Alex Posted February 6, 2012 Report Share Posted February 6, 2012 I heard Dr. T was going to be on TV tonight so I googled his name and found this news story from a few minutes ago. Not sure what show he is going to be on, but it looks like he could be making an announcement. http://www.13wham.com/news/local/story/LeRoy-Dr-Rosario-Trifiletti-tourette-like-sym/rp_NDA6qFU-B4cQhPEOZ1g.cspx Link to comment Share on other sites More sharing options...
kimballot Posted February 6, 2012 Report Share Posted February 6, 2012 I heard Dr. T was going to be on TV tonight so I googled his name and found this news story from a few minutes ago. Not sure what show he is going to be on, but it looks like he could be making an announcement. http://www.13wham.com/news/local/story/LeRoy-Dr-Rosario-Trifiletti-tourette-like-sym/rp_NDA6qFU-B4cQhPEOZ1g.cspx Looks like he might be on Dr. drew tonight.... http://drdrew.blogs.cnn.com/2012/02/06/exclusive-doctor-reveals-findings-in-le-roy-medical-mystery/ 04:08 PM ET Share Comments (Add comment) Permalink EXCLUSIVE: Doctor reveals findings in Le Roy 'Medical Mystery' We've just received big breaking news about the people in Le Roy, NY affected by tics and twitches. A doctor who has tested the girls says early results for six out of nine teens show something in common. He’s informing the families of what he’s learned right now. It’s not conversion disorder or the environment. So what is it? We can only reveal the exclusive details tonight at 9 p.m. ET/6 p.m. PT on HLN. Please join us for this huge development coming out of Le Roy. Link to comment Share on other sites More sharing options...
tpotter Posted February 6, 2012 Report Share Posted February 6, 2012 (edited) I heard Dr. T was going to be on TV tonight so I googled his name and found this news story from a few minutes ago. Not sure what show he is going to be on, but it looks like he could be making an announcement. http://www.13wham.com/news/local/story/LeRoy-Dr-Rosario-Trifiletti-tourette-like-sym/rp_NDA6qFU-B4cQhPEOZ1g.cspx Looks like he might be on Dr. drew tonight.... http://drdrew.blogs.cnn.com/2012/02/06/exclusive-doctor-reveals-findings-in-le-roy-medical-mystery/ 04:08 PM ET Share Comments (Add comment) Permalink EXCLUSIVE: Doctor reveals findings in Le Roy 'Medical Mystery' We've just received big breaking news about the people in Le Roy, NY affected by tics and twitches. A doctor who has tested the girls says early results for six out of nine teens show something in common. He’s informing the families of what he’s learned right now. It’s not conversion disorder or the environment. So what is it? We can only reveal the exclusive details tonight at 9 p.m. ET/6 p.m. PT on HLN. Please join us for this huge development coming out of Le Roy. I just heard the same thing. Edited February 6, 2012 by tpotter Link to comment Share on other sites More sharing options...
3boysmom Posted February 6, 2012 Report Share Posted February 6, 2012 Fingers crossed that this will be a good out come for the students and I hope that Dr. T is shown in a good light and PANS is presented in a way that pushes the ball rolling for our cause! Link to comment Share on other sites More sharing options...
T_Mom Posted February 6, 2012 Report Share Posted February 6, 2012 (edited) I just received this from Beth Maloney -- a press release which she said she is distributing on behalf of Dr. Trifiletti. Wouldn't this be wonderful if the treatment brings relief for these girls! Press Release: February 6, 2012 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: http://www.pandasfoundation.org http://www.pandasnetwork.org http://www.nimh.nih.gov/health/publications/pandas/pandas-frequently-asked-questions- about-pediatric-autoimmune-neuropsychiatric-disorders-associated-with-streptococcal- infections.shtml http://www.askdrsears.com/topics/childhood-illnesses/ocd http://www.savingsammy.net Edited February 6, 2012 by T.Mom Link to comment Share on other sites More sharing options...
peglem Posted February 6, 2012 Report Share Posted February 6, 2012 I just received this from Beth Maloney -- a press release which she said she is distributing on behalf of Dr. Trifiletti. Press Release: February 6, 2012 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: http://www.pandasfoundation.org http://www.pandasnetwork.org http://www.nimh.nih.gov/health/publications/pandas/pandas-frequently-asked-questions- about-pediatric-autoimmune-neuropsychiatric-disorders-associated-with-streptococcal- infections.shtml http://www.askdrsears.com/topics/childhood-illnesses/ocd http://www.savingsammy.net Why disturbing? Link to comment Share on other sites More sharing options...
Mayzoo Posted February 6, 2012 Report Share Posted February 6, 2012 I just received this from Beth Maloney -- a press release which she said she is distributing on behalf of Dr. Trifiletti. Press Release: February 6, 2012 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: http://www.pandasfoundation.org http://www.pandasnetwork.org http://www.nimh.nih.gov/health/publications/pandas/pandas-frequently-asked-questions- about-pediatric-autoimmune-neuropsychiatric-disorders-associated-with-streptococcal- infections.shtml http://www.askdrsears.com/topics/childhood-illnesses/ocd http://www.savingsammy.net Why disturbing? Did you get disturbing from this sentence? "a press release which she said she is distributing on behalf of Dr. Trifiletti." If so, it is distributing--not disturbing. Sorry if I misunderstood you. Link to comment Share on other sites More sharing options...
peglem Posted February 6, 2012 Report Share Posted February 6, 2012 (edited) I just received this from Beth Maloney -- a press release which she said she is distributing on behalf of Dr. Trifiletti. Press Release: February 6, 2012 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: http://www.pandasfoundation.org http://www.pandasnetwork.org http://www.nimh.nih.gov/health/publications/pandas/pandas-frequently-asked-questions- about-pediatric-autoimmune-neuropsychiatric-disorders-associated-with-streptococcal- infections.shtml http://www.askdrsears.com/topics/childhood-illnesses/ocd http://www.savingsammy.net Why disturbing? Did you get disturbing from this sentence? "a press release which she said she is distributing on behalf of Dr. Trifiletti." If so, it is distributing--not disturbing. Sorry if I misunderstood you. oops! My bad! My very tired brain read, "a press release which she said is disturbing on behalf of Dr. T." Edited February 7, 2012 by peglem Link to comment Share on other sites More sharing options...
T_Mom Posted February 6, 2012 Report Share Posted February 6, 2012 (edited) (I wondered the same Mayzoo--Peglem said it was a mis-read.) ________________________________________________________ If, indeed there is a positive outcome with Dr. T.'s treatment (antibiotics/steroids/IVIG if necessary) this would be wonderful !! --and may break the case of PANS wide open -- certainly has caught attention -- which may have FAR reaching positive effects--whatever the outcome. My hope is that it is this simple, and that the girls are truly helped with Ps treatments. At least there is now the avenue to test and SEE if there is a treatment effect w/ Ps treatments for these girls. I hope Dr. T. has great success in treating. Anybody find the link for the Dr. Drew episode tonight? --does anyone know if Dr. Sw. did make a statement/appearance as noted on another thread? Edited February 7, 2012 by T.Mom Link to comment Share on other sites More sharing options...
thenmama Posted February 7, 2012 Report Share Posted February 7, 2012 Did anyone see Dr Drew? Sigh. The guy just can't get past Mechtler/Conversion Disorder and the environmental angles. And he gave so little time to what is really going on with these kids. Also, someone needs to let Dr Drew know that PANS doesn't "predispose" kids to the tics/symptoms-- it CAUSES them! And why would he say Dr T needs to collaborate with Mechtler? He's a dangerous lunatic, and his minion McVige just seems vacuous. And to push that issue, the therapy they need (guess b/c he sees his profession at stake), that the docs should be collaborating (Mechtler, etc) and he totally shut down the parents when they were trying to talk about their kids' physical illnesses-- one of the girls had recurrent strep and got her tonsils out b/c of it, the other had mono within the past year-- and Drew defended Dent when the one Mom said she didn't know why Mechtler said he'd seen all of the girls b/c her daughter had never seen him in person-- he said, "Well, he meant his team had seen her..." I'm sure he's just trying to stir *&%#! up for sensationalist TV reasons, but grrr and ugh. Tuning in to this travesty reminded me why I don't watch TV. Link to comment Share on other sites More sharing options...
oivay Posted February 7, 2012 Report Share Posted February 7, 2012 (edited) We watched it. Dr. Bowtie certainly looks a lot less smug today. My 12 year old (Pandas & Sydenham's) thought this part was hilarious: Dr. Drew asked Dr. T (after Dr. T. said he had found strep and mycoplasma); "Are you currently working with Dr. Mechtler?" Dr. T answered "No." Followed by total silence. Dr. Drew didn't know what to say............ I think Dr. Drew assumed that all of the doctors would be working together in a big kum bay yah kind of way, the way normal people generally do. He probably isn't familiar with the animosity between the pandas vs. conversion disorder doctors, and it's probably safe to assume he's never been down the pandas route before. I really think it just isn't possible for someone like Dr. T to work with someone like Dr. Conversion Disorder. It's just total cognitive dissonance for someone like Mechtler to even consider something even resembling Pandas. A conversion disorder is just so nice and neat, and doesn't really require much thought or skill. And it's probably an easy $400 for him considering he says he can do 2 or 3 a week and it only takes 2 minutes per dx. Edited February 7, 2012 by oivay Link to comment Share on other sites More sharing options...
thenmama Posted February 7, 2012 Report Share Posted February 7, 2012 We chuckled about the silence after that answer, too. Loved Dr T's laconic replies on that front! I don't think Dr Drew really thought that they'd all be working together. I think he's well aware that Mechtler is trash talking and Dr T hasn't gotten into it with him-- he's been a class act. I think he was baiting him to see if he could shake things up a bit. His show is based on differing opinions and controversy, after all, I don't think Dr Conversion Disorder should be working period. Link to comment Share on other sites More sharing options...
Iowadawn Posted February 7, 2012 Report Share Posted February 7, 2012 You know usually the person making the MOST noise is the one with the problem. Dr. T has really only made ONE comment about the CD dx--a bunch of garbage. Now Mechtler is ALL OVER Dr. T's conclusion. He "knew that this would be his conclusion" and the tx will have the placebo effect & on & on----why does he HAVE to get so riled up. Dr. T, just don't get in the mud. You'll come out looking much better. So....WHere is Dr. Swedo?? Let's hope Dr. T & Swedo are talking!! Link to comment Share on other sites More sharing options...
kimballot Posted February 7, 2012 Report Share Posted February 7, 2012 We watched it. Dr. Bowtie certainly looks a lot less smug today. He even failed to wear a bow tie tonight! .... AND they did not show his umbrella book!! Wow - he actually mentioned that CBT is good for PANDAS ... Very true... but NOT really for the tics!! It is for the OCD piece that no one has even looked for or talked about in these girls. Do they have it?? Link to comment Share on other sites More sharing options...
EAMom Posted February 7, 2012 Report Share Posted February 7, 2012 We watched it. Dr. Bowtie certainly looks a lot less smug today. My 12 year old (Pandas & Sydenham's) thought this part was hilarious: Dr. Drew asked Dr. T (after Dr. T. said he had found strep and mycoplasma); "Are you currently working with Dr. Mechtler?" Dr. T answered "No." Followed by total silence. Dr. Drew didn't know what to say............ I think Dr. Drew assumed that all of the doctors would be working together in a big kum bay yah kind of way, the way normal people generally do. He probably isn't familiar with the animosity between the pandas vs. conversion disorder doctors, and it's probably safe to assume he's never been down the pandas route before. I really think it just isn't possible for someone like Dr. T to work with someone like Dr. Conversion Disorder. It's just total cognitive dissonance for someone like Mechtler to even consider something even resembling Pandas. A conversion disorder is just so nice and neat, and doesn't really require much thought or skill. And it's probably an easy $400 for him considering he says he can do 2 or 3 a week and it only takes 2 minutes per dx. oivay and thenmama....you guys are too funny tonight. :lol: Link to comment Share on other sites More sharing options...
Recommended Posts
Create an account or sign in to comment
You need to be a member in order to leave a comment
Create an account
Sign up for a new account in our community. It's easy!
Register a new accountSign in
Already have an account? Sign in here.
Sign In Now