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Grandson may have CP?

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Mandy04
Mandy04 Community member Posts: 3 Listener
edited April 2018 in Cerebral palsy
Hi i am the grandmother of a 9 month old little boy who hasn't got an official diagnosis as yet but we are about to be handed over to the cp alliance. My daughter & i have been pretty much left in the dark when it comes to information & support. It's good to be able to read other family's situations & know we are not doing anything wrong
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  • CaderMac
    CaderMac Community member Posts: 105 Pioneering
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    Hi @Mandy04 - welcome to the Community! 
    I'm sorry to hear that your family feel so in the dark at the moment, but you have come to the right place and I'm sure that there are lots of Community members who will be able to offer you some words of support and advice. 

    This similar post from @cordypants had some great responses which I thought might be a good place for you to start

    Cader x 

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  • Mandy04
    Mandy04 Community member Posts: 3 Listener
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    Thankyou so much Cader x
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  • reap123
    reap123 Community member Posts: 6 Listener
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    Does your grandson seem floppy when picked up? I know I was. I kind of looked like a wounded bat when crawling. Look for that if he crawls. 
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  • AlisonBrooks
    AlisonBrooks Community member Posts: 6 Listener
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    Dear Mandy.
    In my experience doctors can be slow to diagnose Cerebral Palsy. Sometimes it may be due to child being too young so they don’t want to give a false diagnosis. If there were issues at birth they should know if CP is a possibility. I would ask for a review with the paediatrician and ask them directly. 
    Floppy head, poor tone, not meeting milestones etc will all be signs but the doctors need to refer your grandchild for formal assessment and should agree to that. MRIs would usually show brain damage but need general anaesthetic. Doctors would only advise that if CP likely so there’s no unnecessary anaesthetic. 
    I am not sure where you live but would also mention Conductive Education. I am trustee of a local Nottingham charity. There are others around the UK that use conductive education which produces real results for children with CP. 
    Good luck And hope this has been useful. Once you know what the issue is you can better deal with any difficulties that might lie ahead. 

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  • Mandy04
    Mandy04 Community member Posts: 3 Listener
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    Alison Brooks we live in Australia nsw. Update on my grandson, so after months of tests including mri, lumber puncture, eeg, xrays, ultrasounds etc we still haven't got an actual diagnosis. We are waiting on genomic gene testing results but that could take some time. So we were being refered to the cp alliance but on Friday night/early Saturday morning my grandson took a turn for the worst. He is now in westmead childrens hospital in Sydney with complications with his liver, kidney's & his ck levels are through the roof so apparently we are not dealing with cp but something completely different. He has been in icu since sunday but had made slight improvements. Still a mystery as to diagnosis 
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  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
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    Hope he feels better soon x
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  • desperateforhelp
    desperateforhelp Community member Posts: 6 Listener
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    Aww , bless the little man, it must be like a living nightmare, knowing, he is becoming increasingly ill, yet medics are still unable to diagnose, you have my prayers, that a cause & treatment are discovered soon ! Courage and strength to you and your family ! Xx
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  • AlisonBrooks
    AlisonBrooks Community member Posts: 6 Listener
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    So sorry to hear that Mandy. I hope he gets better soon. Conductive education is still available for any neurological condition. We have lots of children with Down’s syndrome. Once he is well it’s worth looking into a local centre in Sydney. 
    Hoping ge gets better soon and they can identify the cause. 
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