My son has Cerebral Palsy
Comments
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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?
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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 -
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. -
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?
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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?
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Oh Alex I am in the Bolton area.
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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. -
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.
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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
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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 Ian.jones@scope.org.uk 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
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I have CP as well I used to go horse back riding which helped my muscles stay loose @jamiemcminn
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Thank you swimming is good too I used to do that as well Stayce
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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 -
Hey my young son also has cerebral palsy would love to have a chat if up
for it xx
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