PANDAS Network .org Newsletter

Research Study Invitation,

Stanford Univ. PANS Meeting & More!

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In This Issue
Retrospective Research Study Invitation
PANDAS-PANS Specialist Meeting-Stanford University
My Son, the PANDAS Survivor
PANDAS-PANS Parent Support Group Central
Important Links



PANDAS Network .org's goal has been to clearly define each child's journey with this illness. After two years of behind-the-scenes efforts, we are pleased to announce that we helped facilitate a collaboration between the University at Buffalo and University of South Florida with the development of an online survey that will look at our journeys together as a collective.


Families will be asked to report specific details about their child's onset, treatment, outcome, and ability to receive care. This "retrospective" survey will allow researchers to identify the range of severity of PANDAS-PANS-PITAND cases. Once the data are compiled and analyzed, we believe doctors will be able to better formulate treatment plans.


This survey instrument will be published in a medical journal. It is unique because it offers families the choice to answer the survey anonymously for one or more child OR to have their data retained so that they could be used in future research studies.


We hope each family will participate in the survey whether newly diagnosed, currently receiving treatment, or fully remitted. This is a chance for EACH VOICE to be heard and for our community to move forward as a UNITED front.


The survey link can be found below and on our website.


Sincerely, Volunteers of



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 children with PANS including PANDAS and PITAND.


Participants in this study can elect to remain anonymous or they can elect to have their name and /or their child's information entered into a registry for future research. You can access information about the study to decide if you want to be involved by going to:



The Tip of the Iceberg!

PANDAS-PANS Specialist Meeting-Stanford University

By Diana Pohlman



Last month, Drs. Kiki Chang, Margo Thienemann, Child Psychiatry and Jenny Frankovich, Pediatric Rheumatology - Stanford University hosted a meeting with some of the leading physicians affiliated with university/research programs. Parents from PANDAS Network .org, including myself, were given the opportunity to host a dinner of appreciation at the Rosewood Hotel. It was funded through parent donations to our non-profit. We asked in turn that they listen to many concerns parents have in the PANDAS-PANS community.


Guests included Drs.: Sue Swedo (NIMH), Madeleine Cunningham (Univ. of OK), Pat Cleary (Univ. of Minn), Beth Latimer (Georgetown affiliate), Cheryl Koopman (Stanford Univ.), Michael Cooperstock (Univ. of MO), Kyle Williams, Mark Pasternack and Jolan Walters (Harvard) and Arnold Gold (Columbia Univ) and Sandra Gold (The Arnold P.Gold Foundation) as well as a few others on the staff at Stanford University.


I know we are all grateful to the Stanford doctors for having what will be the first of many "think tank sessions" on the nature and treatment of PANDAS-PANS. Their discussion meetings were confidential, of course, but at the dinner they did explain they are attempting to learn from each other's experiences and refine their treatment protocols for publication at some point. Up until this meeting, each doctor has been a pioneer, bravely doing their best to heal what is an increasing variety of PANS patients (in terms of length ill, co-infections, secondary autoimmune conditions, etc). They have every intention to continue to collaborate which is good for everyone! To say the least.


I and three other parents who have been advocating for PANDAS-PANS treatment on the west coast for five years were overwhelmed with relief to see everyone assembled together. Each of us briefly shared our child's onset, treatment and improvements over the last few years. They acknowledged that this is a new disease model for everyone and it will take time to figure out the best way to diagnose and treat children and adults going forward - but this was a strong, beautiful step forward.


I was able to share the Retrospective Survey Study (mentioned above) - and I was happy the doctors felt the information once compiled would guide them more confidently as diagnostic and treatment guidelines and written and published going forward.


I spoke with Dr. Swedo briefly and she couldn't tell me details but she is optimistic about the future recognition of this illness in the medical community. I asked when the IVIG Study would be published and all I got was "soon!" I told all the doctors that so many families are really struggling to find help, financially, emotionally - they understand that - and are pushing forward as quickly as they can. They will make efforts in the next year to more widely spread information to the medical community.


I believe the dinner expressed our appreciation for their work.......but honestly, they know they are too few and struggle themselves with the workload. But they are up for the challenge and realize this is a paradigm shift for the medical community, so there is resistance. The ramifications for this disease model are large and we are just at the tip of the iceberg.


Sincerely, Diana Pohlman

Founder and Executive Director, PANDAS Network .org


My Son, the PANDAS Survivor

By Karen J.


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 to PANDAS, today was nothing short of a miracle.


In September 2001, my 1st grader's life changed. Almost overnight he developed OCD including "bad thoughts" about a multitude of disturbing things and extreme eye-blinking tics. My husband and I immediately sought the help of a child psychologist, fearing that our son had been molested or experienced some other frightening circumstance that would precipitate his behavior. Although the diagnosis of OCD was made immediately, the cause of his abrupt symptoms would go unanswered for another six, agonizing years. Over a short time his eye blinking turned to vocal tics, shouting outbursts several time a minute when his tics were particularly exacerbated. There were days and weeks that he was unable to go to school, as the stress was just too much and the tics were too invasive. He was diagnosed with Tourette's syndrome and placed on medications, including Buspar, Risperdal, and fluvoxamine in order to control the tics, anxiety, and OCD.


During this time, as a mother on a mission, I searched for understanding. How did my very normal, intelligent son become so suddenly plagued? Early on I discovered information on PANDAS, but doctors in Madison, Wisconsin, had never heard of such a thing. Although our family physician was very open to the idea, he was ill-equipped to handle such an oddity. Our family is fortunate to live in an area with excellent health care; however, area neurologists refused to see my son, stating that Tourette's syndrome is a mental illness, not a neurological one. Desperate to find a cause, my son saw a renowned pediatric allergist who only counseled me on accepting the fact that my son would never get better.


Our child psychiatrist was a caring and wonderful woman who did not immediately embrace the PANDAS idea, but was open enough to our hunches. At that time, she reported to us that the psychiatric profession discounted PANDAS as a viable cause for childhood OCD and tic disorder. Still, we pressed on. I accepted my son 100 percent, but not his diagnosis-a mother knows, she just does. In the end, our child psychiatrist played an instrumental role in the PANDAS diagnosis, ordering tests that other physicians would not; she became our advocate.


Six years of debilitating tics brought both my husband and I down to our knees, quite literally. Praying for guidance, we were led to Dr. M. Kovacevic in the Chicago area who offered long-term hope (dare I say cure) for our son. We found Dr. Kovacevic was easily accessible and treated our case with the urgency that that my husband and I felt. My son's initial blood titer and a trial of steroids verified what I always knew in my heart-my son was having a physical reaction in his brain to cause his symptoms. In July 2007, my son had a life-changing IVIG treatment. It was so simple, yet so effective!


Today, my son is a performer. He is known in the community for his ability to play jazz on his saxophone and to stand in a silent, crowded gymnasium playing the National Anthem. He is planning a career as a saxophone performer and a music educator. One would never know the grueling six years prior to 2007 looking at him now.


Today, MY son gave a commencement speech!


 PANDAS-PANS Parent Support Group Central

By Kari Kling


Thank you to the support group leaders who have contacted me to let me know about upcoming meetings and then following up with me. Doing this is voluntary, but extremely helpful in assisting us to organize communication amongst people in your area. Once you contact me, I will post your upcoming meeting information on our website and do my best to support you in supporting others.
If you do not have a support group in your area and would like to begin a group, I would be happy to help you get started. Just send me an email at andI will guide you through the suggested procedures listed under "Resources" on the PANDAS Network .org website.
Lastly, I encourage you to make a copy of the "Disclaimer" that I have created (also listed under "Resources") for each member in your group to sign. This document protects everyone involved in knowing that any discussions about possible treatments are merely suggestions, and that one must consult their doctor.
With Healing Thoughts,
Kari Kling