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Lack of Diagnosis

jasonlucy666jasonlucy666 Member Posts: 3
edited August 2016 in Parents and carers
I had my son Harry & his brother Charlie at 27+4 weeks, Harry suffered with a brain hemorrage, which led to Hydrocephalus & he now has a vp shunt. We were also told he was at a greater risk of Cerebral Palsy, his movents in his arms etc are quite rigid. He does now get physio every 2 weeks, but all any professional I have seen says is he is stiff! He is now 8 months old & stll all I'm told is he is stiff at what sort of ages have other people had diagnosis please?
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Replies

  • renacahillrenacahill Member Posts: 145
    We got the diagnosis at 6 months, but had been having weekly physio since birth, as it was a traumatic birth so c.p. was expected.
  • imogen37imogen37 Member Posts: 61 Listener
    Hi

    we had a diagnosis at 1 year, but really had to demand for it. Looking back, the professionals had known for a while my son had CP, just not told us.

    x
  • mollymoobarnesmollymoobarnes Member Posts: 107
    Hi

    I had my boy/girl twins at 32 weeks and after a very tough 11 months my little boy, who until this point had just been diagnosed as a colicky baby (really? Colic for 11 months?!), was confirmed to most likely have Cerebral Palsy. Quadriplegic spastic CP was confirmed by MRI scan at a year of age.

    In my experience, doctors don't really like to admit that anything might be wrong unless a) you keep coming back to them again and again with your concerns and you don't just go away and accept their vague wishy washy-ness and b) that your little one is obviously missing big milestones at the 10 month check. Then once you do get them to listen properly and they realise you might be right you have to wait until your child's first birthday because MRI scans show much more detail once your child gets to this age.

    I found the whole thing just awful - I could see he was developing differently, I could see it wasn't just colic, he FELT different to his sister and yet despite numerous visits to neonatal docs at the hospital, they still missed (or were turning a blind eye to) all the classic signs our boy was showing that he had CP. Had I known what the classic signs of CP were, alarm bells would have rung for me but seeing as I knew nothing about CP, the penny didn't drop until I Googled some of his symptoms and saw the Scope CP info page. At that point in my heart I knew.

    I personally think that they avoid making any mention of CP until a year so that the MRI can show it for sure. I guess it would be pretty awful to tell parents that their child has CP and it turns out that they were wrong.

    I wish you lots and lots of luck - our twins are 3 now and will be starting school next year. They are both marvelous funny little individuals leading full lives. Our little man needs lots of help but he's bright as a button, funny as hell and has a great relationship with his twin sister and his older sister who is 5.

    Maria xx

  • jasonlucy666jasonlucy666 Member Posts: 3
    Thank you all for your replies, I think im going to have to push more for answers! Harry is Seeing his neurologist in Oct so maybe she can shed some light. He is developing differently to his brother so I know there is something and im pretty sure it is CP.
  • jasonlucy666jasonlucy666 Member Posts: 3
    Thank you for your reply its good to hear your son is such a little character, I will certainly be doing more pushing for answers now so that I can give Harry all the extra help that he needs.
    Lucy xx
  • Sam_ToucanSam_Toucan Member Posts: 25 Connected
    After much pushing by his mother, we got an ultrasound for Daniel at 6 weeks of age. This showed brain damage which was confirmed by MRI a couple of weeks later. The MRI looked horrible - even I could tell that half his brain was affected yet still all the doctor said was "Extremely high risk of developing cerebral palsy".

    I'm not sure this counts as an official diagnosis, but it was enough to get a referral and start therapy which is what really matters.
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