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kaylabumbis View Drop Down
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    Posted: 29 January 2009 at 12:24am
We found out not so long ago that my 20 month old boy suffers from cerebal palsy....
does anyone else child suffer from this as well and what can we expect in the coming months.
thanks heaps
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BuzzyBee View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote BuzzyBee Quote  Post ReplyReply Direct Link To This Post Posted: 29 January 2009 at 12:30am
I'm sorry I have no advice, I just want to offer lots of these

Is it quite common for cerebal palsy to be picked up this late?

Hopefully someone on here can give you the answers you are looking for.
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kaylabumbis View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kaylabumbis Quote  Post ReplyReply Direct Link To This Post Posted: 29 January 2009 at 12:35am
He has always been behind in his milestones and under a pead and dietician. Was quite a huge shock though to hear that he has it. He thankfully isnt at the bad end of the scale.
He is very clumsy and at the moment is sporting a lovely snapped collarbone and just doesn't speak.
He is a wee sweetheart though and i dont think i would change him for the world....flaws and all.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote BuzzyBee Quote  Post ReplyReply Direct Link To This Post Posted: 29 January 2009 at 12:44am
Poor wee tike, I just went on the NZ official website to have a read, eek it makes you wonder sometimes how they can properly diagnose these kind of things when kids are still so young (and all developing differently)- i was looking at the milestone charts and my boy doesn't do much of what they have written for 18 months and he's nearly 2years.

Good to hear Jordy isn't at the bad end of the scale, are there any support groups you can join for it? Meet up with other mothers/children etc
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kaylabumbis View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kaylabumbis Quote  Post ReplyReply Direct Link To This Post Posted: 29 January 2009 at 12:50am
I know there are support groups out there etc. I think we will be put in touch with them after his first occupational or physio therapy.
He has to have a MRI done as well to see how bad the damage is to his brain.... what is involved with that.
Jordy couldnt hold his head up until he was about 6 months old. He started walking at 18 months old...lazy little imp lol.
He isn't stupid he understands completely what you are saying and will do something if you ask him, he just can't vocalise and isnt as strong in his right side.
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james View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote james Quote  Post ReplyReply Direct Link To This Post Posted: 29 January 2009 at 6:36am
big hugs hun my wee boy was dignosed at 2 years with vocal and moter dyspraxia The shock is still sinking in and was relly hard to sink in big hugs hun if ypou need someone to talk to (or cry with) just pm me and i wouldnt change james for the world either
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Post Options Post Options   Thanks (0) Thanks(0)   Quote caliandjack Quote  Post ReplyReply Direct Link To This Post Posted: 29 January 2009 at 7:26am
My little niece was born with a small amount of cerebal palsy due to being prem, she's now 7 and will start her 3rd year of school she's thriving and doing really well.
She's caught up with a lot of her peers, she wont be the brain box that her big sister is but she is learning.
For her I think the issues were mostly physical ones.

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kebakat View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kebakat Quote  Post ReplyReply Direct Link To This Post Posted: 29 January 2009 at 7:44am
My cousins son has it. He has a fairly mild version and basically is just a little slow in his development and had trouble with one leg/foot. The leg has been fixed through operations I believe but developmentally he's 5 and at school and doing quite well.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MrsMojo Quote  Post ReplyReply Direct Link To This Post Posted: 29 January 2009 at 8:12am

My 33yo brother has cerebral palsy.  But as I am a couple of years younger than him I can't really give advice on dealing with it day to day as for me life never changed, it's just the way my bro is.

He is very high functioning and at an assessment a couple of years ago the specialist commented that he's never met anyone with brain damage as extensive as my brothers who lives so independantly.  I think my parents can take huge credit for that because they never treated him differently to the rest of us. He had the same rules and expectations within his limitations just like the rest of us.

Growing up he did a lot of extra activities.  He did riding for the disabled and was a member of CCS and IHC, he also saw a physiotherapist as a toddler/preschooler to help him learn to walk (which the doctors said he wouldn't be able to do) and a speech therapist to help him talk (another thing the doctors didn't think he'd manage), he continued with the speech therapist until he was a teen.  He was in a normal class at school but he had his own tutor who came to classes with him and he was allowed to use a typewriter (although I guess nowadays it would be a laptop).

My brothers cerebral damage is extensive so he's probably at the high end of the spectrum for assistance and I've heard of other people with cerebral palsy that you wouldn't know unless someone told you. 

 

NB. Steph, CP can occur at anytime during pregnancy, birth or up to 3yo.  My brother didn't get CP until he was nearly 1yo.  At 9mo he was diagnosed with cancer and had a cyst surgically removed from his head and chemotherapy to treat it.  The chemo (and possibly the surgery) caused the damage to his brain. 

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susieq View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote susieq Quote  Post ReplyReply Direct Link To This Post Posted: 29 January 2009 at 8:43am
Yes I would say get involved with CCS and IHC and if you are in Auckland get in touch with parent and family resource centre in Onehunga, they may be able to put you on to other parents or parent to parent as well
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kaylabumbis Quote  Post ReplyReply Direct Link To This Post Posted: 29 January 2009 at 9:28am
I am in chch which has the bonus of Champion centre.
Looking at Jordy you wouldn't know that he has it. He does hang his hands a bit funny. He just sort of grunts to talk.
But is always singing in a low monotone. He also has a mega big fontanelle which is still bigger than the old 50ent piece.
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