WFEN, I know he sounds bad and worsening, but it also sounds no worse than he HAS been, unfortunately. It's just how bad things are for this kid - last year was a disaster and from what I read, he sounded worse on the medications than now (believe it or not!). Paula, only you can gauge this. Feel free to correct me if I'm wrong.
Paula, it sounds like you've been busy. I hope the Westmead people call you back soon. If they don't, keep nagging. Ands tell them about what he's saying, and doing with the knives. Keep emphasising, you're scared he's going to hurt himself, you or his baby sister. You need URGENT help.
And from here, I'm going to explain how our health system works, so those of you with more experience in this sort of problem can have a better understanding of what resources we have (or don't), and maybe be able to help more specifically. Paula, tune out now if you want to. You probably know all this stuff. But if you want to correct anything I've written here, feel free. I may have left out something useful, my brain is mush tonight.
Risperdal - having medications approved for use, and having them on PBS, are very different things. PBS is our "Prescription Benefits Service", intended to make it affordable for the chronically ill, the disabled and the needy to have affordable medications. Anyone receiving our version of welfare gets REALLY cheap prescriptions, for all medications listed on PBS. Other people (everybody else) pays the maximum cost allowable for PBS medications - about A$24 this year. Our Federal government pays the rest of the cost to the pharmacist so he can buy the drugs from the companies in the first place. There is a huge amount of paperwork for him to do - who'd be a pharmacist? After you've spent about A$800 in a calendar year per family, you get your prescriptions at the welfare cost. At the end of each year it re-sets. But fewer and fewer medications are PBS-listed. Doctors still prescribe them, usually because the patient needs it, but some medications are more restricted than others. Sometimes medications which are identical chemically are not allowed on PBS because there's already another identical formulation on the PBS list. This means that if difficult child 3 can't take his PBS drug because it has been coloured with something he's allergic to, and we have to buy the more expensive competitive brand, we get charged the full (non-PBS) rate, whatever it happens to be.
Risperdal is one example of a drug which IS PBS-listed if the doctor rings up the Health Department and assures them, in writing, that you have schizophrenia. Then you can buy it at PBS cost. But if the doctor won't do that (because you have autism, not schizophrenia) then you pay A$70 a box. Yes, doctors are permitted to prescribe it, but who can afford it? In our family, we had two kids on it for a while. Fortunately, both were on a low enough dose so one box lasted us three months. Some medications are not permitted to be prescribed, except for certain conditions. The cost - it's determined independently, by a government determined to save even more money (crikey, you can tell who I'm not voting for next election, can't you?).
And our Federal Government right now is rolling in dough and WON'T spend it where it's needed - health and education.
MWM, when it's working well I really like our health system. The trouble is, it was brought in by a competing political party and THIS party seems to be deliberately watering it down and sabotaging it. It IS expensive to run, but as I said, we have a huge Federal surplus, the biggest in history. They can afford to do the job properly. But they don't.
We DO have choice of doctors except when we go to hospital and we have to take whatever doctor in the relevant specialty is on duty. In most cases, we will get to see the person we need to, if the problem is sufficiently specialised as in this case and Paula contacting Westmead. But remember, this is free, completely free, at the hospital level, if you go in as a public patient (which is what we do). We also pay for private insurance - it's our choice. With this, we can choose our own doctor in hospital, but our health fund then also charges an excess for various hospital services. Private insurance can get you admitted to hospital for elective surgery much more quickly SOMETIMES, but vital and emergency stuff is covered for free. So, for example - husband & I used our private insurance for obstetrics (our choice) but go public where possible (such as difficult child 3's attacks of croup and my aseptic meningitis). I've even been admitted to hospital, by my specialist, for free. Had my own room, too.
We CAN change GPs whenever we want to, but we have other problems which can mean that rare problems such as Paula's are often not handled well at the GP level. I have a brilliant GP but he is so popular he's hard to get in to see. We have a proliferation of medical clinics where it's much harder to get continuity of care. However, we can always insist. When we find a doctor we like, we CAN stick with him and come to some arrangement whereby they will bail us out of emergencies like this. It's not like Britain - we DO have a lot more choice.
A lot of doctors increasingly charge over the Medicare fee, because frankly our government simply isn't paying doctors what they're worth. That's why so many docs who bulk-bill (ie charge the government and not us) are such a poor standard. The good ones are often the ones charging more and the chronically ill can't afford it too often. Our paediatrician charges almost double the Medicare fee. We have to pay for the rest. Whatever we pay in all medical costs per year per family above about $2000, husband can claim back on his tax.
We have a once-good system, being ruined by a stingy government. But even our homeless people can get the same health care as a chairman of the board. Our big gap in decent services - dental. But they put fluoride in our water to keep that problem down.
There are resources we don't seem to have - I'd never heard of Residential Treatment Center (RTC) until I came to this site. I watched "Girl Interrupted" and wondered where she was, and why. We have rehab centres, drug referral centres etc but they are short on spaces. Our legal system is patchy and a mess, in my opinion. Our Community Health Centres are the free clinics for specialist services like Occupational Therapist (OT), speech therapy, psychologists and dentists, but with the absolutely stupid waiting lists and big restrictions on what they will do for you. So people on low incomes can get good quality doctoring and specialists via our hospitals, but little else without it costing heaps or waiting for ages. We get welfare payments to help us out if we're raising a Special Needs child (Paula, you HAVE applied for the carer whatever-it-is called-this-week for difficult child, haven't you?). Carer Allowance or Carer Payment, I can never remember which is which. One payment is big but means-tested, the other is smaller but not. You need the paediatrician to fill in part of the form, but otherwise it's up to you. You also get a health care card for him - pension-rate prescriptions, among other things. I've got one for difficult child 3. And our welfare system (programmed by our beloved leader) will generally refuse the application first time round, but will generally give in on appeal. They're just testing, to see how persistent you are.
I hope this helps.
And one final word on Westmead - the only problem I've ever found with it, is the food. It's ghastly. But the hospital where Paula took difficult child has the same caterers, so she won't notice the difference, if difficult child EVER gets admitted! (I know, I've had family at both hospitals, plus others in the area).
Hang in there, Paula (assuming you read this far!).
Marg