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"Tourette Outbreak" in Leroy, NY


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If it was my child -- and knowing what we know re: the slippery diagnosis of PANS, that is exactly what I would be asking for--

 

A TRIAL of 30 day abx and a Dr. K. style (www.webpediatrics.com) trial of prednisone to "test" to see if it is PANS inflammation based.

 

(I would really like to know if any of the girls have had OCD symptoms too--or age regression, or urinary frequency--all PANS related potential symptoms and, of course, much harder to own in public than a physical issue.)

 

All I keep thinking is that it was a neurologist, a specialist in tourettes actually, who first suggested a steroid burst for my d during her PANS worst episode -- antibiotics are so incredibly benign, worth a try.

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Hi All,

 

I just found this board from an Internet search. I am the mother of two teens who attended William Bryd High School in Vinton, VA during the time when some students there had broken out with Tourette like symptoms in 2007. I wanted to introduce myself and offer any assistance I can to help get to the bottom to what happened at WBHS and what is now occurring with the girls at LeRoy HS in NY. I've been going over this page on your thread. Here's my email via Children's Hope and Voice child advocacy group: childrenshopeandvoice@yahoo.com.

 

Neither of my kids exhibited the symptoms but a few of the girls with the symptoms at WBHS were friends of my daughters. I've emailed Erin Brochovitch and am leaving contact info on various HLN / Dr. Drew reports to offer my assistance in trying to coordinate the students from WBHS, being that they won't be able to get any contact info from the school system of Roanoke County (WBHS).

 

I'm new to this info so I'm definately the layman here. But, I want to help get answers for all concerned. It was a very scary time. It was terrifying trying to determine whether to send my kids to school or not. My hopes and prayers go out to these families of the girls of LeRoy HS.

 

Tonya Meadows

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Tonya,

 

That is a great idea. I'm sure that the students and parents from Leroy would love to be able to communicate with the WBHS students. They may find your info on other forums (HLN/ Dr. Drew) prior to finding it here, but if anyone shows up, we can share your post.

 

You might want to reach out to the uncle and father of a student (and another female student) that had a similar onset in Indiana. He is trying to establish a place where they can all connect too, although if PANS/PANDAS turns out to be the linking factors, this forum would be a great resource for them.

 

Here is the link with the Indiana students info

http://www.flutrackers.com/forum/showthread.php?t=177170

 

Are you aware of the condition, today, of any of the students that were affected?

Edited by kim
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Yet another link.......

 

http://www.wivb.com/dpp/news/local/nj-doctor-tests-leroy-students-for-pans

 

Despite testing for PANS, Trifiletti said, "I think Dr. McVige and her colleagues at Dent have done an excellent job in attempting to evaluate these patients to the best of their abilities, and their conclusions are reasonable."

 

"in attempting to evaluate these patients to the best of their abilities"...............

 

Dr. Jennifer McVige from the Dent Neurologic Institute appeared on 'CBS This Morning' and stands by her Conversion Disorder diagnosis. She insisted the symptoms these students are showing are stress-related.

 

"Somebody has either a lifetime of many stressors that build up, or one individual stressor and it kind of brings that out in a physical form," explained Dr. McVige.

 

Give it up already McVige, we aren't buying it.

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Here's Dr. T.'s recent statement:

http://www.wgrz.com/news/article/153259/1/Doctor-Issues-Statement-About-Meeting-With-LeRoy-Teens

 

"I had the privilege and pleasure of meeting and examining nine of the children, involved in the Leroy High School cluster on Sunday, January 29th.

 

All children were accompanied by their parents. The children I examined were girls and ranged in age from 13 to 20 years of age. The only other common feature between all of the cases besides gender is the lightning-like onset of symptoms. The symptoms and signs are best described, as others have pointed out, as a "Tourette-like illness", although the duration of symptoms are not yet sufficient to make a formal diagnosis of "Tourette Syndrome".

 

There are potential medical causes that have not yet been fully excluded, including PANS (Pediatric Acute Neuropsychiatric Syndrome; formerly called PANDAS), which may be associated with a variety of infectious triggers. PANS is a relatively common illness, and there are thousands of cases diagnosed across this country, but none with showing this marked clustering. I evaluated the children for PANS using consensus criteria developed at a July 2010 Conference at the National Institute of Mental Health along with testing for potential infectious triggers of PANS. PANS is important to exclude as it is a potentially medically treatable condition.

 

The "mass conversion disorder" diagnosis given by the Dent Institute is a diagnosis of exclusion, and as such, can never be "ruled out" . It would be a reasonable working diagnosis only if no better medical explanations can be found. I think Dr. McVige and her colleagues at Dent have done an excellent job in attempting to evaluate these patients to the best of their abilities, and their conclusions are reasonable. There is simply an honest difference in opinion between physicians here, which happens all the time in medicine. I believe that all of the physicians involved here truly want all these children to be well again and will ultimately work together to achieve that aim.

 

The results of my tests will take 1-2 weeks to return. I will again brief the media after results return and are reviewed with the patients as to my conclusions, but will have no further comment before that time.

 

I have no comment on the potential role of any environmental neurotoxins and did no testing relative to that possibility.

 

Dr. Rosario Trifiletti MD PhD

Child Neurology

Edited by EAMom
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Yet another link.......

 

http://www.wivb.com/dpp/news/local/nj-doctor-tests-leroy-students-for-pans

 

Despite testing for PANS, Trifiletti said, "I think Dr. McVige and her colleagues at Dent have done an excellent job in attempting to evaluate these patients to the best of their abilities, and their conclusions are reasonable."

 

"in attempting to evaluate these patients to the best of their abilities"...............

 

Dr. Jennifer McVige from the Dent Neurologic Institute appeared on 'CBS This Morning' and stands by her Conversion Disorder diagnosis. She insisted the symptoms these students are showing are stress-related.

 

"Somebody has either a lifetime of many stressors that build up, or one individual stressor and it kind of brings that out in a physical form," explained Dr. McVige.

 

 

 

Maybe a lifetime of Group A Strep stressors ;) add in some lyme or toxic waste...

 

certainly could develop into something in my book!

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Yet another link.......

 

http://www.wivb.com/dpp/news/local/nj-doctor-tests-leroy-students-for-pans

 

Despite testing for PANS, Trifiletti said, "I think Dr. McVige and her colleagues at Dent have done an excellent job in attempting to evaluate these patients to the best of their abilities, and their conclusions are reasonable."

 

"in attempting to evaluate these patients to the best of their abilities"...............

 

Dr. Jennifer McVige from the Dent Neurologic Institute appeared on 'CBS This Morning' and stands by her Conversion Disorder diagnosis. She insisted the symptoms these students are showing are stress-related.

 

"Somebody has either a lifetime of many stressors that build up, or one individual stressor and it kind of brings that out in a physical form," explained Dr. McVige.

 

 

 

Maybe a lifetime of Group A Strep stressors ;) add in some lyme or toxic waste...

 

certainly could develop into something in my book!

 

Or maybe the real stressors are the local PANDAS naysayer docs? :lol: :lol: :lol:

Edited by EAMom
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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. Drew also made a point that conversion disorder supposedly follows some sort of "traumatic event" or illness, as described in the literature, which this new "expert" (I'll call him Dr. W. until we can find a clip or transcript that confirms his full name) 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! :wacko:

 

"Conversion disorder" aka Mass Hysteria?!?! How long are these self-impressed morons going to persist with this unsupportable load of you-know-what?! :angry: It's enough to bring on a case of the "vapors" and "the consumption"! Egad! <_<

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I saw Dr Drew last night. I am very suspicious that neurotoxins may be involved in some of the kids. Wow, Erin Brokovich and her collegue uncovered a huge spill site never cleaned up and she's been getting emails from people in the area about their ailments. The EPA is now doing a huge mea culpa. They were quoted as saying "we dropped the ball" on this one. One of the parents contacted Ms Brokovich in Dec and then again in Jan, when someone anonymously slipped a report about the toxic spill under her door. So interesting. The stonewalling school is not making itself look good.

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