msimon3 Posted November 15, 2011 Report Share Posted November 15, 2011 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 Link to comment Share on other sites More sharing options...
T_Mom Posted November 15, 2011 Report Share Posted November 15, 2011 GOOD HEAVENS!!! I surely hope a parent sees the post you made Kimballot--re: possible PANS !!! Now this is frightening... Link to comment Share on other sites More sharing options...
norcalmom Posted November 15, 2011 Report Share Posted November 15, 2011 Are Swedo and Cunningham aware of this? Link to comment Share on other sites More sharing options...
Familyof5 Posted November 16, 2011 Report Share Posted November 16, 2011 It is not uncommon for toxic mold to cause tics and symptoms similar to tourettes. I wonder if the school has a chronic mold problem that hasn't been mentioned. Link to comment Share on other sites More sharing options...
Iowadawn Posted November 17, 2011 Report Share Posted November 17, 2011 I saw a comment posted after an article I googled suggesting to find out if the girls had had the Gardisil vaccinations? Worth checking, I would think. Link to comment Share on other sites More sharing options...
Iowadawn Posted November 17, 2011 Report Share Posted November 17, 2011 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 Link to comment Share on other sites More sharing options...
Iowadawn Posted November 18, 2011 Report Share Posted November 18, 2011 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 Link to comment Share on other sites More sharing options...
AmySLP Posted November 18, 2011 Report Share Posted November 18, 2011 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. Link to comment Share on other sites More sharing options...
colleenrn Posted November 18, 2011 Report Share Posted November 18, 2011 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 Link to comment Share on other sites More sharing options...
tpotter Posted November 19, 2011 Report Share Posted November 19, 2011 I emailed the superintendent of schools this morning, and suggested they contact Dr. Leckman at Yale, since he heads the Tourettes Clinic there, and knows a great deal about PANDAS and other causes. Link to comment Share on other sites More sharing options...
T_Mom Posted November 19, 2011 Report Share Posted November 19, 2011 (edited) Everyone --Great job following up on this -- Edited November 20, 2011 by T.Mom Link to comment Share on other sites More sharing options...
msimon3 Posted January 16, 2012 Author Report Share Posted January 16, 2012 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 Link to comment Share on other sites More sharing options...
oivay Posted January 16, 2012 Report Share Posted January 16, 2012 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. Link to comment Share on other sites More sharing options...
EAMom Posted January 16, 2012 Report Share Posted January 16, 2012 "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! Link to comment Share on other sites More sharing options...
MomtoJake Posted January 16, 2012 Report Share Posted January 16, 2012 "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. Link to comment Share on other sites More sharing options...
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