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NE Conference Highlights

PANDAS Network Table

 UPDATED 12/9/2013 to include additional notes.

November 9 and 10 proved to be a well informed and uniting day for parents, researchers, and physicians. With over 400 people in attendance, this was the largest conference solely devoted to PANDAS and PANS. Thank you to the NE PANS/PANDAS Parents Association for their great work and . . . → Read More: NE Conference Highlights

Online Research Study Now Active: “Retrospective” Survey

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This survey is closed. Thank you for participating!

. PANDAS-PANS-PITAND Retrospective Research Study Invitation .

You are invited to participate in an online survey research study from the University at Buffalo in collaboration with Dr. Tanya Murphy from the University of South Florida to learn more about the symptoms, diagnosis, interventions, and clinical course of . . . → Read More: Online Research Study Now Active: “Retrospective” Survey

My Son, the PANDAS Survivor

My son, PANDAS survivor

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My Son, the PANDAS Survivor by Karen J.

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Today, my son not only graduated from high school, but he gave a commencement speech to over 2,000 people. While this might not be considered too out of the ordinary, for the parents of a kid who once suffered severe vocal tics and OCD due . . . → Read More: My Son, the PANDAS Survivor

Treatment and Relapse Survey Results, NORD, and more!

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Treatment and Relapse Survey Results, NORD, and more! December 2012 newsletter is now available! Click here to access information on survey results, NORD, IVIG study, Autoimmune encephalitis paper by Dr. Finn Somnier, Thank you, Johnny, and Support Group Central.

If you’d like to receive future newsletters right to your inbox, sign up on . . . → Read More: Treatment and Relapse Survey Results, NORD, and more!

IOCDF Conference: Parent Summary #1

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The following is one of two parent summaries of the 2012 IOCDF Conference. We advise the reader to view both summaries as there are some overlaps, but also unique observations in both. Parent Summary #2 can be found here.

 

Parent Summary #1 (by parent volunteer, Vickie)

The IOCDF conference was held July 27-29th in . . . → Read More: IOCDF Conference: Parent Summary #1

PANDAS doesn’t deter boy’s acting dreams: The Nass Family

In the News

It is wonderful to read stories of how PANDAS children have the strength and perserverance to overcome the obstacles associated with disorder to live a full life and fulfill their dreams!

In “The Commecial Appeal” website, Garrett Nass is featured in the story “Disorder doesn’t deter boy’s acting dreams“. Garrett has PANDAS, and after treatment, is now pursuing . . . → Read More: PANDAS doesn’t deter boy’s acting dreams: The Nass Family

11 Year Old Overcomes PANDAS to Accomplish Great Things: PANDAS in the News

In the News

11 year old Hayden Young is proof at the strength and determination kids with PANDAS have.

In the article, Craig James Congratulates Young Texan Who Overcame Autoimmune Disorder to Pitch Perfect Game, it took the Young Family 18 months of misdiagnoses to finally get to the true root cause of Hayden’s decline that consisted of . . . → Read More: 11 Year Old Overcomes PANDAS to Accomplish Great Things: PANDAS in the News

The Immunobiology of PANDAS & Tourettes: A Way Forward 2011

The Immunobiology of Tourette’s Disorder, Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus, and Related Disorders: A Way Forward was written by Tanya K. Murphy, M.D., Roger Kurlan, M.D., and James Leckman, M.D. and originally published in the JOURNAL OF CHILD AND ADOLESCENT PSYCHOPHARMACOLOGY, Volume 20, Number 4, 2010, Mary Ann Liebert, Inc., Pp. 317–331, DOI: . . . → Read More: The Immunobiology of PANDAS & Tourettes: A Way Forward 2011

Summary: What Parents Are Reporting

What Parents Are Reporting: Summary of notes from the December 2010 Newsletter:

Multi-Generational Family Reports

There are six reports now from families that the PANDAS syndrome has been experienced for at least two to three generations. This is not the norm but it is an interesting clue perhaps for all of us that there . . . → Read More: Summary: What Parents Are Reporting

Video: Jamie’s Story; Our Child’s Recovery from PANDAS

A video posted by the parents of a boy who was diagnosed in 2001 and has since recovered. They update their blog as news comes in, check it out!

This is the story of Jamie. When Jamie was 9 he began to rapidly exhibit symptoms, which looked a lot like OCD and Tourette’s syndrome, a . . . → Read More: Video: Jamie’s Story; Our Child’s Recovery from PANDAS