Diagnosis for CP

Here parents of children with Cerebral Palsy can post questions about caring for their child and get advice on special needs and care.

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fionac
Posts: 1
Joined: Wed Jan 15, 2014 6:10 am

Diagnosis for CP

Postby fionac » Wed Jan 15, 2014 6:13 am

Hi there. My name’s Fiona and I have a 19 month old daughter. She had a pretty uneventful birth but very high bilirubin for a long time. She was just below the threshold for the lamp therapy (literally just) so they didn’t use it, but this did mean she was jaundiced for about 2 months.

She can’t roll over or sit up on her own -she has never pulled herself up. However, she can bum shuffle (at quite a speed) and if she is placed in a sitting position is unlikely to fall over. In addition, she hasn’t started speaking yet really – there have been occasional words but then never really repeated. Her main “go to” noise is “mah”.

I wonder if it’s ataxic CP and am pretty worried. We have physio this Friday and another paediatric appointment later this month. What are the thoughts of the forum? Am I totally over reacting? Is there anything we can ask to make diagnosis either way occur more quickly?

Nicky
Posts: 2
Joined: Thu Mar 13, 2014 2:30 pm
Location: Uk

Re: Diagnosis for CP

Postby Nicky » Thu Mar 13, 2014 4:02 pm

Hi

I'm Nicky I have Ataxic cp, your daughter sounds similar to myself at that age. My advice is to not worry. The doctor told my mum and dad I would never walk and tork.
But dispite some difficulties I I can walk and tork and I'm able to get my point across.

TrishlaCP
Posts: 59
Joined: Thu Nov 26, 2015 4:41 am

Re: Diagnosis for CP

Postby TrishlaCP » Tue Jan 12, 2016 3:25 am

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Handsome Copy
Posts: 2
Joined: Fri Feb 19, 2016 10:49 pm

Re: Diagnosis for CP

Postby Handsome Copy » Fri Feb 19, 2016 11:26 pm

This sounds exactly my son. He's almost 3 years old now, in June. Even now, he still doesn't talk. He babbles all the time, and the only verifiable words he says are "hi" and the same "mah" as well. He did need the bilirubin light for about a month. He never did sit very well, still doesn't sit on his butt, he needs one of his legs behind him to balance. He did the one-legged army crawl for a long time though. He was quite fast it too. We have started considering that he is ataxic just based off of all his behaviors. He does walk, but it's highly uncoordinated. Like a drunken toddler. It gets really bad when he's upset, sometimes he hurts himself because of the severe lack of coordination while he's throwing a fit.

He's seen so many doctors, I don't even know anymore. But the nurse of the last doctor let us in on a little fact. Apparently doctors will not diagnose an issue, especially in little kids, when they don't know for sure. I'm sure it's to avoid lawsuits or getting their license revoked. But it's frustrating for us as parents to not get a diagnosis so we can start on proper treatments and therapy. We've gone around in circles trying to find something concrete. We even switched his primary care doctor because they apparently gave up on him.

So I am totally with you there and wish to seek the same answer if anyone knows the correct way to get to the diagnosis as well.