concerned lady Posted February 5, 2012 Report Posted February 5, 2012 Hi EAMom, Thank you so much for your link and transcript of the dad Jim DuPont, in Le Roy, telling what he learned, educating Dr. Drew! Dr. Drew appears to contradict himself a lot, and he seems scattered--and Dr. Drew also seems to lean too much towards "conversion disorder", without demanding a lot more testing of all kinds! It will be good to hear (soon) the results of Dr. Trifiletti's testing of many of the Le Roy kids. The school people and NYS Health Dep't seem to be hiding things, and I hear that the school is "lawyering up". What do they know, that they won't admit? Why are they stonewalling the Erin Brockovich team? Why is the health department ruling out everything, when they know almost nothing about things that parents on this forum know a lot about? It will be helpful to get test results from Erin Brockovich's team, too, regarding the toxic railroad derailment spill of 1970--biggest TCE spill in U.S. history, and 3 miles from the school! Some questions that need ACCURATE, truthful answers to, are: Were the natural gas wells right at the school, using fracking chemicals (neuro-toxins) or not? What infections did all the tic sufferers have, around the time of, and before the tics began? What were all vaccinations that each child had, or didn't have? What "batch" were they (vaccines), if administered by "the school"? (thinking of a bad batch, perhaps). What did the girls in Corinth and another nearby school district (Byron-Bergen) have in common with Le Roy, where all 3 areas had kids develop similar tic disorders? (PANS? Vaccinations? Environmental insults? The flooding from the hurricane? Fracking in natural gas wells? Other?) I think that the wonderful dad, Jim DuPont, is probably right, that there are multiple factors playing a role, causing this Le Roy outbreak of tic disorders. I think the psychiatrist from DENT (who gets paid by big pharma), who is pushing the diagnosis of "conversion disorder" in the Le Roy situation may be trying to create a convenient distraction, (SMOKESCREEN), a decoy, to consciously or unconsciously (if he's in "denial") try to prevent parents from finding people who can help them to look for and find the real causes of what's happening there to their chidren, and in other areas, too! Sincerely, Carol http://cantbreathesuspectvcd.com (My website is about a medical condition that was originally, incorrectly, called hysteria among females, so in this way, I can relate to the Le Roy parents and kids... )
EAMom Posted February 5, 2012 Report Posted February 5, 2012 Some questions that need ACCURATE, truthful answers to, are: What infections did all the tic sufferers have, around the time of, and before the tics began? Hi Carol, I'm just focusing on a bit of your post. This may be a huge problem. The girls' symptoms started 4-5 months ago. It looks like Dr. Conversion Disorder didn't bother to test them thoroughly for infectious triggers AT THAT TIME. From what I can tell, only 6 of the girls had ASO titers done (4 of the 6 had elevated titers, but they weren't elevated enough for his liking, so he "ruled-out" PANDAS). There are no reports of any other testing for infections having been done, no paired strep titers (to see if they were rising), no anti-dnase b , no mycoplasma tests, NO THROAT CULTURES. Yes, apparently "extensive testing" was done (per Dr. Minion on either the Dr. Drew show or Today Show, I forget which one) which included MRI's and EEG's but nobody bothered to run a simple throat culture? Today, 5 mo. later, the "crime scene" is cold. Even if there was evidence of infection 5 mo. ago, it may very well be gone by now. BTW, I don't know if you saw the recent Batvian article. http://thebatavian.com/howard-owens/mechtler-sensational-media-coverage-exacerbating-symptons-paitents/30309 Apprently Dr. Conversion Disorder is such a "good" neurologist that he can diagnose conversion disorder with a single consultation, and there is NO NEED to run any tests to rule out toxins or infections. (Of course that begs the question then, as to why Dent then spend thousands on MRI's?) The media has also misreported -- and some people have misstated -- that conversion disorder is a diagnosis that can only be reached after all other possible causes have been elminated, calling it a "diagnosis of exclusion." He said a good neurolgist will recognize conversion disorder on the first consultation with a patient. He used the example of hysterical blindness, which is a form of conversion disorder. If a patient claims blindness and the neurologist suspects conversion disorder, all a doctor needs to do is put his hand in front of the patient's eye and track the patient's involuntary eye movement. There's no need for environmental or infectious test to arrive at the correct diagnosis. It's the same with just about any diagnosis of conversion disorder. The initial exam will tell a physician a good deal about what is going on with a patient.
concerned lady Posted February 7, 2012 Report Posted February 7, 2012 (edited) Hi EAMom, I was happy to have just received an email from a PANDAS mom, containing a current press release by Dr. Trifiletti in it, and I wanted to share this press release with folks on this forum: ---------------------------------- "February 6, 2012 Press Release: LE ROY, NY TEENS: BEHAVIORS LINKED TO INFECTIONS Ramsey, NJ — February 6, 2012 — Rosario Trifiletti, MD has announced the results of the laboratory data that he collected in standardized fashion from eight of nine girls he examined in Le Roy, NY. National attention has been drawn to the plight of the teens who have been unable to control various bodily twitching and jerking movements. Dr. Trifiletti reported that five of eight girls show evidence of Streptococcus Pyogenes (common Group A strep) and seven of eight show evidence of infection with Mycoplasma Pneumonia (the bacteria that causes walking pneumonia). All eight girls tested show evidence of infection with at least one of those pathogens. Both of these bacterium have been associated with a PANDAS-like illness of sudden onset of motor and vocal tics. “A PANDAS-like illness is my working diagnosis, rather than a mass conversion disorder as others have suggested,” said Dr. Trifiletti. He has already started treating the girls with antibiotics and anti-inflammatory agents. When asked to comment on the continued insistence by Dr. Laszlo Mechtler that the girls have conversion disorder (or mass hysteria as Dr. Mechtler originally stated), Dr. Trifiletti said, “I'm confused by that because he's never actually seen or interviewed any of the nine girls I examined.” These findings provide a significant clue in the Le Roy High School mystery, but certainly many questions remain. Streptococcus Pyogenes and Mycoplasma Pneumonia are common pathogens that children throughout the world are exposed to every day. Why this town? Why this particular child and not another? Why such a curious presentation resembling Tourette syndrome? Until these questions are fully answered, the doctor said that the cluster will remain a mystery. “I suspect that genetic, environmental factors provide an immune background where the PANDAS-like response is possible to common pathogens. The infectious exposure is simply 'the straw that broke the camel’s back,'” said Trifiletti. However, the infectious exposure points the way to rational medical treatment for these children, which he said is of immediate importance. “Clearly, their response to the treatment I've started will be helpful in supporting my working diagnosis," he added. As with most illnesses, Trifiletti said there is a complex interplay of genetic and environmental factors involved. As with all illnesses, psychological factors possibly play some role as well. “All we have done here is provided evidence for exposure to two infectious agents as potential factors,” said Trifiletti. “I encourage efforts to further explore genetic and other environmental factors that likely are playing an additional role here.” To reach Dr. Trifiletti contact: Telephone: 201-962-7284 Email: trifmd@gmail.com Website: http://www.site.neurokidsr.us For additional Information about PANDAS [i'm adding this note in square parentheses, for clarity--not by Dr. Trifiletti -- to Dr. Trifiletti's press release: PANDAS stands for Pediatric (and older kids & adults too) Auto-immune Neuro-psychiatric Disorder Associated with Streptococcal and other bacteria, viruses, other organisms, and perhaps vaccines, etc.]: http://www.pandasfoundation.org http://www.pandasnetwork.org http://www.nimh.nih.gov/health/publications/pandas/pandas-frequently-asked-questionsabout- pediatric-autoimmune-neuropsychiatric-disorders-associated-with-streptococcalinfections. shtml http://www.askdrsears.com/topics/childhood-illnesses/ocd http://www.savingsammy.net ######### " ------------------------------ Sincerely, Carol/Concerned lady http://cantbreathesuspectvcd.com Edited February 7, 2012 by concerned lady
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