Narcolepsy in Australia

Just wondering if anyone can help me out with some advice. My 20 year old daughter was diagnosed with narcolepsy about 4 years ago, it has been a day to day struggle since that day. She completed her vce and has been going to uni but it has all got a bit too hard of late. She has put on a stack of weight over the last couple of years and stopped going to uni, the numerous drugs that she has been prescribed seemingly are not helpful. We are awaiting the arrival of Xyrem in Australia (however at $1000 per month it may be out of our reach), we have applied for a disability pension which has been knocked back initially. We seem to be continually banging our heads on a brick wall. She barely gets out of bed and seems to live her life in a permanent fog, I wouldn’t wish this condition on my worst enemy.

If anyone is having a struggle like us or any good tips on coping with this please share.