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<blockquote data-quote="Marguerite" data-source="post: 291225" data-attributes="member: 1991"><p>Katlin, you have started a very interesting discussion that does come round every so often.</p><p></p><p>Here is an Aussie perspective - different, because here our health system is highly subsidised. However, we also do have private clinics which do charge an arm and a leg for sometimes questionable treatments. They are often one step ahead (if that) of our regulatory bodies. However, we also have approved public hospital clinics where accredited, peer-reviewed research on exactly this topic is going on.</p><p></p><p>I've had experience with both, I've attended seminars with both, I've published articles by writers from both camps. And I tell you - the more the officialdom brakes are off, the more outrageous become some of the claims. Not only the diagnostic claims, but also some of the treatment claims. I won't list them here, some of them are just too gross. </p><p></p><p>One specialist I had "sold" to me was in my opinion a raving loony. He was an idealist and may have been on to something for some people, however. He just tried to apply it to everybody, he would do every test possible on every person who walked through the door and finally our health care system said to him (as they say to many doctors) - "If you can't justify those tests you have ordered retrospectively, you will have to pay us back for all the tests you have ordered for the past two years."</p><p>This unfortunately scares off some good but more balanced doctors from doing tests that ARE needed.</p><p></p><p>Cost is the issue for us in the Aussie health care system. The national Medicare budget is blowing out. But there is still scope within the public hospital system (which while technically not "free" is bulk-billed and therefore paid for out of the Medicare levy in our taxes). Doctors and specialists who work in the public health system are employed on salary. They not only see patients, they do research through their clinics. The research HAS to be arranged through strict Ethics Committee channels as well as other scientific rules needing to be followed. Research has to be double-blinded, but before the double-blinded trials, we get the pilot study. That is when a doctor can say, "I think your child could be lacking certain minerals or vitamins, I want to find out and see if we can help." The pilot study also has to be approved and meet strict scientific controls, but there are good reasons for this - once they have demonstrated that their ideas are right (and this MUST be done scientifically) then they publish the results (brownie points for the specialist, not money) and then other specialists around the world can share in this knowledge.</p><p></p><p>The raving loony I mentioned - he would customise treatment for his patients according to each person's individual measured deficits, then he would manage each case individually. He was never able to publish because he never wrote a decent research protocol that reputable journals would touch. It had nothing to do with drug companies - we have companies here who market herbal remedies who have done double-blinded studies - I actually took part in one but had to drop out because I developed a reaction to the treatment.</p><p>I have other (conventional) specialists who openly recommend herbal treatments to a lot of their patients (for example, the urologist who tells his patients to take cranberry capsules).</p><p></p><p>Now to this particular hospital clinic - it is in Sydney, it is overseen by an pediatric immunologist in conjunction with a dietician. There is another immunologist on board who actually has a reputation of shutting down the raving loonies. And Katlin, I'm not saying your daughter was treated by the raving loony sect - not at all. Only that because the raving loonies are out there, it makes it very difficult for the genuine helpers to really give the help they can without being attacked.</p><p></p><p>Now this Sydney clinic were doing a research study into Pervasive Developmental Disorder (PDD) and the effect of modifying diet. difficult child 3 got referred there by our GP (standard approach) after I had heard about this mob through our local autism network.</p><p>The procedure - we had to attend the clinic with the reports proving the diagnosis. Then we met with the pediatric immunologist there so she could comfirm the diagnosis for herself. After that we were handed over to the dieticians who went through the issues in detail with us. We were told that they had already demonstraed statistically that in about 30&#37; of Pervasive Developmental Disorder (PDD) cases, changing diet (and in some cases replacing with supplements) brought about an improvement in behaviour.</p><p></p><p>The procedure was onerous and it is difficult to explain here - I've tried a few times but it is just too complex. When I say "diet" or even "elimination diet" or "food sensitivity" people think I'm saying that if you put your child on a healthy, all-natural diet that will be all that it takes. It's not. it's far more than that and frankly, at times the child will not be eating a balanced diet at all, certainly not one that you would accept as healthy. But for this process, it is a necessary step in order to assess exactly which chemicals, including NATURAL ones, are possibly causing problems for your child.</p><p></p><p>And only 30% could be helped - I found that interesting. But worth chasing after, especially as all it cost us was the petrol to drive there. They even gave us vouchers to pay for the parking station. The procedure was to be - ensure we had eliminated all possible problem chemicals (a long and detailed list) and then slowly reintroduce them. We had to monitor the behaviour with a detailed diary as well as list absolutely everything he ate, in detail. It took several months. After that, the double-blinded part of the study came in. We were given a box of capsules and when difficult child 3 was stable, we were to try each capsule in strict number order. The staff didn't know what was in each capsule and neither did we. Only the computer knew and the code was not to be broken until after we had completed the study. All we knew was that the full range of problem chemicals as well as placebos were in that range of capsules.</p><p></p><p>At this point we parted company (on friendly terms) with the research - we were finding that even on the most restrictive diets, the problem behaviours (which at first had seemed to be responding) were in fact environmental in trigger - the nasty variable in our case was stress, especially stress from school attendance. It was a variable we were to take another six months to deal with. </p><p></p><p>In other words - we were in te 70% of cases for whom this did not work.</p><p></p><p>I have mentioned the name of this research team in the past but I am not doing so here. Anyone who wants to PM me so that can track their publications - feel free. Their research into diet is ongoing. They're not always working with autism.</p><p></p><p>Currently the autism research we're following is through another research team who are trialling oxytocin to see if it helps with social skills and also possibly learning. We still haven't been told which of the two one-off nasal sprays difficult child 3 had, was the placebo and which was the oxytocin. But he has his suspicions, he felt he definitely performed a lot better with one than with another. </p><p>On Friday we go back for the next phase of the trial - the month-long home-administered supply of oxytocin. Again, we will be given two supplies one after the other - one will be oxytocin, the other will be placebo (normal saline). We have to keep strict records of our observations and there are interviews to attend also.</p><p></p><p>Research is how this sort of thing should be developed. The raving loony doctors do the "lick it and see methods" but then, so do researchers, intially. But from there it differs. ANY researcher can make an observation and say, "My, this is interesting!" but what turns it into research from there is the well-written proposal, the "Let's find out abouth this properly and remove as many variables as possible, we have to go slowly and carefully but it will be worth it because we will then be able to help a lot more people in the long run."</p><p></p><p>Meanwhile the raving loonies say, "Wow, this is interesting! I really want to help people NOW, I'll just make a stab at it and over time we'll continue to perfect this for each individual. Of course we can't take the time to research it more meticulously, people have to be helped now!" I</p><p>The problem with this approach is, you're never certain if people really ARE being helped by your treatment, or by your besdide manner, or by something else entirely random. Such doctors often don't have measures for success that make sense to others - I've known raving loonies who judge success by the number of people who don't return for further treatment. "They didn't come back, so I must have cured them."</p><p></p><p>There are also those doctors in between, who discover something thet think will make them either rich, or saviours of mankind, preferably both. They jealously guard their knowledge and while they may do what passes for legitimate research, their increasing paranoia over not wanting to share their knowledge also often means they lack the independent peer review that such work needs, to be given legitimacy. And by lacking that peer review they can make some really stupid mistakes. 've seen these people presenting their findings at conference and they can't see what is wrong with rearranging their subjects AFTER the work is done, in order to keep fiddling the data until they can get statistically significant results. "Hmm, the results weren't significant enough. Maybe if we only look at data from those people under 40 years old, or weighing less than 90 Kg, and eliminate the data from those whose numbers are just too extreme, we can get the numbers to work out better. Then we need more controls to match these new groups we've created." Kiddies, it doesn't work that way.</p><p></p><p>Such people (the raving loonies and also the fringe researchers) can also whip up public opinion in their favour by using their charisma and paranoia to fuel some fairly strenuous public opinion. I've been attacked by people who felt I was being hypercritical of their 'pet' researchers. All I was doing was trying to ensure proper peer review, proper processes in place in order for that research to be given legitimacy. But that particular research fell at the second post because they made the primary error of any scientist - they fell in love with their own theories and therefore would not allow comparisons or criticisms.</p><p></p><p>Anywhere in the world, you should not have to pay to be part of a research study. In a lot of cases, you get paid. Or at least reimbursed expenses. Anyone who says that what they are doing is experimental, but who asks you to pay for it - run, don't walk, away. However, if you get the chancce to find out something that could help, give it serious consideration. You never know - this could be it! Just check it out thoroughly to make sure it will be safe, especially if you are making decisions on behalf of your child. In our case, I make sure that difficult child 3 is fully informed and has the final decision.</p><p></p><p>Katlin, the treatment your daughter was put on sounds like it did wonderful things. I have no doubt that such treatments can work, for the right person. But they won't fix everything necessarily - as you yourself pointed out, a lot of damage had been done purely because she had reached that age with no help available, and there was the fallout from that; and also such treatments won't help every person - witness the food sensitivity study we were in, where we turned out to be in the majority who could not be helped by diet change. And even if we had been helped - difficult child 3 would still be autistic. It just would have made it easier to help him, that is all.</p><p></p><p>We each do what we can. We love to read success stories but it is very important to make it clear (as I feel you did) that if anyone does not follow your path, it is our choice.</p><p>I mention this because ths fringe loonies I mentioned above train their patients to use emotional blackmail on others, to boost more clients to their clinics. I wish I had a dollar for every time I was told, "Why are you so critical of Dr X? Don't you WANT to be well?"</p><p></p><p>Unfortunately too many of us parents have also heard this with regards to our children and as a result, hackles are hypersensitive!</p><p></p><p>I'm glad your daughter did so much better with the supplements. Have you had the children tested too? Or done your own quiet tests? And what about yourself? Such problems can be familial but not necessarily be expressed through the same symptoms. And also as I said - sometimes your approach needs to be multidisciplinary, and sometimes we have to accept that we've 'fixed' all we can, and have to weather the rest.</p><p></p><p>Marg</p></blockquote><p></p>
[QUOTE="Marguerite, post: 291225, member: 1991"] Katlin, you have started a very interesting discussion that does come round every so often. Here is an Aussie perspective - different, because here our health system is highly subsidised. However, we also do have private clinics which do charge an arm and a leg for sometimes questionable treatments. They are often one step ahead (if that) of our regulatory bodies. However, we also have approved public hospital clinics where accredited, peer-reviewed research on exactly this topic is going on. I've had experience with both, I've attended seminars with both, I've published articles by writers from both camps. And I tell you - the more the officialdom brakes are off, the more outrageous become some of the claims. Not only the diagnostic claims, but also some of the treatment claims. I won't list them here, some of them are just too gross. One specialist I had "sold" to me was in my opinion a raving loony. He was an idealist and may have been on to something for some people, however. He just tried to apply it to everybody, he would do every test possible on every person who walked through the door and finally our health care system said to him (as they say to many doctors) - "If you can't justify those tests you have ordered retrospectively, you will have to pay us back for all the tests you have ordered for the past two years." This unfortunately scares off some good but more balanced doctors from doing tests that ARE needed. Cost is the issue for us in the Aussie health care system. The national Medicare budget is blowing out. But there is still scope within the public hospital system (which while technically not "free" is bulk-billed and therefore paid for out of the Medicare levy in our taxes). Doctors and specialists who work in the public health system are employed on salary. They not only see patients, they do research through their clinics. The research HAS to be arranged through strict Ethics Committee channels as well as other scientific rules needing to be followed. Research has to be double-blinded, but before the double-blinded trials, we get the pilot study. That is when a doctor can say, "I think your child could be lacking certain minerals or vitamins, I want to find out and see if we can help." The pilot study also has to be approved and meet strict scientific controls, but there are good reasons for this - once they have demonstrated that their ideas are right (and this MUST be done scientifically) then they publish the results (brownie points for the specialist, not money) and then other specialists around the world can share in this knowledge. The raving loony I mentioned - he would customise treatment for his patients according to each person's individual measured deficits, then he would manage each case individually. He was never able to publish because he never wrote a decent research protocol that reputable journals would touch. It had nothing to do with drug companies - we have companies here who market herbal remedies who have done double-blinded studies - I actually took part in one but had to drop out because I developed a reaction to the treatment. I have other (conventional) specialists who openly recommend herbal treatments to a lot of their patients (for example, the urologist who tells his patients to take cranberry capsules). Now to this particular hospital clinic - it is in Sydney, it is overseen by an pediatric immunologist in conjunction with a dietician. There is another immunologist on board who actually has a reputation of shutting down the raving loonies. And Katlin, I'm not saying your daughter was treated by the raving loony sect - not at all. Only that because the raving loonies are out there, it makes it very difficult for the genuine helpers to really give the help they can without being attacked. Now this Sydney clinic were doing a research study into Pervasive Developmental Disorder (PDD) and the effect of modifying diet. difficult child 3 got referred there by our GP (standard approach) after I had heard about this mob through our local autism network. The procedure - we had to attend the clinic with the reports proving the diagnosis. Then we met with the pediatric immunologist there so she could comfirm the diagnosis for herself. After that we were handed over to the dieticians who went through the issues in detail with us. We were told that they had already demonstraed statistically that in about 30% of Pervasive Developmental Disorder (PDD) cases, changing diet (and in some cases replacing with supplements) brought about an improvement in behaviour. The procedure was onerous and it is difficult to explain here - I've tried a few times but it is just too complex. When I say "diet" or even "elimination diet" or "food sensitivity" people think I'm saying that if you put your child on a healthy, all-natural diet that will be all that it takes. It's not. it's far more than that and frankly, at times the child will not be eating a balanced diet at all, certainly not one that you would accept as healthy. But for this process, it is a necessary step in order to assess exactly which chemicals, including NATURAL ones, are possibly causing problems for your child. And only 30% could be helped - I found that interesting. But worth chasing after, especially as all it cost us was the petrol to drive there. They even gave us vouchers to pay for the parking station. The procedure was to be - ensure we had eliminated all possible problem chemicals (a long and detailed list) and then slowly reintroduce them. We had to monitor the behaviour with a detailed diary as well as list absolutely everything he ate, in detail. It took several months. After that, the double-blinded part of the study came in. We were given a box of capsules and when difficult child 3 was stable, we were to try each capsule in strict number order. The staff didn't know what was in each capsule and neither did we. Only the computer knew and the code was not to be broken until after we had completed the study. All we knew was that the full range of problem chemicals as well as placebos were in that range of capsules. At this point we parted company (on friendly terms) with the research - we were finding that even on the most restrictive diets, the problem behaviours (which at first had seemed to be responding) were in fact environmental in trigger - the nasty variable in our case was stress, especially stress from school attendance. It was a variable we were to take another six months to deal with. In other words - we were in te 70% of cases for whom this did not work. I have mentioned the name of this research team in the past but I am not doing so here. Anyone who wants to PM me so that can track their publications - feel free. Their research into diet is ongoing. They're not always working with autism. Currently the autism research we're following is through another research team who are trialling oxytocin to see if it helps with social skills and also possibly learning. We still haven't been told which of the two one-off nasal sprays difficult child 3 had, was the placebo and which was the oxytocin. But he has his suspicions, he felt he definitely performed a lot better with one than with another. On Friday we go back for the next phase of the trial - the month-long home-administered supply of oxytocin. Again, we will be given two supplies one after the other - one will be oxytocin, the other will be placebo (normal saline). We have to keep strict records of our observations and there are interviews to attend also. Research is how this sort of thing should be developed. The raving loony doctors do the "lick it and see methods" but then, so do researchers, intially. But from there it differs. ANY researcher can make an observation and say, "My, this is interesting!" but what turns it into research from there is the well-written proposal, the "Let's find out abouth this properly and remove as many variables as possible, we have to go slowly and carefully but it will be worth it because we will then be able to help a lot more people in the long run." Meanwhile the raving loonies say, "Wow, this is interesting! I really want to help people NOW, I'll just make a stab at it and over time we'll continue to perfect this for each individual. Of course we can't take the time to research it more meticulously, people have to be helped now!" I The problem with this approach is, you're never certain if people really ARE being helped by your treatment, or by your besdide manner, or by something else entirely random. Such doctors often don't have measures for success that make sense to others - I've known raving loonies who judge success by the number of people who don't return for further treatment. "They didn't come back, so I must have cured them." There are also those doctors in between, who discover something thet think will make them either rich, or saviours of mankind, preferably both. They jealously guard their knowledge and while they may do what passes for legitimate research, their increasing paranoia over not wanting to share their knowledge also often means they lack the independent peer review that such work needs, to be given legitimacy. And by lacking that peer review they can make some really stupid mistakes. 've seen these people presenting their findings at conference and they can't see what is wrong with rearranging their subjects AFTER the work is done, in order to keep fiddling the data until they can get statistically significant results. "Hmm, the results weren't significant enough. Maybe if we only look at data from those people under 40 years old, or weighing less than 90 Kg, and eliminate the data from those whose numbers are just too extreme, we can get the numbers to work out better. Then we need more controls to match these new groups we've created." Kiddies, it doesn't work that way. Such people (the raving loonies and also the fringe researchers) can also whip up public opinion in their favour by using their charisma and paranoia to fuel some fairly strenuous public opinion. I've been attacked by people who felt I was being hypercritical of their 'pet' researchers. All I was doing was trying to ensure proper peer review, proper processes in place in order for that research to be given legitimacy. But that particular research fell at the second post because they made the primary error of any scientist - they fell in love with their own theories and therefore would not allow comparisons or criticisms. Anywhere in the world, you should not have to pay to be part of a research study. In a lot of cases, you get paid. Or at least reimbursed expenses. Anyone who says that what they are doing is experimental, but who asks you to pay for it - run, don't walk, away. However, if you get the chancce to find out something that could help, give it serious consideration. You never know - this could be it! Just check it out thoroughly to make sure it will be safe, especially if you are making decisions on behalf of your child. In our case, I make sure that difficult child 3 is fully informed and has the final decision. Katlin, the treatment your daughter was put on sounds like it did wonderful things. I have no doubt that such treatments can work, for the right person. But they won't fix everything necessarily - as you yourself pointed out, a lot of damage had been done purely because she had reached that age with no help available, and there was the fallout from that; and also such treatments won't help every person - witness the food sensitivity study we were in, where we turned out to be in the majority who could not be helped by diet change. And even if we had been helped - difficult child 3 would still be autistic. It just would have made it easier to help him, that is all. We each do what we can. We love to read success stories but it is very important to make it clear (as I feel you did) that if anyone does not follow your path, it is our choice. I mention this because ths fringe loonies I mentioned above train their patients to use emotional blackmail on others, to boost more clients to their clinics. I wish I had a dollar for every time I was told, "Why are you so critical of Dr X? Don't you WANT to be well?" Unfortunately too many of us parents have also heard this with regards to our children and as a result, hackles are hypersensitive! I'm glad your daughter did so much better with the supplements. Have you had the children tested too? Or done your own quiet tests? And what about yourself? Such problems can be familial but not necessarily be expressed through the same symptoms. And also as I said - sometimes your approach needs to be multidisciplinary, and sometimes we have to accept that we've 'fixed' all we can, and have to weather the rest. Marg [/QUOTE]
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