I'm so sorry that you're going through all of this. While I'm here in the states, and am TOTALLY ignorant on the Australian health care system, AND there isn't much input or light that I can shed, I hate feeling useless.
I did a search and found the following links:
Connecting Australia's seriously ill and autistic children ...
http://www.starlight.org.au
http://www.continence.org.au/
http://www.apexfoundation.org.au/
(thought this might help track down someone reliable)
I honestly don't know if it will help - I truly hope it does.
Beth
PS: Feel better!
