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lou1987smith
lou1987smith Online Community Member Posts: 1 Listener
edited April 2017 in Cerebral Palsy Network
Hi everyone. Well our little mans had his mri and yesterday the drs phoned to say he has PVL damage so its cerebral palsy which iv said all along. Still waiting on appointment to see th dr but im hoping now people will start to work together.
We have had to put him back food wise as he his chewing isnt breaking up the food so is chocking and he now will only eat foods he can just swallow. He has constant diarrhoea  :'( aswell as is low muscle tone all over. Waiting on a walking frame been 4 weeks and counting 

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  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,602 Championing
    Hi @lou1987smith welcome to the community.  Take a look at the Parents and Carers category to connect with others with children.

    It sounds like you have had a tough time to get to this point, the community has so many members with lots of different experiences so do reach out if you have any specific questions.
  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,602 Championing
    Hey @lou1987smith how are you all doing?
  • Rayche45
    Rayche45 Online Community Member Posts: 8 Listener
    Hi Lou, hope you are ok and the little one is keeping you on your toes. 
    How how he?  I have twin boys which one has recently been diagnosed with cp. 

    One thing I must say is keep on nagging at the relevance people. You shouldn't have to I know but it's a world of "who shouts the loudest" when It comes to the NHS and appointments. Xx
  • NatzG2021
    NatzG2021 Online Community Member Posts: 7 Listener
    Hey, my son had PVL from a delayed and horrible birth which they said could lead to cerebral palsy but something in my heart knew it was going to be severe and has been diagnosed with spastic quadriplegic cerebral palsy, I am finding it hard to relate to my friends about the topic how is your little one doing 

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