This news story had me remembering and wondering.

[Not_the_Same]

article

 

http://www.wgrz.com/news/article/150087/37/Update-on-Tourettes-Like-Illness-in-Leroy

 

 

It seems the NYS Department of Health does not want to reveal too much information.

 

I would like to know a bit more.

What is the diagnosis?

What is the treatment?

 

I can not help but wonder, if the students at that school, had been given a vaccine recently, I mean something like the swine flu vaccine.

 

I just wanted to share this story with you people on this forum, if you had not discussed this yet.

If any of you know more about i would be interested.

 

 

best wishes to you all

_John

[Iowadawn]

I smell a cover-up. The "officials" say that there is a dx, but one of the parents say the docs won't tell them what is causing this in their daughter's dx. I've read the HPV is implicated. One reporter said my email suggesting PANS was not the first. This is soooo fishy. MHO. Dawn

[britneymag]

The first thing I thought of was HPV. Imagine that, the department of health won't tell these people what their children have. I'm surprised that it was even mentioned in the news. I hope tese parents do some digging on their own and don't just count on the CDC to tell them what it is.

[chase23]

I have often wondered if there is very specific strain of Strep that causes Pandas. i know alot of kids had strep many times prior to pandas. just wondering if that particular strain struck this school

 

The first thing I thought of was HPV. Imagine that, the department of health won't tell these people what their children have. I'm surprised that it was even mentioned in the news. I hope tese parents do some digging on their own and don't just count on the CDC to tell them what it is.

[Iowadawn]

The health officials said it was not infectious, wasn't environmental--like mold, about four total things it wasn't. About the only things not mentioned was vaccines. Don't know. Dawn

[Johnsmom]

They took HPV off the market in Spain because it was making girls sick. Mysterious illness my butt!

[Iowadawn]

Why are the parents so unbelievably quiet. One father stated that the neurologist their girl saw wouldn't tell them a dx. These girls could be getting help. There are comment sections following new stories. I have left a few in hopes that the girls will get some real help. The national news should be all over this. I'm sure they have been hushed. IF this is PANS caused by vaccines--man would that ever blow open a Pandora's Box!!!

This wreaks!! I hope these "officials'" bottoms are getting warm and they start having problems sitting still. Dawn

 

Hey where's the Canary Party. They should be all over this. (It's a real organization.)

Edited January 13, 2012 by Iowadawn

[kimballot]

P Mom started another link on this and she had cited the local town paper.

 

I found the article on that paper and they quote a local neurologist who is the head of neurology at the University of Rochester saying that they used to think strep could cause tics, but that has since been "disproven".

 

This is the same institution from which Dr. Kurlan collaborated when working on his infamous longitudinal study. Apparently he did not send a copy of his CANS article back to his colleagues in Rochester, or they would know that strep and other infections CANS now cause tics!!

 

I wonder if these girls had the full CANS workup... or maybe not, since they are in their later teens and therefore must not qualify for a "childhood" diagnosis.

 

PANS has been suggested several times to officials here. Apparently falling on deaf ears.

 

Here is the article http://thebatavian.com/howard-owens/expert-discuss-tic-outbreak-le-roy-meeting-scheduled-wednesday/29916#comments

 

and here is the comment section.... Go at it folks!

 

http://thebatavian.com/user/register?destination=node%2F29916%23comment-form

Edited January 13, 2012 by kimballot

[kimballot]

WAIT.. it gets better - now they have mass hysteria! http://www.buffalonews.com/city/article707323.ece

[tpotter]

WAIT.. it gets better - now they have mass hysteria! http://www.buffalonews.com/city/article707323.ece

 

 

OMG...how much worse can this get? Is there any way that we can get to these parents, besides writing followups to the articles? I know that if it was me, I would not be looking at the comments, because I barely read news articles online. Does anyone know anyone who knows one of the families?

[airial95]

Another version from the Rochester Paper

 

This one has video from the Buffalo news cast.

[P_Mom]

This was on Fox News this morning! So, it is getting national coverage....oh, what an opportunity it could be! I know "they" have been made aware...atleast people "involved" and it seems like they are blowing the possibility off...BUT, not sure that the parents have been made aware. Besides having a direct line to one of them....how can we be sure they are informed. How I wish I could speak to one of them....any ideas??

 

My mother-in-law even called me first thing this morning to tell me about the news coverage on Fox about the kids in NY with the tics. She said someone needs to tell them what is going on. I told her we are already trying! And just a thought...why just the tic manifestation?? Or are they leaving out the "other stuff?"

[Iowadawn]

Can someone get to Swedo or Cunningham or Leckman--he's a tic guy. Would they be able to get to the parents or school officials. Anybody have a hotline to them? Dawn

[EAMom]

okay, I must comment on this article

http://thebatavian.com/howard-owens/expert-discuss-tic-outbreak-le-roy-meeting-scheduled-wednesday/29916#comments

 

The "expert" they interviewed was Johnathen Mink...he's one of the authors (along with Kurlan, Singer, etc) on the CANS http://www.latitudes.org/forums/index.php?showtopic=15958 paper!!!!!

"Today, The Batavian spoke with Dr. Jonathan Mink, chief of child neurology at the University of Rochester Medical Center and co-chair of the scientific advisory board of the Tourette Syndrome Association."

And Mink is being very misleading here, playing with words:

"At one time, some scientists speculated that strep infections could cause Tourette's, but new research has proven that isn't the case, Mink said."

Well gee, I would agree with that! Strep infections don't cause Tourette's. But Strep does cause PANDAS/Pitands/PANS (and now CANS) with tics that might look like TS!!! But what average person reading that article is going to pick up on that distinction?

 

And sorry, this is non-sensical to me. (Is this something that has even been studied or proven?):

"A person gets exposed to those symptoms and they take on those symptoms," Mink said. "It may be that the stresses of everyday life and how these girls deal with stress (that is the cause)."

 

It's possible, he said, that one or two girls had Tourette Syndrome, the symptoms grew more pronounced and the other girls picked up the "habits" of the girls with Tourette's. Or maybe none of them have Tourette's, but the tics got passed along like habits nonetheless.

 

And then this:

Which leaves one other known cause of tics: Stress.

 

Mink said he doesn't want to leave the impression that he is characterizing the situation in any way involving the girls in Le Roy, but people have different ways of responding to stress -- some people sweat, some develop diseases, some heart conditions, and some develop tics.

 

Hmmmm...so they mentioned several possibilities, and "ruled them out" and so it must be stress. Did anyone notice that vaccines were specifically NOT mentioned? And does anyone else think it is a tad sexist to pin this on "stress". If this were 12 teen boys (instead of girls) would he have been so quick to say "stress"?

 

And I'm confused about this article http://www.democratandchronicle.com/apps/pbcs.dll/article?AID=2012120112005

Wednesday night, administrators said all 12 students have been diagnosed and are being treated. They are not releasing causes due to HIPPA (sic) laws.

I can see how that would mean officials couldn't release the diagnosis to the public, but to the parents? And how is it even legal to treat the students (assuming they are minors) without the parents consent? Here's something on HIPAA laws and minors, there are only certain situations where a parent won't be told a diagnosis. http://privacy.med.miami.edu/glossary/xd_minors.htm And does this mean the girls themselves have been told the diagnosis? It's not clear from the article. And if they were told the diagnosis, was it explained in plain English (not medical mumbo jumble), after they are only 17.

Edited January 13, 2012 by EAMom

[Iowadawn]

I just fired off an email to an Evan White who has been following this story on WHAM 13. I have written him before when the story was new and he has replied. I implored him to be a hero & do some serious investigative reporting, outlining some reasons why, also including names of researchers that could help. He has an email address listed with his story, so I used it. Just an idea. dawn