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Sashy
08-04-2011, 20:03
Are there any mums here on the hub that have a baby or toddler with Cerebral Palsy? I want to know more about the dianostic criteia and how long it took people to get a firm answer.

My little boy Andrew is 17 weeks old tomorrow. He was a micropreemie when born at 24w2d weighing 765 grams. He had a reasonably good run with health after birth, was tried on CPAP at just 10 days old for a few hours at a time. The only major problem he had while in the NICU was an abscess in his belly that almost took him away from us. He recovered well and we were sent home 3 weeks before his due date.

We were warned that being so preemie that CP was a possibility (along with a multitude of other problems), he was distressed at birth, but did cry straight away.

Andrew is a twin. His twin sister passed away suddenly at 22w5d and the doctors really pushed me to abort the whole pregnancy. I'd been to hell and back, in and out of hospital from 14 weeks with bleeding and pre term labour. No way was I walking out of that hospital with nothing. Of course I had to sign a zillion pieces of paper absolving the hospital of negligence if I or Andrew died.

We have found he has 80% hearling loss in his left ear, the right seems to be ok. But the doctor expressed concern that at 16 weeks of age, 1 corrected age, he still has little to no control of his head. I can't put him on his tummy because he simply cant' pick his head up.

He is still have apneas of prematurity and we are hoping that they settle soon.

Is it possible that carrying both babies caused this? That his deceased sister caused a toxic environment?

The specialist in Melbourne has asked us to keep a diary of milestones or changes to be reviewed in 3 months.

Thanks in advance to anyone who managed to get through all that and not :sleeping:

faroutbrusselsprout
08-04-2011, 20:13
I have no advice, I'm sorry. Just wanted to offer some ((((hugs)))).
Wishing you and Andrew lots of love and strength.

Sashy
08-04-2011, 20:29
Thank you very much for the kind words. This was Andrew the day he was born: http://www.facebook.com/photo.php?pid=159427&l=aea8f94b77&id=100001643098483

And this is him now: http://www.facebook.com/photo.php?pid=316627&l=6fe4286ed2&id=100001643098483

share a book
08-04-2011, 20:34
He is beautiful! such a little newbie :goodvibes:

I'm not sure of what's "normal" my bub wasn't prem but he is such a little cutie!

I hope it all works out :hugs:

scarlett41
08-04-2011, 20:42
No direct advice I'm sorry but I just wanted to give you hugs:hugs: and to tell you a bit about my story....

I have cerebral palsy. Very slight, when I was younger I did some research and found that I would be classed as catergory 7 (1 being the "worst") but that has never been back up by a doctor.
Basically my left side doesn't function properly. The paralysis is in the motor cortex and my intellectual capacity is fine. Physically my left side's growth is stunted and visibly smaller than me right. I have a constant tingle in my left side and have severe flow on effects from it. The main lifestyle effect is that I cannot drive a manual car (which all my DHs friends think is the end of the world as we know it:rolleyes:)

My mum first noticed something was wrong when I started to walk. My milestones were slightly behind but as I'm the oldest no one thought it was strange. When mum raised the fact that I walked on my tip toes the GP told her she was being an over-protective first time mum (despite the fact that by this time I was 15 months old and she had another 3 month old baby-incredible she noticed something was wrong!!!). In the end after 12 months of denial from doctors my aunty's FIL, who was a doctor, gave mum a referral to a friend of his in the city. This paediatric orthopedic surgeon took one look at me walking and said "that girl has cerebral palsy". Just like that. I had surgery to lengthen my achilles tendon at age 3.

All my love and prayers to you and Andrew. Obviously I am lucky to have "gotten off lightly" and I hope that if Andrew does have CP it is like mine (of course no CP would be better). I just wanted to let you know that there are many forms of this condition-not all of them terrible. Have you contacted "Scope" for more info. They may be able to put in touch with parents who have actually gone through this.
:hugs::hugs::hugs: