aidansmom Posted January 31, 2012 Report Share Posted January 31, 2012 I can't find a video link yet, but did anybody catch Dr. Drew's show again last night (1/30/2012)? He had yet another PANDAS naysayer on who backed the ludicrous "conversion disorder" business again, saying that the girls' symptoms are "consistent" with "conversion disorder." Something like Witznitser? Then Dr. Drew threw up a list of primary symptoms for "conversion disorder" onto the screen, and the only one that any of these girls actually meet is the involuntary convulsions/tics! Dr. W. also espoused during his description of it. Dr. Drew made the point that none of these girls or their families, however, can identify a traumatic event preceding the onset of their illness, at which point the esteemed Dr. W. back-pedaled and said, well, it didn't have to be a "major" traumatic event! "Conversion disorder" aka Mass Hysteria?!?! How long are these self-impressed morons going to persist with this unsupportable load of you-know-what?! It's enough to bring on a case of the "vapors" and "the consumption"! Egad! It was Dr. Max Wiznitzer and believe it or not when we first moved to where we are now I took Aidan to see him for nueorology so I about fell out of my chair. when I saw him on this story. I will post more later when I have more time(but I am so glad my gut said to move on from him.) Link to comment Share on other sites More sharing options...
MomWithOCDSon Posted January 31, 2012 Report Share Posted January 31, 2012 It was Dr. Max Wiznitzer and believe it or not when we first moved to where we are now I took Aidan to see him for nueorology so I about fell out of my chair. when I saw him on this story. I will post more later when I have more time(but I am so glad my gut said to move on from him.) Wiznitzer! That's it! Now I know what to name my latest voodoo doll! Link to comment Share on other sites More sharing options...
MomWithOCDSon Posted January 31, 2012 Report Share Posted January 31, 2012 Well, it appears that CNN (which owns Dr. Drew's HLN network) has used Witnitzer's services before . . . when it corroborated the public lynching of Dr. Andrew Wakefield. Wakefield - Witznitzer Commentary A "cynic gun for hire" with a degree hanging on his wall. Link to comment Share on other sites More sharing options...
boychildsmom Posted January 31, 2012 Report Share Posted January 31, 2012 More on Witnitzer... http://www.nbc33tv.com/news/national-news/strep-infection-can-trigger-ocd-in-extremely-rare-cases http://origin.wkyc.com/news/article/212531/7/Possible-but-rare-to-catch-mental-disorder Link to comment Share on other sites More sharing options...
oivay Posted February 1, 2012 Report Share Posted February 1, 2012 (edited) We also had the same experience with Tegretol. She slept all day, put on 10+ pounds, and just looked like death warmed over. I will say though that it reduced some of the movement, although she then fell down the stairs and sprained her wrist. Check this out....yet another link: http://www.13wham.com/news/local/story/LeRoy-tic-like-symptoms-dr-trifiletti-leroy-h-s/fTu_JTc1ZEKg5xy1SnZVVA.cspx?autoplay=1 "The previous doctor who diagnosed the girls with conversion disorder said in the Buffalo News Dr. Trifiletti is a zealot with no evidence backing his claims." I'm assuming this is Dr. Conversion Disorder or his minion. Edited February 1, 2012 by oivay Link to comment Share on other sites More sharing options...
oivay Posted February 1, 2012 Report Share Posted February 1, 2012 And there's more......... http://www.buffalonews.com/city/communities/batavia-genesee-county/article716955.ece The defense There was a time when the Dent physicians were not so vocal. Mechtler and McVige initially were reluctant to state or defend their diagnosis, worried that public attention would exacerbate symptoms. But after the media frenzy began and some families refused to return for treatment, Mechtler changed his mind. "I have to defend my patients by offering sanity," Mechtler said. He also wanted to defend pediatric neurologist McVige, a relatively young, new physician to the Dent practice who has spent "countless emotional hours" treating and counseling the Le Roy patients. "It's difficult to see a young physician get this much exposure and criticism -- especially when she's right," he said. "She's really upset that her patients aren't coming back, that they're being railroaded." He added that parent Jim DuPont has been personally invited to come to the Dent offices with his daughter but has refused. Thera Sanchez and her mother have made and canceled three appointments with Dent. I can't imagine why these parents wouldn't want to bring their children in for a complimentary conversion disorder diagnosis. And how in the world are they (Dr. Conversion Disorder et al.) so freely disseminating this information to news sources? Link to comment Share on other sites More sharing options...
kimballot Posted February 1, 2012 Report Share Posted February 1, 2012 And there's more......... http://www.buffalonews.com/city/communities/batavia-genesee-county/article716955.ece The defense There was a time when the Dent physicians were not so vocal. Mechtler and McVige initially were reluctant to state or defend their diagnosis, worried that public attention would exacerbate symptoms. But after the media frenzy began and some families refused to return for treatment, Mechtler changed his mind. "I have to defend my patients by offering sanity," Mechtler said. He also wanted to defend pediatric neurologist McVige, a relatively young, new physician to the Dent practice who has spent "countless emotional hours" treating and counseling the Le Roy patients. "It's difficult to see a young physician get this much exposure and criticism -- especially when she's right," he said. "She's really upset that her patients aren't coming back, that they're being railroaded." He added that parent Jim DuPont has been personally invited to come to the Dent offices with his daughter but has refused. Thera Sanchez and her mother have made and canceled three appointments with Dent. I can't imagine why these parents wouldn't want to bring their children in for a complimentary conversion disorder diagnosis. And how in the world are they (Dr. Conversion Disorder et al.) so freely disseminating this information to news sources? How is it NOT breaking HIPAA to reveal that someone has made and broken appointments or that they have not accompanied their daughter to an appointment?? I mean.. really.. Isn't that slander? These people are the patients - they are supposed to be protected... they are NOT the professionals who are getting paid. Link to comment Share on other sites More sharing options...
oivay Posted February 1, 2012 Report Share Posted February 1, 2012 (edited) "It's difficult to see a young physician get this much exposure........" Imagine how difficult it is to see your child's life completely altered and then have to deal with incompetent neurologists because they're the only game in town.............. Been there, done that.......... I swear, if this had happened to the Dent doctors own kids, there is absolutely no way they would be drinking the conversion disorder kool-aid. Edited February 1, 2012 by oivay Link to comment Share on other sites More sharing options...
EAMom Posted February 1, 2012 Report Share Posted February 1, 2012 "The previous doctor who diagnosed the girls with conversion disorder said in the Buffalo News Dr. Trifiletti is a zealot with no evidence backing his claims." I'm assuming this is Dr. Conversion Disorder or his minion. I like that name, "Dr. Conversion Disorder and his minion" ....that is what I assumed as well. Link to comment Share on other sites More sharing options...
EAMom Posted February 1, 2012 Report Share Posted February 1, 2012 "It's difficult to see a young physician get this much exposure........" Imagine how difficult it is to see your child's life completely altered and then have to deal with incompetent neurologists because they're the only game in town.............. Been there, done that.......... I swear, if this had happened to the Dent doctors own kids, there is absolutely no way they would be drinking the conversion disorder kool-aid. Yup, no sympathy here for Dr. Minion. These girls have suffered twice over (just like many PANDAS kids/parents)... once b/c of this horrible disease, and then again b/c of inappropriate symptomatic treatment thanks to a misdiagnosis. I'm so tired of docs who are b/c uninformed and yet too arrogant to really read anything on PANDAS beyond skimming a Kurlan/Singer article abstract and the NIMH's website. And unlike most other PANDAS kids, they've also suffered a triple whammy, the national coverage/public ridicule b/c the local docs haven't done their homework. BTW, I wonder how many other PANDAS cases Dent has misdiagnosed over the years. Link to comment Share on other sites More sharing options...
oivay Posted February 1, 2012 Report Share Posted February 1, 2012 "I have to defend my patients by offering sanity," Mechtler said. Is he actually implying that his patients, or the patients he didn't/doesn't treat are insane? If he can actually restore sanity, he really should get some sort of prize........... Link to comment Share on other sites More sharing options...
smartyjones Posted February 1, 2012 Report Share Posted February 1, 2012 that sanity comment is ridiculous. and what's this about conversion disorder is very common -- i see it 2-3 times a week. that's just an admission of ineptness -- i just don't know what to do or what it is so i just throw it in this pile --- 2 to 3 times a week!!!. THIS is our medical science and our experts????!!!!! shiela -- thank God you developed this website to help us and thank Diana, Buster, Vicki, Susan and everyone else!!!!!!! Link to comment Share on other sites More sharing options...
colleenrn Posted February 1, 2012 Report Share Posted February 1, 2012 (edited) I am almost certain that Dr. Mechler, each time he speaks about these girls to the media, is violating HIPAA. Each and every time. Wonder how many violations he has made in the past few weeks. You cannot tell the media, or anyone for that matter, these personal details, including how many times they had made or canceled appointments. Not only is he standing by his very bogus diagnosis, he is violating these families privacy rights repeatedly. Why is no one calling him out on this? Apparently anyone at all can report these violations. The link is below. I wonder if any of these families are reading on this forum because they have a legal right to protection and a legal right to report violations. This is wrong. This is negligent on this doctor's part. The Privacy Rules require physicians to use appropriate administrative, technical, and security safeguards to protect the privacy of protected health information — including oral communications. This means that physicians must use reasonable efforts to have protections in place, but they do not need to make expensive structural changes to "soundproof" their offices. http://www.hhs.gov/ocr/privacy/hipaa/complaints/hipcomplaintform.pdf Dr. Mechler said in the Jan. 29 Buffalo Times article: http://www.buffalonews.com/city/communities/batavia-genesee-county/article716955.ece "People do not want to accept that," said Dr. Lazlo Mechtler, one of two neurologists at Dent Neurologic Institute who have evaluated 12 of the 15 cases that have come to light so far. "They live a conspiracy life in a bioterrorist world." It is unbelievable that he would make that ridicuolus statement to suffering families. Then he goes on to say: "Conversion disorder is very common," Mechtler said. "Neurologists see it regularly. I probably see it every two or three days." I worked as an RN in a psychiatric hospital for years and guess what? We never, even one time, had any patient diagnosed with conversion disorder. IMO, Dr Mechler is regularly misdiagnosing some of his patients. I hope that all of his current patients get a second opinion from a physician not in anyway connected to DENT. Colleen Edited February 1, 2012 by colleenrn Link to comment Share on other sites More sharing options...
JAG10 Posted February 1, 2012 Report Share Posted February 1, 2012 "The previous doctor who diagnosed the girls with conversion disorder said in the Buffalo News Dr. Trifiletti is a zealot with no evidence backing his claims." I'm assuming this is Dr. Conversion Disorder or his minion. I like that name, "Dr. Conversion Disorder and his minion" ....that is what I assumed as well. I don't think Dr. T is claiming that these girls have PANS/pandas yet. He is stating that it is a plausible diagnosis based on what he knows thus far and worthy of investigation. He is willing to look at all the possibilities. He has respectfully stated that there are possibilities (from his point of view infectious-based) that have not been excluded BECAUSE THE PREVIOUS PHYSICIANS NEVER LOOKED either due to ignorance or arrogance. These physicians are entitled to present the pros and remaining questions regarding PANS but to call Dr. T fanatical is unprofessional, mean-spirited and low class behavior unbecoming of their profession. That said.....if it turns out that the Le Roy students do not have PANS (but something else besides Conversion Disorder), I certainly hope this is not used as a sword against the legitimacy of PANS. Dr. T is not saying they have it without some lab results to back him up or without firm evidence of the patients' immunological profiles. Link to comment Share on other sites More sharing options...
dcmom Posted February 1, 2012 Report Share Posted February 1, 2012 colleen- I completely agree. This is ridiculous. I always lose respect for a doctor that will go on tv and speculate about some tv star's "issues" (ahem, Dr Drew). But this goes BEYOND- how can a doctor be allowed to go on national tv, or written news, and discuss his patient's diagnosis? Why is no one interested in this? Why would these parents want to see this doctor? For a non diagnosis, and for him to then discuss this on Tv. The difficult thing is, this is going to be very hard to resolve. If this is pandas- it is very likely nothing will turn up in these tests. We all know it is hard to "prove" pandas through testing. It is possible they have pandas, due to an illness that is past. My girls had positive strep cultures at onset- had we missed that, we would be in a much rougher spot- even with positive cultures neither of my kids make titers. Probably the only way to start to "prove" pandas in that case would be treatment, maybe with steroids and antibiotics- but that will be hard to do under a microscope. I do think if it is pandas, it would be easy for one of us, or Dr T to know (like Dr Drew says his gut tells him it is not conversion)- because there will be other symptoms. If this were to be pandas, not ALL of these kids would have tics only. There would be some of the other symptoms. I think that is probably what Dr T meant when he said he is using the PANS criteria. I have seen some paperwork from that meeting that has categories and lists of common pandas symptoms. (I am not saying it is not possible to have tics only, just saying unlikely that 12 plus pandas kids would all have tics only). If it is neuro- toxicity due to the environmental mess they have up there- well, I don't think there is a test for that either. Anyone with common sense can see cause and effect, but proving it is another story. Erin Brocavitch will have her hands full. I wonder about her being able to link these symptoms with the environment decisively within the time frame of the media's attention span. What a mess. BTW- I had an aquaintance/ friend have her daughter (11 yrs old) diagnosed with conversion this summer. She had headaches, seizures, some tic like movements, anxiety, and school refusal. They did lots of medical testing and came up empty. (Pandas was not properly ruled out). I don't know what they did in the end- meds? therapy? etc? I don't know how she is doing, but she is back to school. I think this diagnosis is probably given very frequently Link to comment Share on other sites More sharing options...
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