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 Public Page(local northwest news, developments, events)
Facebook Northwest PANDAS/PANS Parents (support group)
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)
Support Group Meetings: local gathering of parents/caregivers of children with P/P, details available via our newsletter emails and our public facing Facebook page
Portland, Typically 3rd Sunday of the month in downtown PDX
OUTSIDE PACIFIC NORTHWEST
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.
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.
Stanford PANS Care Clinic (must live within 90 mile radius required)