I am a mother of a child that had “classic” PANDAS symptoms during a time when there was very little know of the Pediatric Autoimmune Neuropsychiatric Disorder Associated w/ Strep. I am a registered nurse, mother of three (my youngest, Laura, having PANDAS) and I can vividly remember the perplexing nursery school illness ( later diagnosed as strep) that “set her up” for the PANDAS onset Storm – we experienced approximately 6 months later.
Desperate, my research at the local library helped me find “Is it “Just a PHASE?” by SWEDO & LEONARD – The chapter on PANDAS was validation to me that I WAS NOT CRAZY because by then I thought I was. We went to pediatrician (again) and I begged/demanded a strep test on her slightly red throat which came back positive! Her PANDAS onset was shortly after her 3rd birthday. We dealt with PANDAS on and off throughout her elementary school years and even today it is very difficult to think of the dark days and difficult weeks this perplexing disorder robbed her and our family of.
Laura, is NOW 19 years old.
I am happy to report, Laura is currently in her second year of college, living on campus, at a 4 year University (3 ½ hours away from home). She experiencing and enjoying everything that any 19 year old college student would. High school years were a blast, proms, socials, cheerleading, driver’s license, retreats and college visits. She also dealt appropriately with the high school “Drama” that comes with being a teen. I knew by middle school we were coming out of the woods as she began to enjoy sleepovers, going to birthday parties, even vacationing away from home with a friend.
Ten years prior, my only hopes and prayers were that she would be able to have a healthy life with peace of mind.
If this gives hope or strength to one parent – My objective has been met.
*photo provided by flickr creative commons by Stan