We're back in Edmonton now.
Xian started on her first medication (azithromycin, an antibiotic) the night we returned from Seattle. One of the things that can happen, and indeed is a clue that treatment is 'working', is something called a 'herx reaction' or herxheimer reaction -- with spirochete bacteria, they are known to release toxins as they die off and so symptoms will often get worse before they get better. On Xian's 2nd day of medicine she began having sudden crying fits, something that's happened in periods when she's been more ill---these aren't like the food reactions, just little bouts of crying and being in pain. Yesterday (day three of azith) she had them on and off over the day, plus had a couple of laughing fits, which we haven't seen for a while, but were a key part of her symptoms in December and January. Since 'day 2' she's also been having what I'm pretty sure are hallucinations, on and off -- but the real difference on the medication is that she's been quite able to talk about what's going on and will say that she's scared, or that she sees scary things. In Victoria we went into a Chinese restaurant and they had music on---she made the usual move to plug her ears, but said, "That hurts my ears!" something that's huge for her---while we've all noticed her auditory and visual sensitivities through her actions, she's never been able to articulate anything about what's going on. Yesterday there were a few moments where she simply looked 'clearer', more focused and aware of her surroundings---hard to say exactly what it was, but just looking a bit more like the 'old Xian'. Yesterday afternoon Xian handed me a book and wanted me to read to her---one of the consequences of her illness has been that she's had no ability to focus on reading and little interest in something that used to give her pleasure--I can't even remember the last time she wanted me to read to her, she stopped being interested in books in the early fall, and while she 'tolerated' read aloud time at the PLAI program, that was often the time that she'd begin closing her eyes and doing odd visual sorts of things. I've wondered if sometimes the bright colours/contrasts in picture books made her headaches and visual symptoms worse. After one reading of Puff the Magic Dragon she wanted me to read it again, too.
Yesterday Xian also started on most of the supplements that Dr. M. is suggesting: she's on probiotics and digestive enzymes to help counteract the effects of the antibiotics, some vitamins, plus some homeopathics to address her symptoms. Probably a bit too early to tell how they are working, but she did seem to have a 'good' evening in terms of eating dinner and feeling fairly good. Sure would be nice if some of her tummy issues improve!
I'm going to try to keep track of Xian's responses/improvements etc. on the blog---figured I could keep people informed and also keep a record of what happens for any future use, whatever that might be.
A couple of people have asked about the potential course of treatment. Dr. M. said that we could be looking at about two years of treatment, but changing medications along the way to deal with coinfections, and then likely tapering into supplements and keeping an eye on symptoms to see how Xian's immune system copes with things. The mom of the Edmonton teenager treated for Lyme, said that he had some initial setbacks (probably due to Herx reactions) but that they saw big improvements in a matter of about two months, though he did need to continue antibiotic treatment for almost a year.
Xian's sleep pattern is also changing on the medication. While she's still struggling a little to fall asleep, she's now sleeping a lot longer. She crashed last night sometime after 10:30 (we're still dealing with the hour time change from BC, so not as bad as it sounds), but is still asleep this morning at 10:40. This is the first 12 hour night she's had since before her illness, aside from a couple of nights when she was medicated and had a high fever in the hospital. Now the trick will be to move the bedtime up, but that we can manage. Rachel is taking advantage of Xian's big sleep by eating fruit and chocolate---the things that are off of Xian's menu at the moment.
So, things are looking fairly optimistic. After the travel and shelling out the big bucks for medication (let's just say that Mepron, the babesia medication, is the price of liquid gold!) I wondered if we'd see any effects at all, so the past few days of seeing Xian have some reactions has been pretty darned good. When she's having a bad experience I keep telling her that her medicine is working and she needs to be brave, and it does seem to sink in. (We saw a Disney channel movie in Seattle where a Chinese teenager discovered she was a kung fu warrior princess---I missed the title, but it was a good movie, both for Xian in her current situation, and for blasting the 'compliant Asian girl' stereotypes. Will have to see if I can find it on the on-line Disney Channel schedule and report back.)
Today is also a special day for us---the anniversary of Xian's adoption four years ago. We'll try to find some way to celebrate---probably order in from our favourite Chinese restaurant, though I might forgo the cake this year (my gluten free baking skills are not quite there yet, though we might have a GF mix kicking around somewhere in the pantry). I'm sure we can stick candles in something!