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My 4 year old has CP. Not walking yet.

MichelleClaireMichelleClaire Posts: 2Member Listener
edited May 2018 in Cerebral Palsy
My son Charlie was born at 26 weeks and 5 days. We were told early on that he had PVL found on his head ultrasounds. And this could manifest itself as CP.
Charlie was officially diagnosed from a MRI when he was about 18 months. He was late in meeting his milestones. He can four point crawl and is able to cruise but only for very short distances. He also sits up by kneeling but often adopts the W leg position. After a discussion with his Physio she feels he will be unlikely to walk independently but may become proficient with a K walker for short distances.
I wanted to ask advice could the Physio be wrong? Charlie will be 4 next month. I was hopeful that Charlie would be able to walk independently around the house allowing him to take himself to the toilet. But am beginning to think I am being naive about this. His speech is great.

Replies

  • kingboy25kingboy25 Posts: 139Member Listener
    Don't worry about what the Phisio said. She is hardly going to commit herself by saying he will walk just yet. I believe the bench mark age for being able to state a child won't walk is seven years.
  • fatimafaisalfatimafaisal Posts: 3Member Listener
    Hi Michelle I have a son who just turned 4 and physically is about thevsame as ur boy. Infact he hasn't yet taken off to walking or cruising yet your situation is more promising. ... if your boy can cruise he will walk too.. it csnt be sense tht u cruise but not walk. .... hang in there.... would love to be in touch with you as we are so much in similar situation as me.
  • pantherpanther Posts: 251Member Courageous
    Hi Michelle

    As someone has already said hang on in there. I'm now 39, as a child I didn't reach any of my milestones on time except talking!!
    My parents were originally told I'd never walk, talk or sit up.

    But I proved everyone wrong it just took me longer to reach those points other children do.
    I now live independently, am getting married next year, I have worked in the past and hope to go back to work sometime soon.

    I hope my post helps you to think positively for your son I know my parents said it was hard work getting me to do my physio etc but give your son time he might surprise you all yet.
  • fatimafaisalfatimafaisal Posts: 3Member Listener
    Hi panther thnx for sharing your story... it does give me hope specially when recently I ve been very worried n struggling to stay positive and hopeful for my son. It sometimes gets so hard.... there us a lot to do n cope with. ..
  • MichelleClaireMichelleClaire Posts: 2Member Listener
    Thank you for your comment it's lovely to hear some positive news. I worry about the future for him. He is a little Gem who has already made me very proud he never gives up and has shown such sheer determination and ingenuity. He is adept at coming up with ways of getting round his difficulties and amazes me every day. I think some days I just get down and fearful of the battles he will face. Thank you again for the kind comments. : )
  • LeonMLeonM Posts: 3Member Listener
    I too have CP, spastic diplegia and ataxic. I was late reaching my milestones, I think it wasn't until I was four that I started walking. I even struggled crawling and instead i lay on my stomach and dragged myself around with my arms which resulted in some very good upper body strength if I do say so myself haha! I think children with CP are very adaptable, they learn to do things differently in order to make up for their weaknesses.

    It's natural to worry about the future but try and take each day as it comes. Although my CP is mild, I live a perfectly normal life for a 17 year old. I'm fiercly independent, went through mainstream school and I'm also now in mainstream college studying a levels and I've always been of above average intelligence apparently (dont mean to blow my own trumpet!) Sure there have been some low points where I've really struggled but you get through then, you're only human. But the thing to remember is that your son, like me, doesn't know any different. To you it must seem harder than it is because you've led life perfectly able bodied I assume, but to me I dont know any different and I adapt to find different ways of doing things I otherwise can't.

    Hope this helps in some way and good luck :)
  • missunique14missunique14 Posts: 1Member Listener
    hiya Michelle
    i have a son who is 3 years of age nearly 4 he cant do anything by him self he cant sit up unaided he cant walk he cant talk but dose make sound but when owen was born i was told he would basicly be bed bound and that he wouldnt move any of his limbs BUT owen proved every body wrong he can move his arms and legs he smiles he giggles he holds his head by himself he looks around he does all the things that the doctors said he wouldnt. i have every bit of faith in my son he has proved so many people wrong you just have to encourage and show them you beleive in them its amazing how strong such young children are they are fighters and it will take time maybe a lot of time but who knows maybe one day you will be shocked and your little boy may walk and if he never does whats it matter aslong as he knows that his mum has all the faith in him he will keep trying thats how i get on day by day my son is at school and uses a standingf frame on a daily basis and the diffrence i see in him his amazing it just takes time i hope this makes sense and helps in some way

    good luck :)
  • NoahNoah Posts: 430Member Pioneering
    Hi Michelle,

    I just want to say don't give up, he will continue to amaze you with what he can do, there are so many amazing experiences out there of people with CP that go on to live extraordinary lives and prove many of the professionals wrong. I know when I was young and wasn't reaching milestones, my mum never gave up, and also didn't believe in wrapping me in cotton wool either, which I think was a very good thing.

    just a few possible ideas....which are worth looking up online, things that I would have liked to have discovered earlier.

    Dance movement therapy - its amazing how music can help stimulate movement.
    Swimming - Water helps support the body upright
    Using the wii board to help improve balance and coordination.

    Its great his speech is good, that makes a huge difference, also sounds like you are doing all the right things and he is developing the qualities that will take him very far and help him be successful.

    Keep us posted

    Noah
  • 143ggs143ggs Posts: 3Member Listener
    Hi, my son was born at 25 weeks, 1lb 15oz, 18 years ago, he was very late with all milestones and like you I was told he would never walk independently and he would be wheelchair bound by secondary. Sch. My lad walks with a k walker, crutches and if he's in a hurry he scoots on his hand and knees, he has cp, epilepsy and high learning delays, not a great picture I know, however, he's not permanently in a wheelchair yet, he's generally a happy lad and he racing a hand controlled go kart all on his own. Don't lose hope because anything is possible .
  • DMichelleDMichelle Posts: 1Member Listener
    Hi,My son has CP and a VP Shunt he just turned 2 and isnt walking talking or sitting up without help.He does all therapy PT,OT,DT and speech.
    Even without him hitting his milestones he has came a long way but just like many of your doctors told me he won’t walk or talk and it’s so discouraging at times feeling hopeless. I believe in my baby boy!!
    But I’m just curious about other tips and tricks I can do to help my baby boy!!
  • Richard_ScopeRichard_Scope Posts: 1,704Administrator Scope community team
    Hi @DMichelle 
    A very warm welcome to the Community! 
    It is great to read about the progress that your boy is making and your positive attitude!
    It sounds as though you have many of the bases covered but I will include some links here that may help.

    Our Parents and Carers discussions:
    https://community.scope.org.uk/categories/carers-of-disabled-children-and-adults 

    The Bobath Centre:
    https://www.bobath.org.uk/about-us/welcome 

    Bobath is a specialist treatment and training centre, and a charity dedicated to supporting children and families living with cerebral palsy and similar neurological conditions.

    I hope that helps. 

    We would love to hear how your boy progresses. Stay in touch.

    Scope
    Specialist Information Officer - Cerebral Palsy
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