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msimon3

"Tourette Outbreak" in Leroy, NY

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I do not think all these girls have PANDAS. I haven't heard anyone mention OCD. I am having doubts about this number of kids presenting w/ very similar symptoms. Just doesn't seem quite right. I think they are onto something with the toxic spill. Mr DuPont believes some kids may have PANDAS, some toxic exposure. It will be interesting to see how it all turns out.

 

As for the Dent doctors, I can't believe how often conversion disorder is diagnosed. How many kids do you think have PANDAS that have been seen by them and told it was conversion disorder. What a shame.

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"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...........

 

I think he is saying that is his offering them sanity by diagnosing them with conversion disorder. However, how THAT is "offering sanity" is completely beyond me.

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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.

 

Unfortunately, if these girls had been appropriately tested 3-4mo. ago (at onset) there would have been a better chance of finding a evidence of PANS (a positive culture or titers). But now, after 3-4 mo, titers may have already risen and fallen. The "crime scene" is old.

 

I do wonder if these girls have other symptoms that aren't being mentioned in the media. (At one point, anti-depressants were mentioned). People just don't want to mention psychiatric symptoms on national TV. Dr. Conversion Disorder also mentioned pre-existing anxiety.

 

I also wonder if this is a new strain of strep...something that triggers a morph between PANDAS and SC, and is more likely to affect older kids.

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"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...........

 

I think he is saying that is his offering them sanity by diagnosing them with conversion disorder. However, how THAT is "offering sanity" is completely beyond me.

I took this statement to mean that he is "the voice of sanity'" as compared to all those other people who are "willy-nilly" looking for underlying causes.

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I do not think all these girls have PANDAS. I haven't heard anyone mention OCD. I am having doubts about this number of kids presenting w/ very similar symptoms. Just doesn't seem quite right. I think they are onto something with the toxic spill. Mr DuPont believes some kids may have PANDAS, some toxic exposure. It will be interesting to see how it all turns out.

 

As for the Dent doctors, I can't believe how often conversion disorder is diagnosed. How many kids do you think have PANDAS that have been seen by them and told it was conversion disorder. What a shame.

 

I just can't wrap my head around why this 40 year old spill would suddenly cause this acute onset of symptoms in this cluster of girls. Many of them were friends, which in my mind also makes infection more likely. Being normal one moment, and then waking up from a nap with these motor symptoms sounds too much like PANS. If it was toxins, why would it suddenly show up at once? I would think toxic symptoms would be more long term...not going from zero to 60 all at once, unless of course they swallowed a bunch of the toxic stuff just b-4 their naps.

 

However, I do believe the chronic toxic exposure would make them more prone to cancers and perhaps even developing an auto-immune problem in the first place.

 

I do wonder if certain strains of strep are more likely to trigger "tic-ky" PANDAS and other strains are more likely to trigger "OCDish" PANDAS...which would account for the similiarity in symptoms. Nobody has ever (that I know of) looked at if certain strep strains are more likely to trigger a certain constellation of PANDAS symtpoms.

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I do not think all these girls have PANDAS. I haven't heard anyone mention OCD. I am having doubts about this number of kids presenting w/ very similar symptoms. Just doesn't seem quite right. I think they are onto something with the toxic spill. Mr DuPont believes some kids may have PANDAS, some toxic exposure. It will be interesting to see how it all turns out.

 

As for the Dent doctors, I can't believe how often conversion disorder is diagnosed. How many kids do you think have PANDAS that have been seen by them and told it was conversion disorder. What a shame.

 

 

Bear in mind, the newest proposed criteria from Swedo (I've seen it on one of her slides) includes environmental factors as a cause for PANS. PANS is the big umbrella, underneath an more specific PANDAS, PITAND, Environmental/other. They were aware way back in the late 90's that strep wasn't necessarily the only trigger. Dr. Swedo just felt it would be the easiest for the medical community to embrace or swallow. Last summer, seeing that the medical establishment was getting hung up on "proving" the strep (etiology), there was consensus among the doctors/researchers in the trenches, that it would be more productive to go this new route.

 

Those more in the know can elaborate or correct me. I have seen the slide decks Swedo has used regarding the shift to PANS. It is available on-line.

 

Dawn

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"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.

 

I'll bet that's why Dr. Conversion Disorder believes PANDAS is "exceedingly rare". He's too busy misdiagnosing it as Conversion Disorder!

 

I completely agree that it is TOTALLY scary that he diagnoses Conversion Disorder every 2-3 days.

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"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.

 

I'll bet that's why Dr. Conversion Disorder believes PANDAS is "exceedingly rare". He's too busy misdiagnosing it as Conversion Disorder!

 

I completely agree that it is TOTALLY scary that he diagnoses Conversion Disorder every 2-3 days.

 

 

I feel (only a little) for that young neurologist. She is being used like a husband that does something to trash his marriage and then grabs his wife and gets in the cameras--"Lookie, everyone. Even my wife will stand by me after this awful thing I did to totally embarrass her & the family." Makes me sick. She is getting brainwashed. If she is smart, to save her career, she would bolt while the bolting is good (after she apologizes!) 2 to 3 cases a WEEK!!!! MHO

Edited by Iowadawn

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"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.

 

I'll bet that's why Dr. Conversion Disorder believes PANDAS is "exceedingly rare". He's too busy misdiagnosing it as Conversion Disorder!

 

I completely agree that it is TOTALLY scary that he diagnoses Conversion Disorder every 2-3 days.

 

 

I feel (only a little) for that young neurologist. She is being used like a husband that does something to trash his marriage and then grabs his wife and gets in the cameras--"Lookie, everyone. Even my wife will stand by me after this awful thing I did to totally embarrass her & the family." Makes me sick. She is getting brainwashed. If she is smart, to save her career, she would bolt while the bolting is good (after she apologizes!) 2 to 3 cases a WEEK!!!! MHO

 

Yes, I wonder if Dr. Minion was under the guidance of more PANDAS friendly doctor, if her powers could be used for good instead of evil.

 

Unfortunately, upstate NY is Mink and Kurlan territory, I'll bet lots of docs in this area are all doing the same thing in terms of misdiagnosing PANDAS kids.

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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.

 

Unfortunately, if these girls had been appropriately tested 3-4mo. ago (at onset) there would have been a better chance of finding a evidence of PANS (a positive culture or titers). But now, after 3-4 mo, titers may have already risen and fallen. The "crime scene" is old.

 

I do wonder if these girls have other symptoms that aren't being mentioned in the media. (At one point, anti-depressants were mentioned). People just don't want to mention psychiatric symptoms on national TV. Dr. Conversion Disorder also mentioned pre-existing anxiety.

 

I also wonder if this is a new strain of strep...something that triggers a morph between PANDAS and SC, and is more likely to affect older kids.

 

 

I AGREE! I think the only way to see (at this point) is to do a trial of either a steroid burst and/or antibiotics to at least see if these might have an effect--

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Erin Brockovich had a very good explanation for why these girls are just now having problems 40yrs later. First, she said environmental exposure takes decades of exposure before you see the results.... cancers, autoimmune disease, etc.... She has been getting loads of email, over 1000 messages, telling her of individuals living in the area and their health issues.

 

Enviromental exposure may have triggered these girls obvious neurological issues. Last night, two moms said these girls do not all know each other. They range in age from 13-18 and have nothing in common but the school. Some of the girls know each other. Some know of each other. Some do not know each other at all. Mr DuPont arranged a meeting of all the parents. He said 2/3rd attended. The purpose was to find a common thread. Only the school was their common thread.

 

Maybe they all have PANDAS but I'm still skeptical. Certainly, its not being reported all their symptoms. If we were told they were experiencing more PANDAS symptoms, I'd be more likely to think they all had PANDAS. As Dr T said, there has never been a cluster of PANDAS like this. It might be possible but I'll wait on Dr T's evaluation results.

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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.

 

Unfortunately, if these girls had been appropriately tested 3-4mo. ago (at onset) there would have been a better chance of finding a evidence of PANS (a positive culture or titers). But now, after 3-4 mo, titers may have already risen and fallen. The "crime scene" is old.

 

I do wonder if these girls have other symptoms that aren't being mentioned in the media. (At one point, anti-depressants were mentioned). People just don't want to mention psychiatric symptoms on national TV. Dr. Conversion Disorder also mentioned pre-existing anxiety.

 

I also wonder if this is a new strain of strep...something that triggers a morph between PANDAS and SC, and is more likely to affect older kids.

 

 

I AGREE! I think the only way to see (at this point) is to do a trial of either a steroid burst and/or antibiotics to at least see if these might have an effect--

 

Yeah...if the Cunningham test was available that would certainly be helpful. Didn't the Cunningham Test help Lauren Johnson's family get a PANDAS diagnosis?

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Erin Brockovich had a very good explanation for why these girls are just now having problems 40yrs later. First, she said environmental exposure takes decades of exposure before you see the results.... cancers, autoimmune disease, etc....

 

But why after decades, would toxins cause these TS-like symptoms to SUDDENLY pop up in this cluster of girls? That sounds more like PANDAS/PANS/SC, due to an infectious trigger in the school.

 

On the other hand, the cancers and other low grade slow to develop problems (including perhaps a tendency to have auto-immune diseases in the first place) totally make sense to me....how that would be environmental. So, I'm not saying that EB doesn't have cause for concern. I just have a hard time pinning long-standing environmental toxins on the acute onset of TS-like symptoms in this particular cluster of girls.

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Could it be that they had PANDAS undiagnosed all along which opened their BBB and then were exposed to the same environmental toxin and the toxin entered their brains?

 

OR could it be that years of exposure to the environmental toxins opened their BBB and then they were exposed to strep or a combination of strep and staph or strep and EBV (the possibilities are endless), which then entered their brains? Could it be both?

 

Colleen

Edited by colleenrn

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