It is said that on average families see 8 providers and spend three years seeking an accurate diagnosis before they stumble upon PANDAS/PANS. We want to change that.
PRAI is not naive to the fact that physicians are challenged like never before. They have limited time and resources.
We understand PANDAS/PANS is not always a cut and dry diagnosis; that it is one of exclusion; a clinical diagnosis based on symptoms, ruling out other neurological disorders. It is a complex medical issue that takes time and patience to maneuver through which can be a challenge for today’s busy physicians.
We are so fortunate that leading experts have paved the way so practitioners unfamiliar with the disorder may recognize the symptoms earlier, leading to faster treatment. We are not medical experts; we are connectors. We want to connect willing providers with those physicians who have worked with patients first-hand and who can help lessen the learning curve so our children’s doctors may diagnose and treat appropriately, or refer patients out to someone who can.
Fortunately, specialists from the top academic medical institutions in the United States who have worked with, treated, or studied PANDAS patients or aspects of the disorder have come together to educate and serve.
According to Dr. Sue Swedo who serves as the Chief Pediatrics & Developmental Neuroscience Branch at the NIMH, if PANDAS/PANS is caught early, treatment can be as simple as a long course of antibiotics. However, if left untreated, it can take years of invasive immune therapies to heal the child, or worse, leave permanent damage to the brain.
Understanding this disorder and having the ability to quickly recognize symptoms and treatment options will lead to improved outcomes for these children. To this end, we want to connect you with experienced physicians knowledgeable in PANS/PANDAS diagnosis and treatment who are willing to share the latest medical research.
Fortunately, specialists from the top academic medical institutions in the United States who have worked with, treated, or studied PANDAS patients or aspects of the disorder have come together to educate and serve.
The PANDAS Physicians Network (“PPN”) is an organization that is dedicated to helping medical professionals better understand PANDAS and PANS through real-time information and networking. They are here to help. And our community is so fortunate to have them.
We are also excited to announce that Richmond, Virginia is able to offer Lunch and Learn series for groups of physicians, mental health professionals, or nurses at your practice to be hosted by an experienced practitioner knowledgeable in PANS/PANDAS diagnosis and treatment. If interested, please contact Jessica Gavin.