one year old with Tubular sclerosis

Hi, my name is Adam.  I have a baby daughter suffering form seizures caused by TS.. I was just wondering if i could please get some advice on where to turn next and if anyone has information of good doctors in Australia that might be able to help us with our daughter.  She has been diagnosed with Tubular sclerosis when she was 3 weeks old and she just turned one a couple of weeks ago.  We cant get help and are sick of doctors who only feel that we need to go back every 6 months - 12 months.  We cant seem to find anyone who cares, or knows what they are talking about.  She has clusters of tumors on her brain which are causing seizures that have gotten worse in the last month.  

They vary in length and severity and change dramatically in what they do to her while she is having them. She is on medication, but it does not seem to be as effective anymore. The medication she is on is called Sabril Vigabatrin, she has 3.9 mil twice a day.  She is 10kg, we feel that the doctors dont have her on the correct dosage, this is when the different seizures have started (not her usual seizures).

Doctors have upt the dosage, but this does not seem to have helped.  We live in a small town and have to travel to see a doctor, which is no worries..but we have to wait for the doctors to clue themselves up on her condition and it is very frustrating!  Any response would be fantastic and very much appreciated!!!!