That sounds awful. I'm so glad she came through. Thanks for the note about ritux. Honestly, the neurologist we're dealing with hasn't had a lot of cases like this, so any more info we can get is helpful. It's been interesting to be in a position where I've become much more familiar with the literature than almost every doctor I speak with.
Although we're still in the thick of it, I also want to find ways to help others and have a few ideas. An email address (anonymous on HN) is in my profile if you'd be up for connecting.
Glad to hear your daughter is doing so much better, and it's fortunate that you're near Stanford. We're going through this right now. A little over a year ago, my then-6-year-old son caught a fever and quickly lost his mind. It felt a lot like demonic possession. He progressed from OCD to psychosis, eventually losing all of his language and academic abilities. Experiencing this as a parent has been horrifying.
To compound things, many medical providers either don't believe in or don't have experience in treating an autoimmune encephalopathy (brain inflammation) when there are no known markers for it (they've only identified around 18 antibodies for this condition, but there are likely thousands). There's also still, in the minds of many providers, an arbitrary distinction between so-called organic (i.e., coming from the organs) and psychiatric pathogenesis. (As an aside, the first comprehensive guidelines for treating PANS were published only last summer (https://home.liebertpub.com/news/revised-treatment-guideline...)
Anyway, my son has received steroids, antibiotics, IVIG, a tonsillectomy and, just this past week, plasmapheresis (to say nothing of all kinds of exotic supplements prescribed by our more fringe providers that, I think, pretty much have no effect). We've never been able to identify a specific infection at the root of this, although staph has been suspected at times. Post-plasmapheresis, he's already progressed to about 50% of his baseline. The next step will be either more plasmapheresis or rituximab.
Although we're still in the thick of it, I also want to find ways to help others and have a few ideas. An email address (anonymous on HN) is in my profile if you'd be up for connecting.