On Wednesday Xian escaped one hospital to go to a follow up neurology visit back at the other hospital. Good appointment and I think the neuro may be on to something. While she can’t say she knows what is the actual cause of Xian’s whole constellation of symptoms, she asked a lot of questions about Xian’s ‘episodes’. For example, does she get pale before they begin (yes), does she have more auditory sensitivity and sensitivity to light before they start (yes), does it look like she’s having pain in her head/headache of some sort (yes), and more along those lines. She thinks it’s quite possible that Xian has been having severe migraines, and their severity may be what is causing the extreme crying/raging, and the visual auras that can precede a migraine may be the cause of all the things she does with her eyes before an episode begins (she will press her eyes in, blink, or sometimes even laugh or seem to be watching something in a glazed fashion) as well as part of what she tends to 'see' and talk about during such events. Her trouble with language and coordination in the half hour or so before an episode also fits with migraines. Earlier on, when Xian was having the laughing episodes more often than the raging ones, she would find great comfort standing in a shower with water beating down on her head. From about mid January until a few weeks ago, as well, Xian hated to be touched on her head at any time. (Now Xian does have times when she wants her head rubbed or doesn't mind things like hair brushing etc., so I have to wonder if she had a huge headache all of the time and now she's having a bit more relief but still having some bad periods.) The neuro's recommendation was to try vitamin B2 (riboflavin) for a few months and see if it makes a difference, as apparently it has a positive effect on migraines (and bonus, she even provided the adult dosage for me---I get them, though mine tend to be more aura and more of a dysfunctional headache than the blinding pain types.). So, I've ordered some for her (weirdly, B2 seems not to be stocked by most pharmacies). While I was there I snagged one of the health fliers on migraine---and found this interesting bit in relation to foods known to cause migraine: cured and processed meats (hot dogs and cold cuts), processed cheeses, chocolate, food additives, and more. Well, funny thing, Xian’s had reactions to the foods that are the top offenders (well, except for alcohol, since I don't let her have martinis!). It’s the first theory that someone has presented in terms of Xian’s episodes that seems to make pretty good sense. She’s never been able to express pain or discomfort very well---something I am sure comes from her orphanage days. Of course, no one knows what the larger cause of everything is, and the neurologist admitted that there could be a number of things going on, and that she didn’t believe it was wise to eliminate any possible medical cause that hasn't been entirely ruled out. I've also been wondering lately whether Xian hasn't suffered some sort of brain trauma that she's now starting to recover from. The very good part of the appointment was that the neuro agreed that Xian is making great improvements in physical coordination and that she’s much better than she was in December, whatever has been causing things, and her comment was, “Well, whatever you are doing with her, keep it up, something seems to be working.” So that was nice---after having many others treat me like I’m the crazy woman. Oh, and she also said that whatever is going on really doesn’t show any signs of something seizure related, and that we need not return to see her unless there are significant changes. So one less appointment on our books.
I'm still processing our week and a half in psychiatry and will be posting something about that soon. I will, however, be taking her home on Tuesday against their wishes (we'll go back on Monday for the fructose challenge and stay the night), so that will give you a few clues as to our time there. Bottom line is that it's not a place for a five year old, or at least this five year old.