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"Tourette Outbreak" in Leroy, NY


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I thought this was an interesting event in the news. While PANDAS/PITANDS was not mentioned, it seems to fit the sudden onset profile and epidemiology.

 

Six students at a high school in Leroy, NY recently became ill and developed symptoms of Tourette's:

 

http://wbtai.com/LocalNews/tabid/115/articleType/ArticleView/articleId/1558/Neurologist-Speaks-About-LeRoy-HS-Tourettes.aspx

http://www.wkbw.com/home/leroyjac-133424788.html

http://www.wgrz.com/news/article/140966/37/LeRoy-Students-Exhibit-Tourette-Like-Symptoms

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The reporting of this starting in late October. I just sent an email to a reporter who had done a story asking if he could relay some info to the parents and directed him to the pandasnetwork.org website, so he could be enlightened. They do not appear to be getting anywhere and a variety of docs and professionals have been contacted. I want to scream to get these girls some help. One spoke that she woke up from a nap and started ticcing!! Dawn

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The reporter emailed back and said that many had mentioned this and that he felt the health officials were looking into it. Slowly, the word is getting out. Just thought I'd let you know. Dawn

 

We live in Binghamton NY, East of this area. I did post that our PANDAS story, as well as that of another child in our community, will air on Weds. Nov. 23 on WICZ, Fox 40. It will be available online at 7 pm.

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I just emailed the Interim Director of the Genesee Health Department (Leroy is in Genesee County) and the head public health nurse there, giving them all of Dr. Swedo's contact info, as well as all of her colleagues listed on the NIMH site. We will see where that goes...

 

Colleen

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Updates:

 

"Mass Hysteria" is the cause per Dr. David G. Lichter, a clinical professor of neurology at the University at Buffalo.

http://www.buffalonews.com/city/article707323.ece

 

Parents still looking for a cause:

http://www.whec.com/news/stories/S2451060.shtml?cat=565

 

excerpt:

Dr.Gregory Young from the New York State Health Department did say the girls are diagnosed by their doctors, getting treated and getting better. But when you talk to the parents of some of the girls -- that's just not the case.

 

"Well in my opinion we've only just begun. If you haven't found anything then we have to turn some more stones and we need to have another investigation that is not government related," Jim Dupont said.

 

"My frustration is until September 10th of 2011 I had a healthy girl, a girl that was in junior high who loved school had a lot of friends, was very happy high honor roll and then all of a sudden she wakes up from a nap and she's twitching out of control," Beth Miller said.

 

Dupont and Miller are starting a support group for all the parents. They think if they work together they can get somewhere.

 

Here is the contact information:

 

Jim Dupont: (585) 746-2001

Beth Miller: (585) 356-7508

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It's interesting that one of the girls said that the medicine she was taking made her sleep all day.

This also happened to my daughter when we tried tegretol.

She said her head and neck were shaking so badly it was affecting her back.

Again, these are the symptoms my daughter started with, although hers were so bad she couldn't read. We found a neck brace/cervical collar helped to keep her straight enough to eat. She also had dysphagia so we had to use broth etc.

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"My frustration is until September 10th of 2011 I had a healthy girl, a girl that was in junior high who loved school had a lot of friends, was very happy high honor roll and then all of a sudden she wakes up from a nap and she's twitching out of control," Beth Miller said.

 

 

This just reaks of PANDAS (or SC?), definitely acute onset when she can remember the date and time her dd changed!

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"My frustration is until September 10th of 2011 I had a healthy girl, a girl that was in junior high who loved school had a lot of friends, was very happy high honor roll and then all of a sudden she wakes up from a nap and she's twitching out of control," Beth Miller said.

 

That just gave me chills. My DS onset was Sept. 10 2011. The difference is that he was diagnosed within a week and has been on treatment dose ABX for 4 mos. He's not back to baseline but neither is he in that darkest place still. I really hope there are some answers for these girls and soon.

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