There’s a really good chance that when someone mentions PANDAS the first image that comes to mind is of cuddly black and white mammals. The image on my mind at the moment however is of an acronym that has unfolded into an incredible story playing out at Boston Children’s Hospital. I first came across PANDAS as the acronym for Pediatric Autoimmune Neuropsychiatric Disorders through a book called Saving Sammy. I co-authored an article several years ago with Dr. Carole Hong on Visual Factors in Childhood Behavioral Disorders (also available on visionhelp.com) in which we referenced the condition.
The story that is unfolding at Boston’s Children is chronicled in a recent article in the Boston Globe Magazine that you can read here. Equally informative are the Letters written to the magazine following the article’s appearance, and you can read those here.
I suspect the story is going to resonate with you because Beth is a mother, an attorney, and a one person dynamo who is at the center of a concerted effort to buck the medical establishment. It is mindful of Robin Benoit’s efforts through Jillian’s Story, and Janet Hughes’ efforts through Vision First Foundation, but on the grand scale of life and death. There may be lessons to be learned here regarding the determination of one individual to catalyze a vocal support network for parents resolved to make a difference regarding input to medical decision making.