PandasNetwork.org
 
stick figure sun
Welcome to the PandasNetwork.org Newsletter
February, 2nd 2012

Dear Families, 

 

 The LeRoy, NY mystery has brought a lot of attention to PANS / PANDAS and many doctors and parents have sent their messages to the media ----you ARE being listened to!
 

Dr. Susan Swedo from the NIH has recently offered her advice as well to the situation.

We've received many concerned emails and are answering them one by one....fast as we can.

More newsletters will be coming with parent experiences and new research efforts. With warm wishes for a healthy winter ....

 

Sincerely,

Diana Pohlman and the PandasNetwork.org Volunteers

 

 

 

 

 

Could the Students of Le Roy have PANDAS?
 A Summary of Recent Events and the Scientific American Article (2/2/12)
 
  

Not many people haven't heard of the multiple students in Le Roy, NY who experienced a sudden onset of Tourette-like movements. To date, there are doctors claiming it could be conversion disorder, groups thinking it may be environmental, some insisting it is vaccines. Then there is the other possibility that is getting more and more attention....PANDAS.


In recent weeks, Dr. Trifiletti has gone to see the students, offering his services for free in hopes of confirming or ruling out a diagnosis of PANDAS. Just yesterday, it was announced that the NIH has offered free examinations by two doctors, one being Dr, Swedo, the "founding researcher" of PANDAS.

Now, Scientific American released an article today titled Could an Infection Cause Tourette-Like Symptoms in Teenage Girls? In this article, the new upcoming name for PANDAS (PANS) is discussed. They bring to the light the possibility of PANS being the cause of the Le Roy situation in a question/answer interview with Dr. Michael Jenike from the IOCDF. The editors of the magazine welcome parent comments on this web-link to the story.

Among the topics discussed in Scientific American are: 
  • What is PANDAS, and why is it now called PANS?
  • How can an infection cause a mental illness?
  • What else makes you think these cases could be PANS?
We are happy to see increasing numbers of people, doctors, and media outlets bringing to light PANDAS/PANS and pushing to have these students correctly assessed for the disorder. PandasNetwork.org is closely watching the events as they unfold and doing what we can to help. Regardless of what the final diagnosis is, we truly hope these students find out the cause of this sudden onset of tics and they get the help they need.



Bay Area PANDAS Parent Symposium
*Save The Date*
 

 

You are enthusiastically invited to participate in this ground-breaking (parent-only) event:

 

Bay Area PANDAS Parent Symposium

Saturday April 28, 2012
10am-5pm
Embassy Suites, Burlingame CA
(by the San Francisco Airport )

 

Details on how to RSVP will be coming soon!

Keep up to date by visiting us at http://pandasparentsymposium.blogspot.com/ 
 
What to Expect:

  • A full day of networking, education, inspiration, discussion and advocacy organizing. 
  • PANDAS experts will be presenting! 
  • Beautiful surroundings and excellent company 
  • Lunch and refreshments
 Anticipated Cost to Attend the Conference:

  • Discounted block of rooms at Embassy Suites for $119/night will be available soon (includes breakfast and Happy Hour gathering / reception) 
  • Conference and luncheon fee will be somewhere in the range of $20-50 (or less if we are able to have the event fully sponsored - which is our goal!)
We are looking for sponsors! For more information about sponsorships please contact:
 
Amy Smith at amyjoysmith@comcast.net or
Eric Dyssegard at eadyssegard@netscape.net
 
This conference is being organized and presented by a very caring group of West Coast PANDAS parents in partnership with PandasNetwork.org and Hill Park Medical Center.

 

STAY TUNED FOR MORE INFO!!!

 

 
 
In This Issue
Could the Students of Le Roy have PANDAS?
Bay Area PANDAS Symposium
Quick Links

 

 
 


 


Join Our Mailing List