HomeUnderstanding PANDAS and PANS | A Comprehensive Resource GuidePANDAS StoriesHow PANDAS Turned a Girl’s Life Upside Down—And How She Recovered

How PANDAS Turned a Girl’s Life Upside Down—And How She Recovered

Hear Madison’s Story (age 10 at onset)

When I was ten years old, after contracting what was most likely swine flu, my life changed forever. Ask anyone who knew me at that age and they’ll tell you that I became a different person, no longer recognizable as the carefree kid I used to be. I became angry, furious at everything and everyone, all the time. The smallest inconvenience or irritation would set me off into a fit of rage: screaming, throwing things, breaking things. At my worst, I’d be launched into these fits of rage every day, multiple times a day. Throughout it all, I remember feeling detached from myself and my body, as if I was simply an observer watching myself do these things, powerless to stop it. In addition to that, my sensory processing system went haywire. Every light was too bright, every sound too loud, and even the feeling of my clothes against my skin made me want to crawl out of it entirely. 

My family brought me to so many doctors, therapists and specialists that it became difficult to keep track of all of them, let alone all the different diagnoses they gave me: OCD, ODD, ADHD and GAD, to name a few. Medications from antidepressants to antipsychotics were prescribed and then un-prescribed upon only making my symptoms worse. Unable to go to school, I missed almost a quarter of fifth grade. Months went by with no improvement, and fear began to creep up on both me and the rest of my family, the fear that I’d never be normal again. 

Hope came in the form of a link to an online article my mother stumbled across one day; the title was something like, “Study finds evidence of a link between streptococcus and OCD in children.” And down the online rabbit-hole my mother went. She found stories of parents reporting that their children’s entire personalities had flipped after getting a strep infection, with a couple of reports of the same thing happening from viral infections. The condition these children had, according to the internet, was called PANDAS syndrome: Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus. My mother also found the name of a PANDAS specialist, a neurologist only a couple of hours’ drive away. Two phone calls later, and I was on the waiting list for an appointment with her. 

A behavioral assessment by the neurologist and extensive blood work revealing an absurdly high level of strep antibodies in my blood ended up giving us a clear diagnosis—indeed, I had PANDAS. My family and I were stunned when my neurologist recommended simply treating me with antibiotics. Could the solution to my months of suffering be as straightforward as a single pill? It seemed too good to be true. But that’s exactly how it worked. Within a week of antibiotic treatment, my fits of rage subsided. A fog began to clear around my mind. I was even able to return to school. It was like a miracle. I was on and off various antibiotics for a few years after that, as I would occasionally experience flare-ups from a viral infection or if a friend at school had strep, but I never again experienced the misery that I did at ten years old.

It’s hard to believe that over a decade has passed since that period of my life. I’m now 22 years old, going into my final year of college as an Honors psychology and biology double-major on a pre-med track, in hopes of becoming a doctor. I have a 4.0 GPA and have been involved in various leadership and community service experiences at my school. I’ll be an organic chemistry tutor in the fall. I completed an Honors thesis about existential psychology, and I’m currently helping conduct research in immunology and osteology. I have a rich social life, a rigorous workout routine and a podcast I co-host with my best friends from high school. I’m thriving in a way that I never have before. And when I look back on what it was like to have PANDAS and how much I suffered in that one year of my life, it makes me even more grateful for how far I’ve come and what I have now. If and when I become a doctor, I know I will carry this experience with me, not as a burden, but as a vehicle for empathy and compassion for my future patients, along with the will to fight for them and their right to thrive in the same way that I’ve discovered I can.