Monday, July 14, 2008

Getting the 'zombie' out

I've been participating in a Canadian Lyme chat group where there's a group of parents who've had kids recover from Lyme and one of them commented that it was like watching the zombie leave her child. Well, Xian's zombie does seem to be losing its hold little by little. She's now having some very good moments every day---interacting with Rachel in the bathtub, interested in what's going around her and returning to old habits. This morning when we dropped off Rachel at daycare they still had some 'breakfast snack' out and she told the daycare worker she wanted some too and and then went off with Rachel and the worker to wash her hands. She gave Rachel a big hug when we were leaving (her 'old' pattern and something that hasn't happened for months) and she was also watching some of the activities very keenly, I think if we'd stayed longer she would have joined in. Her communication is gradually changing--she's now starting to add the right pronoun instead of echoing exactly what's said to her. She's still having trouble coming up with nouns, but that's improving little by little. (Today she saw a picture of herself holding a popsicle and then asked for a popsicle by name.) Apparently the 'word finding' problem is quite typical of Lyme. The new thing she's been doing is growling/roaring when she's upset/angry/frustrated or feeling discomfort/pain, so am trying to get her to use her words, but it does beat screaming at least. And, growling is somewhat 'old Xian'---when we went to China and she met her sister, when Rachel would try to whack at her she would growl at her to get her to keep her distance. (R. was a bit territorial about her stuff, food, and I guess she figured it was safer to whack someone who was the smallest of the bigger people!) I've changed around the order of her medications, since one is supposed to be taken on an empty stomach and the other on a full stomach and she's always hungry first thing in the morning now---so trying the mepron first, then giving her the azithromycin a few hours later. The mepron definitely makes her roar---I suspected it was the thing making her feel awful in the mornings....well, now it's confirmed. Her pm dose is less and doesn't seem to have quite the same reaction. I've heard from a few parents that it's the 'nasty' one--some kids will refuse to take it if they detect the taste, which fortunately isn't yet a problem. (At $1000 a bottle spitting it out would be a bit of a tragedy!)

Am trying to gather up some info to approach Xian's pediatrician---also sent another message to her psychiatrist (basically communicating the continued improvements and hoping that someone locally will treat her), and have also emailed the retired BC doctor who has been working with practicing doctors on treatment plans.

Xian's funny rash has pretty much disappeared, though what's interesting is the little round spots have flattened into the kind of streaks that she's had since early in the new year---so it does seem like it was a bartonella rash (another of the coinfections suspected).


Louise said...

It is so refreshing and uplifting to read of Xian's continued improvement.As well, it sounds as though you have networked yourself well with others who have experienced Lyme. Girl.....$1000 a bottle???OH my word...thank goodness Xian will take her meds.It sounds very promising that Rachel will get her sister back. YAY!!!

marciakrull said...

Hello Linda!
I am member of the SWT Board who has been so very worried for your family; you have been in my prayers!!
And now---each post from you holds more and more hopefulness and reassurance that you are certainly moving forward in the right direction toward Xian's treatment and recovery.
It is entirely because of your fierce Mother's love, and the amazing determination and perseverance that has goes with it, that you have come to this hope-filled and positive point. It is an honor and a huge learning experience for me to be witness to it all!
Blessings to you and Xian and Rachel.
Marcia K from Wisconsin
Happy Happy Mommy to Sara Marina (now age 5) and Kate (age 2 1/2), both adopted from Taraz, Kazakhstan