View Full Version : HI IM NEW HERE

16th August 2007, 09:47 PM

JUST A QUICK INTRO (you wish lol)

im the mother of 4...my 3rd child started having some sort of seizure soon after birth and these continued untill she was around a yr old, so spent most of her first yr in hospital trying to control these 'blue episodes' as they called them and figure out what was wrong with her.

at a few weeks old after one of these episodes she lost all muscletone and didnt seem to be herself...we later found out she had brain damage due to lack of oxygen at birth and recieved futher damage a few weeks later due to these episodes.

the episodes stopped and she came home, within the next couple of yrs threy told us she had severe global development delay cerebral paulsey and severe autistic spec disorder...
but shes a happy little lady and against all odds made herself mobile getting around in her own way bunny hopping on her knees...thats when i noticed she had a lump/raised area to the left of her spine
she was sent for an xray and told she had a very slight s shaped curve, probs due to her lack of muscletone, nothing to worry about it will sort itself out.

7 yrs later...she'll be 10 in september and despite my constant mention of concern about the lump/raised area looking bigger over the years they have only just give her another xray and are now saying she has scoliosis not due to cp. but that she was born with it. its an s shaped or double curv at 25, when it gets to around 50 sometime in the nr future/her teens she will have an op for it.

now she has been given a brace which they hope will slow it down slightly if anything (i havent used it as its making her unhappy and effecting the little mobility and quality of life that she has) and she has had an mri scan which i havent got the results of yet, they said its for checking for any nerve damage???

as you can see i havent been told much and its very frustrating when my daughter can not tell me if she is in pain with this or when she has the op weather she feels better or worse...plus her seizures have started again and i dont know if its anything to do with scoliosis. :nut:

argh sorry i just wrote a book above lol, i have so many questions unanswered

erm nice to find a forum i can understand, you all seem like nice people, look forward to getting to know you all :spin:

16th August 2007, 11:23 PM
Hi Joe-anne & :welcome: ,

Sounds like you have your hands full.


16th August 2007, 11:51 PM
hi thanks, yeah just a bit lol:)

17th August 2007, 12:45 AM
Hi Joe-anne,

I cant offer much advice but just want to welcome you. Im fairly new aswell and just getting my head round things.

Love Beth

5th September 2007, 01:11 AM
wow well im new here cant say much other then feel free to talk to me, im a teen that has recenlty gone through the brace ordeal, no surgery. Also "i havent got the results of yet, they said its for checking for any nerve damage???" scoliosis whether people now it or not can result in certain verve, digestive, liver or kindey and another organ system can be hurt by scoliosis. Hope that helps with that question a little bit.
Personaly mine was a freak thing as we dont have a medical records of my birth parents so we had on clue how rapid/the way it would turn out.
Good wishes and welcome!