A bit of back tracking -- will update the most recent developments as soon as I have a few quiet moments.
April 16, 2008
Very scary evening. To back up a little… Yesterday Xian managed to ingest a bit more protein---mostly due to me relaxing my guard a little and her increased appetite. She managed to snatch some extra cookies, some crispy chicken skin and who knows what else over the course of the day (I suspect she managed to snatch a chunk of chicken). Enough over the course of the day to give her sporadic screaming fits. One happened just as I was talking on the phone to the metabolic dietitian---she has recommended buying some special formula to add to her food that will provide more calories and make Xian feel more full, which will probably help with the 'sneaking food' situation. After our day, I was careful about Xian’s dinner and measured her portions so she wouldn’t get more than 5 grams of protein, but I have to wonder if she still had something in her system and I'm pretty sure she managed to scarf a couple of cookies while I was getting things organized for bedtime. I put Rachel to bed and was hoping Xian might also crash a bit earlier, like she had the day before. She seemed tired, but around quarter to nine she started having yelling outbursts, and I took her into the other bedroom. She had a few rounds of yelling/screaming/irritiability alternating with calming down and being a bit more coherent, but still seemed fairly responsive to attempts to calm and distract her, so we moved downstairs. Soon, it became obvious she was moving into a full tilt episode---one of the worst she’s experienced. It went on for a full hour, and the whole time she was screaming, “MOMMY, MOMMY, MAKE IT STOP! TURN IT OFF! I’M SORRY, I’M SORRY!” and pounding at her head, arching her back and seeming to be enduring something going through her little body. At one point she also was yelling for me to get a magic key---I sure wish we had one that could have turned it off. She kept trying to throw herself off the couch or the bed (I moved her downstairs when there was a bit of a lull, silly me thought it might be over). She was beet red, her heart racing and screaming nonstop for over an hour at a level of intensity even I haven't seen yet. If I could have, this time I would have called for an ambulance, it was that bad---but I couldn’t safely release my grip to get to the phone without her injuring herself.
In the morning she had another one---after only a few slices of fruit. She's very rarely had episodes in the mornings before much food is in her---can't figure out quite why it would happen, maybe still related to the previous day's event? It wasn't as severe as the evening one--the screaming was as intense, but she wasn't really trying to hit at herself or move around much so I called the pediatrician’s on-call doctor since the clinic was still closed and the doctor recommended taking her to Emergency. Tried to get the three of us ready---but we couldn’t actually leave until after her episode was over. She had a very little one while in the waiting room (we waited from 10 am until 4pm for her to be seen—a long day in the waiting room. Rachel was with us until my cousin collected her at around 3). Of course, though, she was fairly food deprived, so no big events once we were in the peds emerg. I’m praying this doesn’t turn out like taking your car in when it’s been making a funny sound and the garage --- with the episodes at home being so overwhelming, we really need to have some medical folks observe and run some tests while she’s having one. I’d rather not be in hospital—especially with how hard it is on Rachel (she’s overnight at my cousin’s for the first time---and we’re trying to see if my mom can come out, at least for a few days). Hopefully we won’t be here for long, as I don’t have much confidence that they’ll actually sort anything out further here, we ended up here more out of desperation with the back to back severe episodes. After the two big episodes, Xian’s in a deeper state of confusion---when the pediatric nurse asked her who I was, she said, “Uncle Bill” though she did get “Mommy” after a couple of repeat questions. (“Uncle Bill” is my own uncle—on the near side of eighty!) They’ve said to feed her anything, but I know that pushing lots of protein will have a pretty bad effect, so will do what I can to keep things on the low side and try to time her episodes. That’s worked effectively in the past when I was just figuring things out and wanted to have a couple of the social workers witness what was going on so she’d get some respite funding support. Wish us luck---we really need all the help we can get so as not to get a bunch of doctors all saying, “Well we can’t figure out what’s going on so it must be psychiatric.” And yes, early in our dealings with the hospital resident who has worked with Xian’s pediatrician we’ve already been getting that line of thought. I think it’s much like where they went with autism, way back in December. The resident asked if I’d consider play therapy---um, hmmm, can’t quite see how that would help with those “Linda Blair” episodes. These days, Xian’s not doing much talking and little playing, though she’s made some gradual improvements from her big decline in February. (But hey, if someone wants to come in and try it I certainly wouldn’t object, especially given the fact that Xian’s received nothing in the way of any sort of therapy or intervention yet.)