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difficult child is up to old tricks
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<blockquote data-quote="Marguerite" data-source="post: 107534" data-attributes="member: 1991"><p>And therein lies the rub, Sara. I agree the testing is needed, but for that you need to be referred to one of the major children's hospitals, and most of these docs sound like they're approaching cautiously. Doing tests like that on a very young child - they don't like ordering them lightly because some children who are difficult, will not take kindly to MRI or CT, for example, because of the claustrophobia in the tunnel. </p><p></p><p>Someone suggested to us that difficult child 3 have a functional MRI; the pediatrician was going to order it on my request but was concerned how difficult child 3 would cope with it, said he probably would need to be sedated. And we have a darn good pediatrician (not the best, just way up there).</p><p></p><p>The other problem doctors are facing in Australia, is HIC - the Health Insurance Commission. This is the body that supervises our national government-based health insurance, Medicare. Some doctors (mostly no longer practising) would see a tricky case walk in the door and order every test they could think of, to get a diagnosis fast. And do that with every patient. This, naturally, was causing a blowout in the national health budget. So HIC was formed to oversee and scrutinise for this behaviour. Because our system is so thoroughly nationalised, every person in the country has a Medicare number. In most cases, under-age members of a family and partners have the same number, just a different sub-number (place on the card - a family pecking order, if you will). This means that medical treatment and tests ordered for each patient can be tracked in a national HIC database - and it is. When a doctor's rate of test-ordering goes above a certain level depending on the number of patients he has - a red flag is raised. Similarly, a doctor's prescribing history is also red-flagged.</p><p>So a doctor faced with a kid like wolonfab's will go more cautiously than I feel he should, purely to protect himself.</p><p></p><p>Some doctors like our paed are braver, because he's run the gamut so many times before.</p><p></p><p>A doctor who is flagged has to appear before a committee of his peers and justify his actions. Because our paed has a very high proportion of ADHD kids, he gets flagged often for prescribing stims to the majority of his ongoing patients and each time he has to point out that his reputation as a paed specialising in ADHD means that data in his case is skewed and this is all legitimate.</p><p></p><p>But a lot of doctors are scared to do anything out of the ordinary, for fear of having to appear before a committee.</p><p></p><p>A hospital, especially a large teaching hospital, has more leeway simply because more patients go through their doors. The occasional 'out there' tests don't show up on the radar purely due to the very large numbers.</p><p></p><p>This brings us to wolonfab's next problem - why doesn't she just take her son to one of these large hospitals?</p><p>The structure is heirarchical. To try to get an appointment (as you in the US could make an appointment at the Mayo, for example) is not easy. Most people go private - this means that although some of the doctor's fee is covered by medicare, the rest is not. We have to pay out of pocket and hope to claim it back in tax later. In some cases the doctor will only charge the Medicare fee (which is 85% of the set fee) but this is rare with specialists. So a lot of people try to use the public system, which is a system of hospital emergency departments and special "area health services". The need is so great across the country, that these routes are overwhelmed and people are sorted into area.</p><p>Wolonfab's family is in an area away from the bigger teaching hospitals. So she has to go through an area health service (as we did - ours is a different area) and frankly, they are unsatisfactory. Treatment is very conservative, there are waiting lists over a year long at times and only aftre they've seen you for some months (or more) AND are prepared to admit this is a problem they are not able to help with, will they try to refer up the ladder to someone more expert. This involves more waiting.</p><p></p><p>The teaching hospital I mentioned is one of the best. They could help. But if you just turn up at the clinic, they'll turn you away. You have to be referred there by someone who has already tried everything and admitted defeat (and it's easier for a lot of doctors to duck out of tis one because they'd rather say that the kid really isn't that bad, than admit to a colleague that this is a tricky case).</p><p></p><p>I suggested taking the boy to the emergency department of that hospital. This would be much more pot luck, you would have to hope that the paed registrar on duty is canny enough to spot a serious problem and call in someone more expert. THEN you might get somewhere. But you'd have to have a good excuse for going to a hospital that is so far from where you live - "we were visiting a friend when this started" is about all you could say. Otherwise, a paed registrar would (rightly) suspect that you are a routine case (not an emergency) who has deliberately travelled out of area as a result of pure desperation, and would send you home with a couple of paracetamol and tell you to call your GP in the morning.</p><p></p><p>The system generally works very well, for 90% of cases. But sites like ours are also magnets for those cases which are in the 10%, where problems are just not getting picked up.</p><p></p><p>And why am I referring to paediatricians? Because in Australia, that's who deals with this sort of problem. I've not found any Aussie neuropsychs. Mind you, some of our paeds are of that standard.</p><p></p><p>Getting back to Sara's suggestion - it would be interesting to see the paed's reaction to you asking for that testing. He does have the power to refer you for an opinion, he does have the power to order the tests (or to refer you to someone who can order the tests).</p><p></p><p>Wolonfab, I'm assuming (from things you've said in the past) that you have given up on the clinic route and are seeing this paed as a GP referral. If so, you do have choice to change paed. Technically you could drive to the other side of the city, if you chose. It's just such a darn big city. It might be an idea to at least shop around for the best of the best when it comes to helping with difficult diagnosis's, at least for an opinion. I have a few names in mind, if you want to pm me. One that we saw (for an opinion) - he was able to at least send difficult child 3 in the right direction. He was based in Concord. Sends all his reports out printed on electric blue paper, but was VERY sharp, very cluey. He calls himself a "child, adolescent and family psychiatrist" on his letterhead. We took everybody in to see him, I wanted him to see the whole dynamic so he could see what was familial and what was downright weird. We only saw him once. He wrote a report (very easy to find in our files!) which we were able to use to get Special Education support as well as short-cut to getting the right ongoing medical supervision. before that we were running around seeing just about every idiot in Sydney who was curious but inept.</p><p></p><p>With the description I've given you, you might find him yourself (Google White Pages with the professional description) or I can give you more specific stuff by PM if you want.</p><p></p><p>The only other thing I can think of is definitely last resort - call Alan Jones? I'm only half joking.</p><p></p><p>Marg</p></blockquote><p></p>
[QUOTE="Marguerite, post: 107534, member: 1991"] And therein lies the rub, Sara. I agree the testing is needed, but for that you need to be referred to one of the major children's hospitals, and most of these docs sound like they're approaching cautiously. Doing tests like that on a very young child - they don't like ordering them lightly because some children who are difficult, will not take kindly to MRI or CT, for example, because of the claustrophobia in the tunnel. Someone suggested to us that difficult child 3 have a functional MRI; the pediatrician was going to order it on my request but was concerned how difficult child 3 would cope with it, said he probably would need to be sedated. And we have a darn good pediatrician (not the best, just way up there). The other problem doctors are facing in Australia, is HIC - the Health Insurance Commission. This is the body that supervises our national government-based health insurance, Medicare. Some doctors (mostly no longer practising) would see a tricky case walk in the door and order every test they could think of, to get a diagnosis fast. And do that with every patient. This, naturally, was causing a blowout in the national health budget. So HIC was formed to oversee and scrutinise for this behaviour. Because our system is so thoroughly nationalised, every person in the country has a Medicare number. In most cases, under-age members of a family and partners have the same number, just a different sub-number (place on the card - a family pecking order, if you will). This means that medical treatment and tests ordered for each patient can be tracked in a national HIC database - and it is. When a doctor's rate of test-ordering goes above a certain level depending on the number of patients he has - a red flag is raised. Similarly, a doctor's prescribing history is also red-flagged. So a doctor faced with a kid like wolonfab's will go more cautiously than I feel he should, purely to protect himself. Some doctors like our paed are braver, because he's run the gamut so many times before. A doctor who is flagged has to appear before a committee of his peers and justify his actions. Because our paed has a very high proportion of ADHD kids, he gets flagged often for prescribing stims to the majority of his ongoing patients and each time he has to point out that his reputation as a paed specialising in ADHD means that data in his case is skewed and this is all legitimate. But a lot of doctors are scared to do anything out of the ordinary, for fear of having to appear before a committee. A hospital, especially a large teaching hospital, has more leeway simply because more patients go through their doors. The occasional 'out there' tests don't show up on the radar purely due to the very large numbers. This brings us to wolonfab's next problem - why doesn't she just take her son to one of these large hospitals? The structure is heirarchical. To try to get an appointment (as you in the US could make an appointment at the Mayo, for example) is not easy. Most people go private - this means that although some of the doctor's fee is covered by medicare, the rest is not. We have to pay out of pocket and hope to claim it back in tax later. In some cases the doctor will only charge the Medicare fee (which is 85% of the set fee) but this is rare with specialists. So a lot of people try to use the public system, which is a system of hospital emergency departments and special "area health services". The need is so great across the country, that these routes are overwhelmed and people are sorted into area. Wolonfab's family is in an area away from the bigger teaching hospitals. So she has to go through an area health service (as we did - ours is a different area) and frankly, they are unsatisfactory. Treatment is very conservative, there are waiting lists over a year long at times and only aftre they've seen you for some months (or more) AND are prepared to admit this is a problem they are not able to help with, will they try to refer up the ladder to someone more expert. This involves more waiting. The teaching hospital I mentioned is one of the best. They could help. But if you just turn up at the clinic, they'll turn you away. You have to be referred there by someone who has already tried everything and admitted defeat (and it's easier for a lot of doctors to duck out of tis one because they'd rather say that the kid really isn't that bad, than admit to a colleague that this is a tricky case). I suggested taking the boy to the emergency department of that hospital. This would be much more pot luck, you would have to hope that the paed registrar on duty is canny enough to spot a serious problem and call in someone more expert. THEN you might get somewhere. But you'd have to have a good excuse for going to a hospital that is so far from where you live - "we were visiting a friend when this started" is about all you could say. Otherwise, a paed registrar would (rightly) suspect that you are a routine case (not an emergency) who has deliberately travelled out of area as a result of pure desperation, and would send you home with a couple of paracetamol and tell you to call your GP in the morning. The system generally works very well, for 90% of cases. But sites like ours are also magnets for those cases which are in the 10%, where problems are just not getting picked up. And why am I referring to paediatricians? Because in Australia, that's who deals with this sort of problem. I've not found any Aussie neuropsychs. Mind you, some of our paeds are of that standard. Getting back to Sara's suggestion - it would be interesting to see the paed's reaction to you asking for that testing. He does have the power to refer you for an opinion, he does have the power to order the tests (or to refer you to someone who can order the tests). Wolonfab, I'm assuming (from things you've said in the past) that you have given up on the clinic route and are seeing this paed as a GP referral. If so, you do have choice to change paed. Technically you could drive to the other side of the city, if you chose. It's just such a darn big city. It might be an idea to at least shop around for the best of the best when it comes to helping with difficult diagnosis's, at least for an opinion. I have a few names in mind, if you want to pm me. One that we saw (for an opinion) - he was able to at least send difficult child 3 in the right direction. He was based in Concord. Sends all his reports out printed on electric blue paper, but was VERY sharp, very cluey. He calls himself a "child, adolescent and family psychiatrist" on his letterhead. We took everybody in to see him, I wanted him to see the whole dynamic so he could see what was familial and what was downright weird. We only saw him once. He wrote a report (very easy to find in our files!) which we were able to use to get Special Education support as well as short-cut to getting the right ongoing medical supervision. before that we were running around seeing just about every idiot in Sydney who was curious but inept. With the description I've given you, you might find him yourself (Google White Pages with the professional description) or I can give you more specific stuff by PM if you want. The only other thing I can think of is definitely last resort - call Alan Jones? I'm only half joking. Marg [/QUOTE]
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