Share your journey with PAN/PANDAS diagnosis

The year of 2020 I went to disney and on the roller coaster everest I fell unconsciousness when I woke up I had no idea where I was I started having many seizures and headaches my mom is much better at telling the tale because I can't remember most of it. I started IVIG and have it monthly. Right now I am at a steady sick baseline but have started having severe stomach pain.

PANDAS stories can never be summed up in one paragraph, but I can try! In 2nd grade I got strep throat (totally mild). Ever since then I’d have extreme anxiety and panic attacks. Never put the connection together and that was all for awhile. In middle school I got strep throat again. I started to experience depression symptoms, but didn’t realize that until my first year in high school where I suddenly could not go to school anymore. A psychiatrist diagnosed me with GAD and Major Depressive Disorder. Over the course of 3.5 years I tried about 16 different psych meds at some point (ssri’s, stimulants, Wellbutrin, a mood stabilizer etc). None of these worked for long if not made me worse without my knowledge. Finally, I went to a therapeutic school my (2nd) junior year of high school. They knew about PANDAS and referred me to a doctor who specialized in it. Not only did I have PANDAS and PANS, I had the inflammation of an 80yr old and it almost turned into a full autoimmune disorder where I may not have recovered. I was out on Keflex, doxycycline, and naproxen and in 3 months I FINALLY got some relief. After 6 months I got off my psych meds and continued to get better from there. I’m still being treated (3 years later) and aside from flare ups I’m doing good!!

I was diagnosed at John Hopkins when I was a kid,(2nd grade) although the doctors couldn’t be 100% sure if it was PANDAS or just Tourette’s. I moved across the country and got strep on my skin within the same week. They said both things could have triggered either PANDAS or Tourette’s but since they happened at the same time, they weren’t sure which. However as I’ve gotten older we’re pretty sure it’s PANDAS. As for treatment, my parents immediately put me in yoga as per recommendation from the doctors and idk if it was some miracle or something but it seriously seriously helped. I was also diagnosed with OCD at the same time and they told me it’s kinda hand in hand. And for that I’m currently on fluvoxomine

I'm not diagnosed yet but I'm suspecting PANS or AE. I meet the criteria and experience a good chunk of the symptoms. I don't remember exactly when my symptoms started but I know I was in middle school.