It was early February 2011, a Tuesday afternoon l believe. My beautiful daughter came home from K-4 kindergarten and started asking and repeating the same strange questions…Am I going to die? Am I on Santa’s naughty list?
Frankly, this was quite bizarre...and totally out of her character and out of the blue, too.
It wasn’t once or twice, it was literally every 5 minutes or so, the same two questions over and over.
….and no answer, or reassurance would put an end to the repeating loop…
….and as the day and evening wore on, it became even more and more concerning, but tragically, it was about to get worse…
Two days later the repeating questions turned into a full blown psychosis, with big dilated eyes and fearful screams. It was so intense I told my colleagues at work that I felt like I was in the Exorcist movie.
The next day we were in our doctor’s office and our perplexed and concerned pediatrician ordered a battery of tests at our renowned Children’s Hospital…we rushed our daughter to Children’s and spent the next 7 hours undergoing every pee, spit, and blood test that our Doc and the Children’s staff could dream up.
….but after the battery of tests…
The results were still inconclusive, and no one really knew what was going on with my very frightened daughter.
Unfortunately, this is “par for the course,” for PANDAS/PANS and little did I know, that it was the just the very beginning of a decade long journey for my daughter, myself, and our family through the mysterious and misunderstood world of this complex illness, involving both local pediatricians and global specialist doctor/practitioners, deploying all kinds of conventional and alternative treatments ...with many downs, but also powerful ups…much sadness & frustration, but also recovery points of immense joy & relief.
And, along the way, a serendipitous path of self-discovery & personal growth for me, and total admiration for my now high school freshman teen daughter’s resilience and courage to overcome obstacles, gradually heal, and live a full life. But a simultaneous bumpy path, too, that saw 10s of thousands of dollars in out of pocket medical costs, and at times, an incalculable toll on family life.
I’m telling these details for the first time here, to bring needed attention to PANDAS/PANS via the 2020 PANDAS/PANS awareness day..... (click below for page 2 & resources)
