Guest guest Posted August 4, 2002 Report Share Posted August 4, 2002 Isnt there some sort of minor mal-practice law regarding false diagnosis? An attorney mentioned that to me recently. Michele IMO, as much as Dr. Filapek's mercury statements get my goat and need be corrected (in her mind, on ABC url), I'm not sure that her possible misdiagosis of a child as " classic genetic Kanner's autism " merits legal action. She and many other med-school autism-diagnosticians have been cajoled into believing the " must be genetic " model, just as thousands of earlier diagnosticians were enthralled with the " refrigerator mother " model. An important option for the parent whose child was dxed as " classic genetic Kanner's autism " is to write Filipek and ask for clarification. What lab test(s) demonstrated a specific, known genetic mutation in that child? Furthermore, if that child's family (a) has lab-test data showing high levels of toxic-metal excretion, and ( has some documentations (eg, from teachers, physicians, others outside the family) that the child improved in major ways during chelation (as the metals were being excreted), then Dr. Filipek could be asked to consider re-diagnosis, something like: autistic-traits due to metal toxicity. However, a potential risk is that some highly placed physicians initiate legal action against physicians who act outside officially approved doctrine, thus the biggest issue for some people in Dr. Filipek's position will be: no doctor should order those tests. Paradigm shifts often generate ruffled feathers. Nonetheless, a friendly approach to her -- backed up by lab-data and by observers' testimony -- might help her outgrow her over-reliance upon " must be genetic " . If her statements to ABC were accurately quoted on the webpage, and if she was not deliberately and knowingly distributing false information, then I am inclined to presume -- as another parent or several has noted -- that Dr. Filipek's sincerely cares about autistic children and their families. Of course, sincerity was a trait common to many diagnosticians and therapists who admonished refrigerator mothers. Perhaps, even *perhaps*, her sincerity will help her come to know the mercury literature more thoroughly. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2002 Report Share Posted August 4, 2002 , You put it very eloquently, and I agree with you except that some Doctors have a tendency to be very arrogant when they think a parent is trying to teach them something they should know. Human nature is such that sometimes it is hard to say " I am sorry " , or " I was wrong " . The " genetic model " , is even *worse* than the " refridgerator mother " model because there is much more evidence that autism is not simply caused by genetic factors. , the root of this whole problem is this: The Allopathic approach to healing which advocates a Drug for almost every disease needs to be abandoned. I am not anti-medicine, but I have seen the misery this brand of medicine has caused on the human Race. I see at least 3 new autistic kids every day, in my audiology practice, and it is sad to see that Doctors who you really want to respect, burying their heads in the sand and denying that vaccinations have anything to do with the situation, because the professional Journals they read say so. All other information outside of that is considered " rubbish " and " unscientific " . (How sad). We are watching the " genocide " of largely the *male* population of the next genaration right before our eyes, and we need some mid-wives like Shiphrah and Puah, as was the case in the Book of Exodus. It is so sad to see intelligent professionals denying and (possibly) distorting facts. R Re: [ ] classic genetic Kanner's autism & malpractice Isnt there some sort of minor mal-practice law regarding false diagnosis? An attorney mentioned that to me recently. Michele IMO, as much as Dr. Filapek's mercury statements get my goat and need be corrected (in her mind, on ABC url), I'm not sure that her possible misdiagosis of a child as " classic genetic Kanner's autism " merits legal action. She and many other med-school autism-diagnosticians have been cajoled into believing the " must be genetic " model, just as thousands of earlier diagnosticians were enthralled with the " refrigerator mother " model. An important option for the parent whose child was dxed as " classic genetic Kanner's autism " is to write Filipek and ask for clarification. What lab test(s) demonstrated a specific, known genetic mutation in that child? Furthermore, if that child's family (a) has lab-test data showing high levels of toxic-metal excretion, and ( has some documentations (eg, from teachers, physicians, others outside the family) that the child improved in major ways during chelation (as the metals were being excreted), then Dr. Filipek could be asked to consider re-diagnosis, something like: autistic-traits due to metal toxicity. However, a potential risk is that some highly placed physicians initiate legal action against physicians who act outside officially approved doctrine, thus the biggest issue for some people in Dr. Filipek's position will be: no doctor should order those tests. Paradigm shifts often generate ruffled feathers. Nonetheless, a friendly approach to her -- backed up by lab-data and by observers' testimony -- might help her outgrow her over-reliance upon " must be genetic " . If her statements to ABC were accurately quoted on the webpage, and if she was not deliberately and knowingly distributing false information, then I am inclined to presume -- as another parent or several has noted -- that Dr. Filipek's sincerely cares about autistic children and their families. Of course, sincerity was a trait common to many diagnosticians and therapists who admonished refrigerator mothers. Perhaps, even *perhaps*, her sincerity will help her come to know the mercury literature more thoroughly. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2002 Report Share Posted August 4, 2002 > Isnt there some sort of minor mal-practice law regarding false diagnosis? An > attorney mentioned that to me recently. > Michele > > IMO, as much as Dr. Filapek's mercury statements get my goat and need be > corrected (in her mind, on ABC url), I'm not sure that her possible misdiagosis > of a child as " classic genetic Kanner's autism " merits legal action. The dx is accurate based on the definition of " classic genetic Kanner's autism " . My son is not a regressive case, and he was very severely autistic, so he did meet the clinical definition. > An important option for the parent whose child was dxed as " classic genetic > Kanner's autism " is to write Filipek and ask for clarification. What lab test(s) > demonstrated a specific, known genetic mutation in that child? So far as I know, it was observation plus the fact that he did not regress. > > Furthermore, if that child's family (a) has lab-test data showing high levels of > toxic-metal excretion, and ( has some documentations (eg, from teachers, > physicians, others outside the family) I have no documentation, either medical or otherwise. Sometimes I wish I did, but then he no longer qualifies as autistic, so most days I am glad I don't have so much documentation. It will be difficult enough to have the label removed with the documentation I DO have. >>Nonetheless, a friendly approach to her -- backed up by lab-data and > by observers' testimony -- might help her outgrow her over-reliance upon " must > be genetic " . Unfortunately, I don't have this. And I don't know that I could pull off a " friendly " approach, my social skills are not necessarily my strong point LOL Dana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2002 Report Share Posted August 5, 2002 > A. Does the DSM-IV mention " classic genetic Kanner's autism " ? > B. If not, what book uses that as an official or semi-official diagnostic > classification? I don't know where is the exact description. I know that when I was in the office with Filipek, she kept asking me when my son regressed, when he lost skills, what were the specific skills he had that he lost, etc. I kept telling her he never had skills, I thought she was not listening to me LOL. Finally I asked why she kept asking, and she indicated that most autistic kids lost skills. So after about 10 minutes of the same type of question, I asked her did this mean he was not autistic, because Lott had given him the dx of autism about 5 months prior. She said no, actually it made it easier for her, because he more than met the criteria for autism, he was very low functioning, and because he was " born this way " and did not lose skills, it meant he qualified as " classic genetic Kanner's autism " [i remember her exact words], which was the original type of autism studied by Kanner. She gave me a brief description of that, then told me to enroll him in the public schools because " they will know what services he needs " . Dana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2002 Report Share Posted August 5, 2002 What a bunch of crock! All it means is that your child was probably exposed to the mercury earlier (maybe in utero) or got more early on (maybe the 6th dose in an unshaken 6-dose vial or maybe amalgam poisoning from the mother). Barb [ ] Re: classic genetic Kanner's autism & malpractice > > >> A. Does the DSM-IV mention " classic genetic Kanner's autism " ? >> B. If not, what book uses that as an official or semi-official >diagnostic >> classification? > > >I don't know where is the exact description. I know that when I was >in the office with Filipek, she kept asking me when my son regressed, >when he lost skills, what were the specific skills he had that he >lost, etc. I kept telling her he never had skills, I thought she was >not listening to me LOL. > >Finally I asked why she kept asking, and she indicated that most >autistic kids lost skills. So after about 10 minutes of the same type >of question, I asked her did this mean he was not autistic, because >Lott had given him the dx of autism about 5 months prior. She said >no, actually it made it easier for her, because he more than met the >criteria for autism, he was very low functioning, and because he was > " born this way " and did not lose skills, it meant he qualified as > " classic genetic Kanner's autism " [i remember her exact words], which >was the original type of autism studied by Kanner. She gave me a >brief description of that, then told me to enroll him in the public >schools because " they will know what services he needs " . > >Dana > > > > >======================================================= > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2002 Report Share Posted August 6, 2002 Barb's point is important and helps clarify what happens when a model (eg, if early onset, must be genetic) is too thoroughly accepted. In additional to early eHg exposure (eg, via RhoGam), other possibilities include a period of placental insufficiency, an incident of abruptio placentae, as well as a reactivated CMV-infection (eg, reactivated mildly due to the mother's naturally diminished immunity, which occurs during pregnancy so that the mother does not develop strong immune reactions against paternal antigens arising from the paternal chromosomes in the embryo and fetus). In other words, for a physician to conclude " must be genetic " is for the physician to utter a shibolleth-like belief rooted in the NIH imposed model (imposed and grant-application guidelines and then by funding), " must be genetic " . A question remains for Filipek: Since the child's autism was early onset, how did Filipek *know* with certainty or why did she rush to the presumption that that child's autism was " genetic " ? Apparently, there was no confirming lab-test for a known genetic autism. What's frustrating is that an early onset autism can prompt evaluation of conditions within the mother, father, and child (eg, HSV sores too often, shingles too often; CMV viral load in PBMCs, exposure to eHg and other toxic metals). In some cases, an underlying pathology etiologically significant to the child's autistic traits can be identified and, in some cases, treated. Very frustrating is the fact that when " it's genetic " is uttered so matter of factly (in the absence of specific-gene, lab-test verification), then the possibility of finding an underlying pathology that is treatable is precluded a priori. " romkemas " <jromkema@...> Subject: Re: Re: classic genetic Kanner's autism & malpractice What a bunch of crock! All it means is that your child was probably exposed to the mercury earlier (maybe in utero) or got more early on (maybe the 6th dose in an unshaken 6-dose vial or maybe amalgam poisoning from the mother). Barb Romkema <jromkema@...> [ ] Re: classic genetic Kanner's autism & malpractice > > >> A. Does the DSM-IV mention " classic genetic Kanner's autism " ? >> B. If not, what book uses that as an official or semi-official >diagnostic >> classification? > > >I don't know where is the exact description. I know that when I was >in the office with Filipek, she kept asking me when my son regressed, >when he lost skills, what were the specific skills he had that he >lost, etc. I kept telling her he never had skills, I thought she was >not listening to me LOL. > >Finally I asked why she kept asking, and she indicated that most >autistic kids lost skills. So after about 10 minutes of the same type >of question, I asked her did this mean he was not autistic, because >Lott had given him the dx of autism about 5 months prior. She said >no, actually it made it easier for her, because he more than met the >criteria for autism, he was very low functioning, and because he was > " born this way " and did not lose skills, it meant he qualified as > " classic genetic Kanner's autism " [i remember her exact words], which >was the original type of autism studied by Kanner. She gave me a >brief description of that, then told me to enroll him in the public >schools because " they will know what services he needs " . > >Dana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2002 Report Share Posted August 6, 2002 >My current problem, is that my kids are now starting to " gang up on me " , scheming together to do things they know they are not allowed to do, or holding me down and tickling me. And this is supposed to be a good sign????????????????? LOL =) Dana Ganging up on you? I would say it sounds like a good sign --- wait till they are teens!!!! Then you will really feel out numbered!!!! Michele Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2002 Report Share Posted August 6, 2002 , not to pick nits here, but I think the problem is a cognitive one not a testing one. Even if Filipek (or anyone) had tested DNA/genetics and found a " genetic problem " this would NOT prove that this genetic problem is THE cause. One would have to also eliminate all other causes or show a truly conclusive, overriding, direct connection. I don't think that is possible with autism, as I think there are multiple factors involved. But, since researchers are focused on finding a genetic cause, they probably " will " . The issue seems to me to be people's thinking and logic. Just my opinion. I certainly agree that " it is genetic " is a fast way to stop personal hope and progress.....and therefore very uncompassionate. best wishes, Moria > Barb's point is important and helps clarify what happens when a model (eg, if > early onset, must be genetic) is too thoroughly accepted. In additional to early > eHg exposure (eg, via RhoGam), other possibilities include a period of placental > insufficiency, an incident of abruptio placentae, as well as a reactivated > CMV-infection (eg, reactivated mildly due to the mother's naturally diminished > immunity, which occurs during pregnancy so that the mother does not develop > strong immune reactions against paternal antigens arising from the paternal > chromosomes in the embryo and fetus). In other words, for a physician to > conclude " must be genetic " is for the physician to utter a shibolleth-like > belief rooted in the NIH imposed model (imposed and grant-application guidelines > and then by funding), " must be genetic " . > > A question remains for Filipek: Since the child's autism was early onset, how > did Filipek *know* with certainty or why did she rush to the presumption that > that child's autism was " genetic " ? Apparently, there was no confirming lab-test > for a known genetic autism. What's frustrating is that an early onset autism can > prompt evaluation of conditions within the mother, father, and child (eg, HSV > sores too often, shingles too often; CMV viral load in PBMCs, exposure to eHg > and other toxic metals). In some cases, an underlying pathology etiologically > significant to the child's autistic traits can be identified and, in some cases, > treated. > > Very frustrating is the fact that when " it's genetic " is uttered so matter of > factly (in the absence of specific-gene, lab-test verification), then the > possibility of finding an underlying pathology that is treatable is precluded a > priori. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2002 Report Share Posted August 6, 2002 > Barb's point is important and helps clarify what happens when a model (eg, if > early onset, must be genetic) is too thoroughly accepted. In additional to early > eHg exposure (eg, via RhoGam), I have dental fillings, and my son received HepB vax at two days old. > A question remains for Filipek: Since the child's autism was early onset, how > did Filipek *know* with certainty or why did she rush to the presumption that > that child's autism was " genetic " ? Apparently, there was no confirming lab-test > for a known genetic autism. No tests. She just " knew " because he has always been " different " . > Very frustrating is the fact that when " it's genetic " is uttered so matter of > factly (in the absence of specific-gene, lab-test verification), then the > possibility of finding an underlying pathology that is treatable is precluded a > priori. I had a discussion of this issue on another message forum recently. The proliferation of all these behavioral dx [autism, ADHD, OCD, ODD, Tourette, etc], when the underlying cause is not considered, just the behaviors. Discussion revolved around eliminating all behavioral dx, so doctors would not be so quick to apply the label, but might actually be forced to find any underlying issues before going to a purely behavioral dx. Might not be good for education settings, but might be nice for biomedical settings. Today is day 3 of round 35 for my kids. The last few rounds it has been OBVIOUS that metals are coming out of the brain. For my #4 child, NT but has food issues, she has one eye which is " lazy " , it wanders to the outside. I discovered this happens with nitrites/nitrates and also artificial colors/flavors. Well these last few rounds, about a half-hour after giving ALA, the eye is firmly looking off to the side. Then over the next few hours it gradually moves back forward, then moves off to the side again after the next dose. This concerned me enough to reduce her ALA dose about 2-3 rounds ago, altho the eye does return to forward-looking at the end of each round. For #2, he has been squinting his eyes a LOT, and visual stims are his favorite stim, anytime he wants/needs to stim, he will choose a visual one. This coincides with each dose also, and disappears again at the end of each round. Plus, his language and his ability to generalize concepts is much improved after the last few rounds. My current problem, is that my kids are now starting to " gang up on me " , scheming together to do things they know they are not allowed to do, or holding me down and tickling me. And this is supposed to be a good sign????????????????? LOL =) Dana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2002 Report Share Posted August 6, 2002 LOL I used to tell parents all the time " be careful what you wish for. " When my kids were little parents of newly dxed kids would call and say that their child didn't speak, with and squabbling in the background:) The other night, the two of them, my twenty year old baby brother(on leave from the Army) his room-mate and one of 's college friends were all here. and decided to play match maker between Andy's room-mate and 's friend. Well, the long and short of it is that it worked so well that the two of them left together and 's friend never went home that night. By this time, had left for vacation with friends, so I was in the dog house with the girl's mother, and my mother, because my brother was nearly late getting back from leave because they couldn't find his room-mate. thought it was funny, doesn't even know about it yet, and I'm not sure how or if the other kid made it back to the fort. Ah yes, the joys of parenting... Re: [ ] Re: classic genetic Kanner's autism & malpractice >My current problem, is that my kids are now starting to " gang up on me " , scheming together to do things they know they are not allowed to do, or holding me down and tickling me. And this is supposed to be a good sign????????????????? LOL =) Dana Ganging up on you? I would say it sounds like a good sign --- wait till they are teens!!!! Then you will really feel out numbered!!!! Michele Quote Link to comment Share on other sites More sharing options...
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