Joon is not doing as good as she was two days ago. She's still good, though. She's just not talking as much as she was that day. She mostly just says "yeah" and that's pretty much it. It seems like she tries to say "no", but just gets the N sound. The doctors said it's normal for her progress to go up and down a bunch of times over the first couple of weeks.
She's had no appetite today. She ate a good amount of breakfast, but then no lunch, and only a chicken nugget for dinner. We think it's probably due to her seizure medication. It's hard on the stomach, and so they're also giving her zantac to help out with that, but maybe it's not helping enough. I'm pretty uncomfortable with the amount of medications she's on, but it's supposed to be really short-term, so I think I can deal with it. If the doctors want to continue the meds for longer, I'll want to discuss other options.
Today the neurologists said it looks like the swelling is probably more global rather than localized to the cerebellum. So they're calling it Acute disseminated encephalomyelitis (ADEM) now instead of Cerebellitis. It's similar to Multiple Sclerosis, but it's caused by some sort of virus getting into her brain. The average recovery time is 1-6 months. 50 to 75% of cases have a full recovery, and up to 70 to 90% recover with some minor disability.
The standard treatment is to start with high doses of IV steroids, and then lower doses orally for 3-6 weeks. Also, high doses of IVIG, which is intravenous immunoglobulin, which is where they take antibodies from over 1,000 people, and mix them together, and inject them into Joon. This is supposed to be the best course of treatment, and this is what we'll be doing. I think she should have a pretty good prognosis with this treatment.
The prognosis is generally better in kids that are older, in one study, younger kids ended up with a slightly lower IQ, and behavioural problems. But the prognosis is also better in cases that present with fever, and Joon has had a fever. So I'm going to stay positive that she'll have a full and speedy recovery.