No news back yet from metabolics. Xian's doing very well, however. She's had better sleep in the last week than she has for many months---and now is pretty consistently crashed by nine. (I'd still like to dial it back to 8, but I'll take 9 after midnight being the norm a month ago!) She's not had any major screaming episodes since Saturday when she had the last one, only a few small bouts of being irritable/upset and more able to get herself back in control. She's now been on the B2 and calcium/magnesium since the weekend and I think that's helping---she's not done any of the poking at her eyes/holding onto her forehead at all since the weekend. (And I'm on the adult version of the same regimen---I had a PMS migraine and it was gone in two days, so the B2 seems effective for me as well.) The harder part is finding ways to get her to eat it, especially with her still being on the fructose reduced diet. The calcium/mag goes into milk pretty well, but the B2 is bright yellow, stronger tasting and not easily hidden. Ideas welcome.....
Xian had her second afternoon at the PLAI program at the Glenrose. She was obviously happy to see the staff and the kids and even went up to the psychologist with a big 'hi'. She spoke a bit more in the group and was making some attempts to 'chime in' during a group activity---not actually speaking, but moving her mouth around. Her level of awareness of her surroundings seems to be coming back, though she still has some moments where she's foggier or can't come up with the right language. The staff noticed that her coordination was better as well as her dressing skills (well, shoe and sock removal and putting them back on after gym). After we picked up Rachel on the way back home she and Rachel started singing some goofy made up song---wild and noisy in the back seat, something that was music to my ears after Xian being silent for so many months.
I had a bit of a chat with the psychologist at the PLAI program --- I quite like her, she's funny, straight forward and seems to have good insights in her observations of the kids (we parents sit in the one way glass observation room and she explains what the staff are doing etc.). She wondered if what's happened for Xian is some sort of condition causing severe pain/discomfort (like migraines or some other underlying condition) and that's caused some sort of post-traumatic stress experience to re-emerge and make her shut down/regress. Xian did have some PST indicators when first adopted---and had severe giardia. I've noticed in the past whenever she was really sick or in pain that her pain responses have been quite different from other children. She's never been able to articulate specific pain, and it seems to affect her quite globally, so that often how I found out she was ill was that she was behaving oddly. But, she's been a pretty healthy kid, so only really had a chance to observe it in action a handful of times. The psychologist was also a bit skeptical of psychiatry's approach and was very supportive of me removing Xian.
Will post something when I hear back from metabolics.