Cerebral Palsy
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My son has Cerebral Palsy

jamiemcminnjamiemcminn Member Posts: 4 Listener
Hi, i'm Jamie, my two year old son James has recently been diagnosed with Cerebral Palsy, he has physiotherapy everyday and is starting hydrotherapy soon. Does anyone have any suggestions on what else could help him? Anything would be greatly appreciated, as i'm struggling to take everything in right now. Thanks!

Replies

  • AlexAlex Scope Team Posts: 1,325 Scope community team
    Hi Jamie,

    Welcome to the community. Great to have you here.

    Scope offers home visits to people with a new diagnosis if you'd be interested? They can talk you through everything if you feeling a bit overwhelmed. Let me know your whereabouts in the country I can pass you on to the correct person.

    There are lots of people on here with experience of cerebral palsy, so I hope we can help!

    Any suggestions @MrsW @Colin8703 @JoJo123 @saraaw74 @ChrisC?
  • StayceStayce Member Posts: 345 Pioneering
    edited January 2017
    Hi Jamie,

    Welcome to the community.

    In terms of what else might help your son. Has your physiotherapist mentioned whether orthotics or splints would be appropriate for your son? This would be a specialist in devices such as ankle splints or insoles or positional splints. There are lots of different kinds which can make a big difference to balance, awareness of affected limbs, confidence in movement or even just comfort. I would definitely ask your Physio or GP about this.

    Occupational therapy will also be something to bear in mind as he gets slightly older. This will help with anything from play, dressing, to vocational aspects

    Hope this helps

    Best wishes
  • jamiemcminnjamiemcminn Member Posts: 4 Listener
    Thank you! He does have splints and a standing frame, plus a bath seat. I was just wondering if there were any little things I could be doing to help too. I massage his legs, as those are the most affected, I always feel like I should be doing more though. He has just started nursery, so hopefully that will bring him on more.
    It helps talking to other people too, just feeling very overwhelmed right now.
  • StayceStayce Member Posts: 345 Pioneering
    It certainly is good to talk here on the community. You have a lot to take in for your son right now, but you will become his expert and find out what works for him. Take it one step at a time you will get there for him. Great news that you already have splints and frame. In terms of the little things. One side of my body is affected. My parents were told and shown how to provide sensory feedback to affected limbs through handling, touch, and through games by neurological physiotherapist - is this something you have been shown by physio? Is the physio a specialist in neurological conditions?
  • CIMTukCIMTuk Member Posts: 12 Connected
    Hi @jamiemcminn I am physio that works with children with CP. I am happy to answer any questions you have. How is James doing with regards to his milestones. Is he able to move his head, sit unsupported, roll, stand?
  • jamiemcminnjamiemcminn Member Posts: 4 Listener
    Oh Alex I am in the Bolton area.
  • jamiemcminnjamiemcminn Member Posts: 4 Listener
    James can roll & drag his way around the floor, he has started low and high kneeling unaided and has just started pulling himself from lying to standing on his own. He has baths with epsom salts, a massage after his baths, yet at the moment his legs seem stiffer than usual, i'm continuing with his streches and his physio said the recent stiffness could be due to a growth spurt? 
    Thanks for all the advice, I will mention the games etc to James' physio. Everything anyone has to share is really appreciated! It's great there are places like this where people can talk and get advice about things.
  • CIMTukCIMTuk Member Posts: 12 Connected

    Sounds like he is making good progress. When a child goes through a growth spurt the bones usually grow faster than the muscles. This gives the impression of stiffness whilst the muscles are adapting to the longer bones. I am based in the Manchester area so not too far. It sounds like James is getting lots of input from physio. The hydro will be really good. Children really enjoy it and it is a great way to strengthen muscles, the heat also help the muscles loosen.

  • forgoodnesssakeforgoodnesssake Member Posts: 319 Pioneering
    Hi, you haven't mentioned whether or not his speech is developing roughly "normally" ...but if you have any concerns about it you should also be getting referred to a speech and language therapist since communication is an essential part of development, education, social skills etc, but seems often to be overlooked in the early days after diagnosis with much more emphasis being put on physical skills.  And it is NOT too early at 2 years old, which is something you might get told!
    My son is now almost 19, athetoid CP, wheelchair user, poor hands, no speech so uses a communication aid and currently in 6th form with offer of a place at Newcastle Uni to study maths from September!  he got his first communication aid at 2 and started using some symbols at just over 12 months.  Best wishes, Jenny
  • StripesStripes Member Posts: 24 Listener

    Hello Jamie

    I am Scope's Information and Advice worker  for your area. If you would like me to come and see you then I would be happy to do so.

    I can give you advice and information on other organisations and support groups  in your area.

     I also have the condition cerebral palsy so would be happy to give you an insite in relation to my experience on living with the condition.

    I would be happy to answer any further question you may have on how the condition affects as you grow up

    If you would like me to visit please could you drop me an email to [email protected] with your address and phone number and then I can get in touch with you and we can arrange a visit.

    Regards

    Ian Jones

    Information and Advice Worker Northern Region


  • DannyBoy2541DannyBoy2541 Member Posts: 24 Connected
    I have CP as well I used to go horse back riding which helped my muscles stay loose @jamiemcminn
  • StayceStayce Member Posts: 345 Pioneering
    Great suggestion @DannyBoy2541

    Swimming is also a good way to help tight muscles associated with CP 
  • DannyBoy2541DannyBoy2541 Member Posts: 24 Connected
    edited February 2017
    Thank you swimming is good too I used to do that as well Stayce 
  • Sam_ScopeSam_Scope Member Posts: 7,732 Disability Gamechanger
    Hi @jamiemcminn I was just wondering how your son was getting on? Did you see the recent post we had about hydrotherapy
    Scope
    Senior online community officer
  • NatzG2021NatzG2021 Member Posts: 7 Listener
    Hey my young son also has cerebral palsy would love to have a chat if up
    for it xx
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