This is the journey of Emily, who is now 16. She began experiencing PANS symptoms in 2020 during the height of COVID-19; before that, Emily was a typical kid and did all the things that girls her age do. Emily is now a high school junior and doing well. However, her path to recovery was filled with despair and uncertainty.
Her initial diagnosis was hard to figure out, which made getting treatment challenging. The first indication of a problem was when Emily started to experience an eye blink. This tic turned into a subtle head nod, then small vocal tics, then significant vocal tics to full vocal screaming at the top of her lungs and body tics so bad she would throw plates. The tics were so bad we thought she was having seizures.
We took her to several doctors, spent several hours in ER waiting rooms, and always left without answers. It was an incredibly unsettling time. What was once a happy and healthy home turned into a grim and stressful environment. In 2020, she missed most of the school year.
We faced another setback when Emily contracted COVID-19, and we were at our lowest point. However, one positive thing that came from that was Emily revealed that she was being bullied at school, which was exacerbating her tics.
We eventually brought Emily to a naturopath, who diagnosed her with PANS, triggered by Lyme, walking pneumonia, and mycotoxins. Although We would soon realize that most mainstream doctors would not accept a diagnosis from a naturopath, they provided no diagnosis or help.
We were lucky to get an appointment with a great mainstream doctor who confirmed her diagnosis of PANS. It was then that her diagnosis was taken seriously by other doctors and the school system.
We had progress when we started healing her gut and enrolled her in a brain reintegration program. These two treatments helped us finally start to get the Emily we knew back. We were eventually able to have IVIG approved, and she continues with ongoing treatment.
Emily drew these drawings in therapy and proudly showed them to me.
She said the first drawing is like PANS/PANDAS tearing apart your brain/life and losing pieces of your life. The second one shows that you won’t get those things back but can still heal, grow, and make new memories.
She has been free from tics for two years and improves daily, with occasional reoccurrences at night or when stressed.
As Emily’s parents, we once felt sad over everything she had missed, but we eventually embraced the idea that this journey was meant to shape her into the incredible person she is today. We are thankful for all the wonderful people we have met along the way.
Gabriella True
