Thursday, July 3, 2008

Progress report

Xian, Rachel and I went to the pools at the Legislature a few days ago -- as you can see, Xian's now attempting her old 'cheesy' smile. You can see, too, one of her symptoms---the clenched hands. Sometimes she has a lot of difficulty unclenching them---I suspect it's probably caused both by muscle involvement and perhaps weird sensations or pain (they also get very, very hot). But, even a couple of days later her hands seem to be 'open' more of the time.

Xian's done quite well with the Mepron. She takes it willingly---which surprises me as I'd been told that many kids will refuse it because of the taste and I'd have to hide it in something. But no, she sucks it back from the syringe and then shudders a bit. She woke up smiling this morning---happy, cheerful, more like the 'old' Xian. During her illness mornings have always been the worst point in her day---she'll often awake crying or even screaming and is normally very irritable until later in the day. While she's still a bit worse in the mornings than later in the day (apparently a big Lyme trait), she's not waking up feeling uncomfortable. Xian's showing lots of little signs of improvement---seems to be tolerating a bit more variety in foods and not having the severe reactions if she gets too much sugar (and will sometimes refuse sugary things now after she realizes it made her feel yucky), speaking a bit more and more interactively, though still struggling with language. I expect that whatever damage has been done by the infection will take some time to repair. Apparently with CNS Lyme lesions can form on the brain or spinal cord---don't think Xian has any spinal involvement (though may have earlier with the problems she had walking/moving), but probably has something going on in her brain. With Lyme, unlike other causes, they can completely resolve, so hopefully that will be the case for Xian. She is popping out with occasional full sentences that aren't repeating something we say, so things are coming along. Rachel keeps commenting on things that she sees as signs Xian's "spell" is breaking---"Xian like cuddles now," "Xian's talking is starting to work again," etc. I bet daycare is hearing some interesting things! Rachel is a bit jealous of Xian's medicine regime---though she's getting the odd vitamin just to make her happy.

Xian's sleep is improving gradually, though with our hot weather and her night sweats (will be happy to see the medication kick those away), she's had a few nights where she has trouble falling asleep. I've been giving her icepacks (or rather, frozen 'boo boo bears') to cozy up with and they do give her some relief. We're camping out on our main floor to stay cool---Xian likes the leather couch, but I usually have to mop up the puddle that forms under her by the time I'm ready for bed. (My menopausal friends say they can identify!)

Xian and I met up with a woman and her two boys who are all being treated for Lyme (they contracted it in the Kootenays in BC) yesterday. This was the woman who told us to call Dr. M in Seattle. It was helpful to hear her experiences, especially in terms of making sense of what Xian's been going through---she had the visual, auditory sensations as well as hallucinations, and could also tell me what Xian might be experiencing in her hands. She also said that she figured that we might see fairly good recovery with about 6-8 weeks, since Xian's already improving. Here's hoping!

I'm going out to see the Canadian premiere of "Under Our Skin" (a Lyme documentary of course---but who knows maybe I'll actually get out to see a movie one of these days!), a friend is coming over with her daughter to hang out with Xian and Rachel. It's hot here so expect they'll hang out in the backyard and paddle in our little pool.

1 comment:

joy said...

So glad your little girl is finally being treated for Lyme Disease. When my niece(Tiffany)told me to read your blog I knew it was LD. Even though it is under these circumstances,I was so glad that through me Tiffany was able to suggest LD. It is an absolutely devastating disease. I can identify with many of your daughters symptoms and can only hope that with time we get better and better. "Coping with Lyme Disease" 3rd edition, is an excellent book by Denise Lang. It was recommended to me by a nurse. Take Care, Joy