Cerebral Palsy
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12 Month Year Old diagonsed with CP -- HELP PLEASE

JararJarar Member Posts: 2
edited June 2014 in Cerebral Palsy
My 12 month year old has just been diagnosed with CP. She cannot sit up unaided and her legs are always stiff and regid.

Can anyone offer massage advice or other useful tips as both me and my wife are worried sick.

Replies

  • optimisticoptimistic Member Posts: 8
    Hi Jarar,
    I am in a very similar situation to you, as my little girl was diagnosed with cp 2 months ago at the age of 14 months.
    we were allocated a nhs physio who came weekly to start with and she coordinated all the services and delivery of equipement that has made our lives easier, and we have seen some improvements in Bs movement.
    we took B to an osteopath weekly to start with and she immediatly looked more relaxed and comfortable, he teaches us a new stretch for her everytime we go. we also bought a book that was reccommended on this forum, Teaching motor skills to children with cerebral palsy by sieglinde martin (try amazon) this has been excellent. There is a whole section with photos about stretches in it. Also there is lots of pictures of children with CP in various activities which gave me hope for the future.
    we carried out lots of research and we are starting conductive education in NOvember, also have a place at Brainwave, but there are lots of other therapys out there and each one has its advocates, but there isnt enough hours in the day or money in the bank to do it all!

    Good luck with it all,
    K
  • ScopeHelplineScopeHelpline Member Posts: 209 Courageous
    Hello Jarar

    Please contact Scope Response and we can put you in touch with the regional worker who covers your area, who can give you information about cerebral palsy and about local services.

    You can contact us on tel: 0808 800 3333 (freephone) or by email: [email protected]

    We look forward to hearing from you.

    Kind regards

    Forums Moderator
  • JararJarar Member Posts: 2
    Hi K

    Many thanks for your reply and great advice. I ordered the book and contacted Brainwave too! Its great to hear Bs movement has improved and I'm sure it will get even better. We are currently waiting for NHS to contact us regarding physio etc. Good luck and thanks once again!!
  • sarahprattensarahpratten Member Posts: 35 Courageous
    Hi - my advice would be to contact Advance in East Grinstead (www.advancecentres.com). They teach you exercises known as The Scotson Technique (TST) which address the underlying cause of so many of the problems of cerebral palsy and other brain injuries.Whilst the brain injury cannot be reversed, so many of the problems that follow can be prevented. My son has made amazing progress since we started TST. Hyperbaric oxygen is also available at Advance.
    Best wishes,
    Sarah
  • renacahillrenacahill Member Posts: 145
    Hi. There is so much that can be done to help children with CP. It sounds as though you daughter as spastic diplegia. Along with all the therapies and book listed above dont forget hydrotherapy. The NHS would hopefully have a pool within their services and the lovely warm water is the ideal environment to loosen and strengthen leg muscles. With spastic diplegia it is important to remember that although the muscles feel tight and rigid they are actually very weak muscles and building and strengthening them is the key to success. Failing a hydrotherapy pool any reasonably warm pool is available. If we had the money I would put a hot tub in our garden and use it daily! PS. Thoroughly agree with the book by siegelinde martin - in fact I think it was me that recommended it in the first place. On sale now at amazon at very cheap price. Our physio was so impressed with it she bought one for the department!
  • angela494angela494 Member Posts: 2
    Hi my child is now 3. He also did not sit up.. until 16 months. Worried sick we were and still are but getting a bit more confident now. He was officially given cp title last november - spastic diplegia which is the stiff one on left arm and right leg. -

    Moving him to a nursery from a child minder at 14 months made a difference. He loves other children and mimics. Piedro boots has given him his stability.
    We do his physio every day, and have got pictures from the therapists, these keep him loose. He has a chinese massage one a month and is seeing an ostopath. I also give him a massage at night (learnt it from his sessions and bought a book)
    he also goes to conductive education sessions twice a week - this has help him, and us his parents - as given us other parents to talk to and share suggestions, but also pick up tips how best to handle him and organise his sitting.

    He got a Kaye walker just before his third bithday (he uses this to tear about and run away) and has been fitted with a lycra suit - to help with his core stability.

    Our son has worked very hard but is now walking -- a bit wobbly but getting there. now we need to continue to support him. I wish we had known some of the things we now know earlier. Research whats local to you, and find some cp support. I am constantly researching, and asking questions.

    So there is a lot to do, but I am sure she will get there if you get the right support from her physio to start with. (hopefully NHS is providing you with this).

    I look forward to hearing of her achievements.
  • Kayla81Kayla81 Member Posts: 2
    Hi, my son is now 4yrs old. He still cannot sit up unaided, has no head control and cannot speak. He has regular physio and hydrotherapy which have helped his muscles relax more. I understand you are concerned for your daughter but please don't get worried about her sitting unaided, some children with CP can never sit unaided, all you can do is give the best amount of physio and supportive seating to enhance her life. It is highly unlikely that my son will ever sit unaided or have head control, but we do the best we can for him.
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