This page provides links to web sites, blogs, forums, and more resources that will be helpful during your PANDAS/PANS journey. With this information, you can learn how to best care for and recover your PANDAS/PANS child.
PANDAS/PANS Advocacy & Support: A non profit organization that is focused on building public awareness of Pediatric Autoimmune Neuropsychiatric Disorders and providing support to families struggling with the medical, educational, social-emotional, and financial hardships of these disorders. The organization distributes grants to families twice per year.
PANDAS Physicians Network: The PANDAS Physicians Network (“PPN”) is an organization that is dedicated to helping medical professionals better understand PANDAS/PANS through real-time information and networking.
New England PANDAS/PANS Parents Association: A group of parent and medical volunteers from various states across New England focused on raising awareness of Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections (PANDAS) and Pediatric Acute-onset Neuropsychiatric Syndrome (PANS). They strive to support the medical community and caregivers in their efforts to heal and take care of children with PANS/PANDAS.
Midwest PANDAS/PANS Parent Association: An organization of families and professionals dedicated to spreading the awareness of specific autoimmune disorders in children that trigger devastating neuropsychiatric symptoms.
PACE Foundation: A national non-profit patient organization dedicated to improving the diagnosis, treatment and quality of life of persons with Pediatric Autoimmune Neurological Disorders through advocacy, education and research.
WebPediatrics.com: Terrific information from a Chicago-based pediatrician/PANDAS Specialist, Dr. Miroslav Kovacevic.
National Institute of Mental Health: PANDAS info from NIMH, whose mission is to transform the understanding and treatment of mental illnesses through basic and clinical research, paving the way for prevention, recovery, and cure. Dr. Susan Swedo is currently Chief Pediatrics & Developmental Neuroscience Branch at the NIMH, and she helped discover PANDAS in a published paper in 1998.
PANDAS Network: An organization that is dedicated to improving the diagnosis and treatment of children with PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections).
Other PANDAS/PANS Blogs/Sites/Books
PANS Life: A PANDAS blog written by a mother and teacher, Lisa, chronicling her son’s recovery from PANDAS and Lyme
StrepMonster: A compelling campaign that shows what a Monster Strep can be and links to some PANDAS web sites, archived Radio PANDAS podcast recordings, and also links many helpful PANDAS YouTube videos.
Saving Sammy: The web site of Beth Alison Maloney, author of “Saving Sammy: A Mother’s Fight to Cure Her Son’s OCD” and the book “Childhood Interrupted: The Complete Guide to PANDAS and PANS
PANDAS and PANS in School Settings by Patrica Rice Doran: This book is a handbook for educators. It tells the stories of families who have searched for diagnosis and shares critical information about medical and educational interventions.
PANS, CANS, and Automobiles by Jamie Caldelaria Greene: A Comprehensive Reference Guide for Helping Students with PANDAS and PANS. The book provides practical tools for providers and families.
Joshua’s Missing Peace by Lori Suthar: Driven to help other families avoid the needless suffering, Lori Suthar chronicles the details of her son’s two-year nightmare of PANDAS.
Out of the Fog – Into the Light by Elizabeth Ann Eberhardt: This book tells the story of a family’s fight against PANDAS and offers a unique perspective on the healing possibilities of natural medicine.
My Kid Is Not Crazy – a PANS/PANDAS Documentary: This film tracks the journey of PANDAS/PANS children, their families, and the medical professionals who treat them. (Planned release in 2017.)
Other Helpful Sites
Moleculera Labs: this group serves to provide scientific evidence for patients with neuropsychiatric disorders. This site gives an overview of the lab’s Cunningham Panel testing. Access JCAP Journal special edition PANDAS/PANS articles here.
ACN/Latitudes Forum: an important forum that allows the sharing of information on certain topics, including PANDAS/PANS
International OCD Foundation: OCD is a trademark symptom of PANDAS…helpful resources about this condition from experts/professionals. PANDAS/PANS is included on the web site.