The most important thing is for you to know YOU ARE NOT ALONE. There are many of us who have healed our children or are continuing to heal our children. If you are new to this, some of the best advice we have received when first beginning this journey is to prepare yourself for a marathon.

You can do this.

Connection and support

Social Media: a plethora of support and information

• Facebook NWPPN (local northwest news, developments, events)

• Facebook Oregon PANDAS/PANS Parents (support group)

• Facebook PANDAS Network (national PANDAS nonprofit)

• Facebook Parents of Kids with PANDAS/PITAND/PANS (support group)

• Facebook Parents IVIG information sharing (support group)

Partner Websites: information on definitions, symptoms, testing and treatment

• PANDAS Network (National PANDAS organization)

• Pandas Physician Network (Treatment Guidelines-especially helpful if your provider is willing to treat but unaware of where to begin.)

• Moleculara (Cunningham test-PANDAS/PANS lab test that can assist providers with making the diagnosis)

• International OCD Foundation (National OCD Organization)

• OCD Oregon (Local affiliate of International OCD Foundation)

Healthcare

Pacific northwest

OUTSIDE PACIFIC NORTHWEST

• PANDAS/PANS Providers

  • For a list of local providers treating PANDAS/PANS, please email us. In order to protect providers privacy we have chosen at this time to not display their names on our website without their prior approval.  

  • Alternatively, use the Oregon Facebook group or the Parents of PANDAS/PANS Facebook group to obtain parent feedback on current providers in our region.

• Emergency Care/Hospitals-we are working at this time to identify hospitals and emergency rooms that are sensitive to, and knowledgeable of or able to treat PANDAS/PANS. Many families have reported unsatisfactory experiences at local Emergency Rooms for their PANDAS/PANS children. However, if your situation is a life-threatening emergency for you or your child, please call 911 or seek help at your nearest Emergency Room.

• Arizona

  • Children’s Postinfectious Autoimmune Encephalopathy Center

• California

  • Stanford PANS Care Clinic (must live within 90 mile radius required)

• Florida

  • Rothman Center for Pediatric Neuropsychiatry

• Massachusetts

  • Massachusetts General Hospital OCD & Related Disorders Program

Research

• National Institute of Mental Health

  • Information about PANS/PANDAS

  • PANDAS-Questions and Answers