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MomWithOCDSon

Newsweek Ponies On (Unfortunately)

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I feel as though we're losing the information battle here. Again, I truly don't have an especially vested interest in the girls' issues being identified as PANDAS, PANS or PITANDS. I'd just prefer they move past this ridiculous Conversion Disorder theory, blaming emotional girls and social media for the woes just because the real culprit(s) isn't readily discernable (to them, at least).

 

And I really wish all these media outlets who have no compunction against reporting that "health officials have methodically ruled out organic causes" would do some real investigative reporting and find out exactly WHAT testing has actually been conducted and report upon those results as Dr. T has done. As I recall, after the town meeting at which school officials claimed that all sorts of soil and air quality tests had been conducted and the school found safe, the families who insisted were promised copies of those test reports, but they were never provided. :angry: So much for "methodically ruling out organic causes." Honestly, I just feel as though too many of these "journalists" are inside an echo chamber, repeating what another one of them has reported, but never actually checking primary sources or filing a single FOI for publically-available documents. What tests, exactly? And what results, specifically?

 

Newsweek - LeRoy Illness

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I agree its so hard to watch this. So hard to read the "group think". Definately DENT has really done a good job positioning themselves as the correct diagnosis. They have insulted the girls whom are not in their care by calling them bullies, they have minimized the infectious disease trigger (PANS) by saying we r an internet moms(therefore have no credibility) They have leaked language from Swedo, which she has not even validated. They then have made sure the press knew of sexual assaults on the girls. DENT has managed the press very well. I think they have a career opportunity in politics. With all the education they have clearly taken advantage of young teenage girls from lower income families whom have no way to fight back. How the press can piggyback on this spin makes me sick. Clearly the public wants to hear that this is not contagious and its because the girls are hysterical. That's the safest and easiet answer. We went down the same road as these children, my dd's first attack the doctors were concerned about a sexual assault or that she got a hold of drugs. (she was 5) These families are extremely brave and desperate to go public with their stories. And Dent has made them look like idiots because they did go public. Now DENT blames their lack of improvement on seeking additional care. See the spin. Its DENT or be destroyed.

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http://www.thedailybeast.com/newsweek/2012/02/12/what-s-really-causing-tourettes-symptoms-at-le-roy-high-school.html

 

This is from the Newsweek article from yesterday. Who disclosed this about the girls. Am I misreading this or did Dr Mechtler disclose this about the girls??

 

From article:

 

Heather Parker doesn’t get all the talk about stress. “Lydia didn’t even have a test in school the next day,” she says. In fact, things had been looking up ever since 2009, when Parker had finally gotten up the nerve to kick out the kids’ father, who has done time for assaulting his daughter. That was a bad stretch, she acknowledges, but not as bad as what happened to another girl, whose mother had discovered that her boyfriend was secretly filming her daughter undressing in her bedroom. When the mother confronted him, the guy blew his head off, right in front of the girl and her mother. “The more you ask these kids about their lives, the more you find out,” says Mechtler. “But if you ask them if there are stressors in their life they have no idea what you’re talking about.”

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Last week Dr Mechtler, leaked that the girls were lying when they said they had no stress, he said that there is a history of sexual abuse and many have no father figures. He put the bait out there for the press to start sniffing around and now they have more specifics on certain cases. Dr Mechtler is manipulating the press, and they r falling right into his trap. Instead of questioning him on his diagnosis, now the press is questioning the girls on whether or not they have stress in their lives. I hope everyone sees what a caring doctor he is. His reputation is more important than the privacy of his patients. What an ego. If he is confident with his diagnosis he should not feel the need to do this. Sorry but docs like him should be called on their behavior, but for some reason our society still has a culture of believing everything a doctor says without questioning them.

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Assualt could be physical. I am not playing devils advocate,really, but it does not say mechtler told them all this. This article is ridiculously one-sided. What a waste of space on the internet.

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I was just stating that IN THIS ARTICLE (the one that was posted in this post)it did not say mechtler told them all this. I would be happy to read what he does say. I have heard the psychiatrist from harvard insinuate about secret connections and various other implications.

I would not say credit to dt mechtler just trying to be fair with the info given IN THIS ARTICLE.

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I was just stating that IN THIS ARTICLE (the one that was posted in this post)it did not say mechtler told them all this. I would be happy to read what he does say. I have heard the psychiatrist from harvard insinuate about secret connections and various other implications.

I would not say credit to dt mechtler just trying to be fair with the info given IN THIS ARTICLE.

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http://www.thedailybeast.com/newsweek/2012/02/12/what-s-really-causing-tourettes-symptoms-at-le-roy-high-school.html

 

This is from the Newsweek article from yesterday. Who disclosed this about the girls. Am I misreading this or did Dr Mechtler disclose this about the girls??

 

From article:

 

Heather Parker doesn’t get all the talk about stress. “Lydia didn’t even have a test in school the next day,” she says. In fact, things had been looking up ever since 2009, when Parker had finally gotten up the nerve to kick out the kids’ father, who has done time for assaulting his daughter. That was a bad stretch, she acknowledges, but not as bad as what happened to another girl, whose mother had discovered that her boyfriend was secretly filming her daughter undressing in her bedroom. When the mother confronted him, the guy blew his head off, right in front of the girl and her mother. “The more you ask these kids about their lives, the more you find out,” says Mechtler. “But if you ask them if there are stressors in their life they have no idea what you’re talking about.”

 

"Assault" could be anything,it's pretty vague. Here's wikipedia (yeah, sorry).

"In law, assault is a crime causing a victim to fear violence. The term is often confused with battery, which involves physical contact. The specific meaning of assault varies between countries, but can refer to an act that causes another to apprehend immediate and personal violence, or in the more limited sense of a threat of violence caused by an immediate show of force."

 

My impression was that was known in the town (among the locals) of Le Roy that these things had happened. So, as long as Dr. Mechtler/McVige kept alluding to "terrible things" and "stress", the reporters were bound to come out sniffing and eventually find someone who would give more details.

 

Apparently PANS/PANDAS is boring news, so if it's not an EB chemical spill, then the reporters are going to find something else juicy in this story.

 

But, this makes be all the more irritated. THIS is why Dr. K. has the prototype of the typical PANDAS mom, educated, good in math, etc. Well, b/c if you are any other type of mom (or dad) then your kid gets a Conversion Disorder diagnosis (or some other diagnosis, bi-polar or tourettes) and you stop fighting/searching after the first 3-4 doctors they see...you just give up (plus, if you don't have a high school education yourself, it's pretty hard for these docs to take you seriously). You need resources (education, curiousity, time/energy to search the internet, some money or decent health insurance, ability to travel, ability to evaluate the science of PANDAS/take charge of your kid's care) to effectively treat PANDAS in most situations...it's a challenge. And if you don't have those resources (on some level), or if your kid that has some other issues at home (even if those issues that may have been caused by low-grade PANDAS) docs are going to slap on some other diagnosis, because apparently, only "good" kids from "good" homes can get PANDAS.

 

And don't you love the way Swedo is misquoted? "though the leading PANDAS expert from the National Institute of Mental Health said that’s unlikely, given that PANDAS is exceedingly rare and has never occurred in a group. " Did Swedo REALLY say PANDAS was "exceedingly rare"? Ughh. Those sound exactly like Mechtler's words. And I find it strange that Swedo would say "it has never occured in a group". Uhh...it has never occured in a group that she is aware of/has been documented (perhaps b/c they get that mass hysteria diagnosis instead??)

 

Swedo was quoted (by the Batavian guy) "There have been epidemics of rheumatic fever and Sydenham chorea (the neurologic variant of rheumatic fever). Sydenham chorea is the model disorder for PANDAS, so it is theoretically possible that such an outbreak could occur." <--that sounds more like Swedo, recognizing that it is theoretically possible

Edited by EAMom

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Excellent points (ALL OF THEM), EAmom.

I still want to read where Mechtler said there was sexual abuse. He could be sued for that kind of talk- unless it is public record & in that case, the reporter ought to say so. Additionally, sexual (or any form) abuse against a minor would not have the victim named typically.

Our PANDAS doc has mentioned the specifics of a typical "PANDAS-mom" & said, it may be true, but she feels that it is the personality, education and resources of moms of those kids that get TREATED. The rest of the PANDAS kids are out there, bi-polar, medicated, in jail, dead, who knows what.

I feel so badly for these girls, their families and this whole town. I hope there is a positive report soon; whether in the national media, through the private you-tube accounts or even if they post on the forum, about some recovery.

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I feel so badly for these girls, their families and this whole town. I hope there is a positive report soon; whether in the national media, through the private you-tube accounts or even if they post on the forum, about some recovery.

 

That concerns me too. Will the recovery by only with the severe motor symptoms, with the psychiatric symptoms persisting for decades (as with SC)? And some of these girls may be on so many psych. meds, that it may be hard to tell what is PANDAS and what is a side effect of the meds.

 

"However, further evaluation of the psychiatric sequelae of Sydenham's chorea demonstrated emotional and disruptive behaviours were common accompaniments. A follow‐up study showed high prevalence of emotional disorders (obsessive‐compulsive disorder, anxiety, depression) and disruptive behaviours in 75% of patients.20 More importantly, this study demonstrated that the behavioural consequences often remained for decades after the resolution of childhood chorea.20 " http://qjmed.oxfordjournals.org/content/96/3/183.full

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I feel so badly for these girls, their families and this whole town. I hope there is a positive report soon; whether in the national media, through the private you-tube accounts or even if they post on the forum, about some recovery.

 

That concerns me too. Will the recovery by only with the severe motor symptoms, with the psychiatric symptoms persisting for decades (as with SC)? And some of these girls may be on so many psych. meds, that it may be hard to tell what is PANDAS and what is a side effect of the meds.

 

"However, further evaluation of the psychiatric sequelae of Sydenham's chorea demonstrated emotional and disruptive behaviours were common accompaniments. A follow‐up study showed high prevalence of emotional disorders (obsessive‐compulsive disorder, anxiety, depression) and disruptive behaviours in 75% of patients.20 More importantly, this study demonstrated that the behavioural consequences often remained for decades after the resolution of childhood chorea.20 " http://qjmed.oxfordjournals.org/content/96/3/183.full

 

 

(EAMom, thanks for posting that quote from R.C. Dale's 2003 article, I had forgotten that review and it is worth reading again--)

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