Wednesday, September 17, 2008

Little by Little...

Is how Rachel talks about Xian getting better. However, since she started the antibiotic to hit the Bartonella, she's made a few 'bigger' improvements. Last week sometime her short term memory started coming back and now she is able to remember (most of the time) the names of her teachers---both old and new, and events that happen to her during the day. A funny thing happened a few days daycare one of her old teachers is named Alison, but when Xian was in her class she used to call her "Annie"---I'm not quite sure how it happened, some sort of imaginary play name that just sort of 'stuck' and then it was Xian's special name for her. As Xian was going to sleep she was telling me about something that happened with 'Annie' and I was thinking she must be talking about one of the kids in her new school. Well, Alison mentioned to me yesterday that Xian was calling her 'Annie' again...something she hadn't done since probably early last fall just before she really lost her language. Xian's also been talking a lot about the children who were her good friends in daycare last summer (and who moved last fall). Sort of like her 'old memories' end just as she was getting sicker. Her speech is really improving---she's no longer slurring words together and most of what she says is understandable now, getting closer to her pre-illness speech. She's slowly losing the impulsiveness and hyperactivity, though still seems to need to test out 'consequences' to her actions. (Yup, like this morning inserting beads into her nose---I hope we got them all out as I really don't want to have to bring her into the ER for removal!) She's still having a harder time remembering sequences of things or the 'what happens next' aspects to her day, but her kindergarten had a great idea for getting her to put the activities on a sort of chart and today Xian and I took pictures of each 'school' and hopefully we'll be able to use that to help her sort out where she's going after lunch when she moves from daycare to kindergarten. While she still presents some challenges to her teachers and daycare workers they've all been commenting on the progress she's making, and it does seem that every day something gets a bit easier for her.

She hit the next 30 day mark yesterday---she had a few ups and downs over the weekend and her eyes/head has been bothering her a bit. Other than that the only real signs this time around of her herx/die off reactions have been a few mild fevers/sweats and the dreaded insomnia. However, now she's managing to stay in bed even if she's having trouble sleeping---last night she watched "Dora" in my room until she finally fell asleep. (Last month when she was having trouble sleeping she couldn't seem to stand being 'on her own' and was getting up to all sorts of antics when she wasn't sleeping.) We see Xian's pediatrician on Friday, and I now have some information about a Lyme specialist in Ontario who may agree to consult -- he's an infectious disease specialist, and one of few in the country who treats Lyme according to the ILADs guidelines. I've been in contact with a mom whose two young daughters were treated by him---they both had quite complex cases, though live in Ontario. It would be nice if we didn't have to keep travelling to Seattle---as much as the specialist there has helped, the travel is not easy, especially when there's also Rachel to consider.

Rachel's finally getting over her cold, and has been enjoying the great weather and all the opportunities to play outside with her daycare buddies.

And I'm finally getting around to accomplishing a few of the things on 'the big list' of all the stuff that went to the back burner when Xian was so sick---dentist appointment, car maintenance and this afternoon I'm getting my hair cut. Even the house is starting to get clean and a bit more organized.

Will try to report back after Xian's appointment on Friday.

Friday, September 5, 2008

Off to School

Xian's had a very busy week, especially compared to hanging around home with me. She started kindergarten and also is now starting to attend daycare. All things considering, it's going pretty well and she is really happy to be back in her old daycare room with many old friends. Her long term memories are still there and she's picking up on routines from a year ago. Kindergarten is a bigger adjustment, with many new people and in a new space, though she has been enjoying that too. The hardest part is the transition between programs after lunch, and that will probably take us a few weeks to work out all the kinks. Her speech continues to improve, so that's helping a lot. She's still having some short term memory lapses and we're still dealing with some of the 'brain glitches' like impulsiveness or getting very over excited at times. Sometimes she'll get herself very wound up and not be able to calm herself down again so we still have some 'whirling dervish' moments. A few people who know her 'from before' have commented that she's looking a lot more like her old self, and I think she is....there are some moments where she does seem to be moving closer and closer to the child she used to be. While she's still not always acting properly with other children, she does seem to be regaining her sense of empathy. This morning Rachel woke up with a bad nosebleed and Xian did her best to try to comfort R. She still has some moments when she just doesn't seem to be able to stop herself from being too rough, but I think her awareness of others is starting to come back.

Xian will be starting on her third antibiotic (for the bartonella) this weekend, and now Nystatin to prevent yeast overgrowth, needed because she's on so many antibiotics. I'm hoping that she'll tolerate it okay---the doctor warned she may have another die off period after starting it, so she'll be starting with half doses for the first week. Hopefully I'll have some idea over the weekend---she'll have her first dose later today. She's also on some supplements/vitamins to help with her irritability/mood swings--and those do seem to help calm her down. (Hmmm, have to try some of them myself!) During the time she's been in kindy/child care I've been mostly running around trying to get various long overdue errands done, and complete my annual report for work, and hoping to book a few long over due appointments soon. Rachel has been happy to be back at daycare with her teachers back from their summer holidays---and to see her familiar playmates again. Unfortunately she's already got the 'back to school' cold---and I'm fighting it off as well. Hopefully Xian won't succumb, given all the bacterial and protozoal battles going on in her body. I can't imagine a cold virus would have much room to get a foothold.

Nice for all of us to be starting into a bit more of a routine---once I see how the next few weeks unfold I'll probably be able to set an earlier 'back to work' date, though I think I need a bit of recuperation time and time to catch up on everything that's piled up at home first.

Tuesday, September 2, 2008


Just a quick 'fly by' post. We're back after 10 days in BC and a visit to the Lyme specialist and also recovering from a couple of pretty bad weeks. Xian had a particularly bad bacterial 'die off' period that also coincided with her developing extreme hyperactivity/impulsiveness. (The Lyme specialist figures those symptoms are signs that her brain is recovering, and it is easing off gradually). The good piece is that her speech is coming back, although not quite how I'd anticipated. Not sure why, but I just figured it would 'come back' since she did maintain the one and two word sentences. Her speech is a bit like a stroke victim--a bit slurred at times and with what sounds sort of like an accent, using different stresses on words than she used to. She's asking, "What's ___ mean?" or "What's that?" and even the occasional why question. She's also been talking about longer term memories quite a lot, sometimes it's surprising what she comes out with. In Victoria she said she had a very bad dream---she mentioned "the chalk dream" (the name of a particularly bad nightmare she had when she was four) and has also spoken about some of the details from the original dream. But, what she seems to be trying to say is that this whole experiences is one big "Chalk dream" with Rachel and I in it, and other familiar people. So, maybe she does have a sort of memory of everything that's gone on, but is fitting it into a 'nightmare' category.

The Lyme doctor was quite impressed with Xian's recovery and seems to think that she's on the verge of a big leap forward (crossing fingers). She does think that she also has another coinfection, bartonella, which would explain the strange rashes she's had since early in her illness, and apparently is also a cause of mood swings, rages, and the sort of emotional/behavioural symptoms she's had. So, we'll add one more medication for a month, to the regimen, plus Nystatin to help deal with possible yeast growth with all the antibiotics.

Xian's attending her first day of kindergarten---and was quite happy to push me out the door (a ritual we used to use to help get her to separate when she was little, in daycare). Tomorrow she's starting daycare for a few hours, but no kindy as they are doing gradual entry with half the group attending the first two days. Crossing fingers all has gone well.