every single day we practiced walking with her little frame together, up and down the street. Even the neighbors and their kids helped with Danni. Dont get me wrong, it was very hard work, our kids learn from us as parents and you will be scared at first. These children are amazingly strong and determined. I hope you get the results that you want, and you'll be fine. At least theres plenty of support nowadays x x
  • Richard_Scope
    Richard_Scope Posts: 3,103

    Scope community team

    Hi @ClareWilliams
    Welcome to the Community. Waiting for a diagnosis and the receiving it can be very scary. It is absolutely normal to have that feeling. I'm going to include some links here that may help.

    Cerebral Palsy
    https://www.scope.org.uk/support/families/diagnosis/cerebral-palsy 

    Parent Guide
    https://community.scope.org.uk/discussion/comment/Parent%20Guide:%20https://www.scope.org.uk/support/families/parents-carers 

    We also have a helpline that can offer you advice and support.

    Stay in touch. We're here to support each other.
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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  • ClareWilliams
    ClareWilliams Member Posts: 19 Connected
    Can I ask someone with or dealing with cp some questions? I understand if no one wants to iv just been reading a lot an there is many mixed references 
    thanks in advance 
  • MYBOYJD
    MYBOYJD Member Posts: 6 Listener
    @ClareWilliams my son is 15 months old. I’m still in the process of getting a diagnosis although it’s suspected cp at this stage. He can’t crawl or weight bare on his legs but can bum shuffle. He has low muscle tone in both legs. I’m waiting on his MRI appointment then we’re seeing a group of doctors to properly assess him. I’m also waiting on physio and Speach Theraphy for his eating and swallowing. 
  • ClareWilliams
    ClareWilliams Member Posts: 19 Connected
    @MYBOYJD  Has he ever been able to weight bar or crawl? 
    My little boy was able to bare weight and walk few steps independently with bent knees all time. But now he can’t walk even holding my hand or bare weight on his own. He does crawl an can climb the stairs, 
    iv been told he had hi tone, we are also waiting for mri, spoke to doctors yesterday and he said should be in nxt couple weeks, it’s horrible all the weighting I just want to know what’s wrong with my son an be able to deal with it an get the right help for him. 
    I hope yr not waiting to long for yr appointment, have you been waiting long so far? 
  • MYBOYJD
    MYBOYJD Member Posts: 6 Listener
    @ClareWilliams I know exactly how you feel. It feels like I’m screaming at the top of my voice and no one can hear me. My son dose try to crawl but has trouble staying on his knees and falls. He can sit up straight and strong but only if I put him in that position. I try to get him to stand but can only hold his weight with my support he cannot balance and will only support himself for a few seconds. Hes can bum shuffle quite well now though but he doesn’t have the strength in his arms to pull himself up on stairs or anything. 

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