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Old 06-03-2010, 03:47 AM   #1
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To diagnose???

Do you think a diagnosis is important for people with CP? For me it was such a relief when a doctor gave a name to what was happening to my son. It opened up so much support and charities (in the UK) seem so much more helpful to funding equiptment with a diagnosis. I see a friend struggling without one, and they are sure that it is CP. He is too young to tell me yet how he feels about it, how do you feel as parents of children with CP and as those with CP? Is it hepful / Unhelpful to you?

Last edited by Basswife; 06-03-2010 at 03:48 AM.

 
Old 06-03-2010, 06:50 PM   #2
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Re: To diagnose???

I know in Australia it is also helpful to have a diagnosis to help with funding and support. Even something as simple as filling in paperwork.

At first I was reluctant to have the MRI done as it required a general anaesthetic and I was of the opinion 'what's done is done the findings of an MRI isn't going to change anything'. But eventually we came around, our paediatrician specialises in developmental medicine and is one of the leading doctors in this field in Australia. She told us how the results can help future research, help know what area of her brain we are dealing with etc etc (can't remember all her info now).

But no one expected the results of that MRI to be normal considering how affected my daughter is, it really threw us for six. That's when we started on the journey of ruling out all other possibilities. I was terrified it was some life limiting disorder but thankfully all of the tests came back clear.

My paediatrician explained how a small percentage (9%) of children with cp have normal MRI's and they never really find a reason for their disability. My daughter is also nick named the 'Mystery girl' because she doesn't present as a 'typical' cp child. Her speech is clear, her intelligence is high, she has no drooling or swallowing issues. Her hands and arms are quite affected yet she can still manage to draw and colour in (between the lines), use threading boards, stack things etc, she even amazes her OT.

She is classed as a Level 4 on the GMFCS classification which basically means she'll probably never walk independently. She still can't get up from prone by herself, but she has learnt to bunny hop crawl around the house.

Having her diagnosed as Quad CP Level 4 although sounds depressing is benificial when it comes to getting help with her school years. She starts 4yo kinder next year and will qualify for an extra aide for the room. And when she goes to Primary School she will qualify for her own full time carer to be with her whilst she's at school.

You mention about your friend who's child hasn't yet got a diagnosis. There are a couple of families we see at hydrotherapy every fortnight who's children haven't yet recieved a definate diagnosis. I do feel very sorry for them, although I would have thought them to be CP apparently they aren't, so I'm not really sure what proceedure the doctors use to say one child is and one child isn't.

I wish your friend luck in getting a diagnosis.

 
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