PANDAS Network Newsletter - April 2019
Learn about important new findings regarding PANDAS/PANS/AE research from Columbia University, The Agalliu Lab
Participate in a Study: Post-traumatic Growth in Emerging Adults 18-26 Diagnosed with Infectious and Autoimmune-Mediated Encephalitis
My name is Cori Preble Zdebel and I invite you to consider participating in my research study.
I am a Doctoral Candidate in Clinical Psychology at Fielding Graduate University, as well as a parent of a child diagnosed with Autoimmune Encephalitis. My study-interest was inspired by my experience as a caregiver to a child with a chronic illness. Part of my research and dissertation involves the study of post-traumatic growth in emerging adults diagnosed with infective and autoimmune-mediated encephalitis.
It is believed that an emerging adult who has experienced and endured the effects of a serious immune-mediated encephalopathy could provide important understanding and insights, particularly in how they understand their illness-experience, how they make sense of it, and how they cope or perhaps grow from their acquired disease.
To Participate in the Study: 
The total amount of time required to participate will take approximately one hour. 
Participants should be between the age of 18-26, speak English, and have been diagnosed with infectious or autoimmune-mediated encephalitis for at least six-months. 
The study includes two parts: 
1) a short survey 
2) an interview over Skype or phone

If you meet the above criteria and agree to participate, please either press the link below or copy and paste the link. When getting to the survey page, select "Yes I Consent" and you will be directed to the informed consent form that will provide some important information before directing you to the survey. Additionally, please remember to leave your email address at the end of the survey so I am able to contact you for a short interview and provide you with a thank you Amazon gift card. 

Summary of Psychoimmunology Meetings Advances in AE and Mild Encephalitis  
Najjar (Lenox Hill, NY), Bechter (Univ Ulm, Germany), Brown (Westmead, Australia)
" [The] development of an expert consensus on the evidence-based clinical practice guidelines addressing the diagnostic challenges and therapeutic dilemmas of new-onset psychosis of suspected immune origin is warranted."

This is a very detailed reported based on two years of discussion by experts on how to proceed with investigating and healing children and adults suffering from Autoimmune Encephalitis. Included in this is a brief case history by Greenberg of PANDAS-like illness from Lyme bacteria.

Brief Highlights: The Ulm University Conference had widespread interest to begin the DEVELOPMENT OF PLANS TO RESEARCH THIS TOPIC and the RANGE OF SEVERITY AND INFECTIOUS CAUSES.

Areas of investigation were very broad and discussed by experts from around the globe: neuronal antibodies, biomarkers of autoimmune dysfunction, central nervous system dysbiosis, tcell deficits, vitamin d deficiency, neurovascular dysfunction and the blood brain barrier (NAJJAR - see common threads video here ), early childhood infections (Benros - see common threads video here ) and much more.  

Several case histories were outlined and REMISSIONS CELEBRATED.

Keep an eye on these doctors. Keep in mind that PANDAS is seen as an assault on the basal ganglia and is being discussed by experts as basal ganglia encephalitis. We will keep you apprised of findings as they continue to come.

Dedicated to improving the diagnosis and treatment of children with PANDAS and PANS