YOU ARE NOT ALONE.

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.

See below for information on how to find a treating provider, where you can locate community support and relevant books.

Healthcare

Pacific northwest

OUTSIDE PACIFIC NORTHWEST

• Finding a competent PANDAS/PANS provider

  • For a list of medically competent PANDAS/PANS providers please email us. In order to protect providers privacy we do not post their names publicly.

  • DO NOT ASSUME YOUR PEDIATRICIAN OR FAMILY MEDICINE PROVIDER KNOWS HOW TO SCREEN, DIAGNOSE OR TREAT PANDAS/PANS. Most medical providers are not yet taught about P/P during their medical school education. Do not let their lack of knowledge or dismissive response deter you from pursuing a knowledgeable evaluation for your child. If you are referred to someone who you’ve been told is a PANDAS/PANS provider, check with us FIRST to make sure that is accurate. Unfortunately, there are some providers who are considered ‘specialists’ in our area who are truly not well versed in the diagnostic and treatment guidelines.

  • Alternatively, use the Northwest PANDAS/PANS Parents 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

• Arkansas

  • Childhood Postinfectious Autoimmune Encephalopathy (CPAE) 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

• New Hampshire

  • PING (Psychiatry, Immunology and Neurology Group)

Connection and support

Social Media: a plethora of support and information

• Facebook NWPPN Public Page (Public facing page for our local nonprofit)

• Facebook Northwest PANDAS/PANS Parents/Caregivers (Local nonprofit support group for Oregon, Washington and Idaho)

• PANDAS & PANS Advocacy in Schools (Group for school related supports such as IEPs, 504s, etc.)

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

• Tacoma, WA

• Seattle, WA

• Virtual

Books

• What Happened To My Child by Heather Korbmacher

• Saving Sammy: A Mother’s Fight to Cure Her Son’s OCD by Beth Alison Maloney

• PANDAS and PANS in School Setting by Patricia Rice Doran

• In A Pickle Over PANDAS by Melanie S. Weiss (for children)