An update....

Life has been incredibly hectic for us since the beginning of January. Between my teaching schedule (which involves both an evening class and an early morning one---not so good for keeping to a sleep schedule for little ones), Seattle visits and the ups and downs of treatment, I’ll be happy to see the end of the semester.

Xian’s had two trips to Seattle to see the Lyme specialist since my last post. In early January the doctor decided to switch her back to azithromycin from amoxicillin, as the amoxi caused horrible nausea and Xian felt pretty miserable on it so it was becoming harder to tell what was medication and what was Lyme symptoms. Since Xian had responded so well to the Bactrim, it was decided to go onto an azithromycin and rifampin combination, as that has a good record for treating Bartonella, one of the coinfections that is suspected to be causing some of her symptoms. Xian’s medication for babesiosis (Mepron) was also stopped, as she’s not had any of those symptoms for quite some time (night sweats/fevers/chills/severe headaches).

I’m happy to report that the changes seem to have been a very positive move. Xian is now eating better, gaining back some of her weight, and also seems not to be as badly affected by gluten/fructose/sugar intolerance. While she’s still on a restricted diet, at least she can enjoy the occasional Timbit! She also seems to have a growing sense of what causes her to feel crummy---and while she loves to carry around a little bag of candy, or hang onto a mint for days, she’ll often not eat them. It seems that possession is enough to satisfy her and she remembers how they make her tummy feel.

Her digestive symptoms overall are much reduced, and her mood swings, which had been a big part of her illness since the very beginning, are not occurring very much. Now her outbursts or tears tend to be happening more when she’s tired or not feeling well, or when she’s having her cycle of die off, which tends to bring both physical and emotional/cognitive symptoms back.

Socially, she’s returning to the child she used to be, and now at kindergarten "pick up" it’s not unusual to see her playing with a group of girls. Not quite “running the show” like she used to, but certainly much better than even a few months ago, when I’d find her either with one of the teachers or doing something on her own and not wanting anyone to interact with her. At daycare she’s now back to being very attached to her old “best friends” and wanting to have play dates again.

Physically, she’s still having some symptoms come and go, but is much more able to articulate what is going on so it’s much easier to track what’s happening. She’s still showing some neurological ‘quirks’ that weren’t there before she was ill, and that seems to be the harder area to clear. One odd thing is that while she can orally spell her own and Rachel’s names and could properly spell her own name (Xian) in sequence when she was four, before getting ill, now she is entirely unable to remember the written sequence for either name. She always remembers her own four letters and most of Rachel’s, but the order continues to elude her. She still gets frustrated when people don’t understand what she’s trying to get at and still doesn’t sound exactly like she used to before she was ill. Her articulation is still not entirely back—whatever it was that caused the severe slurring of her speech and lack of tone in her voice seems to still be present but in minor way. She’s met with a speech and language pathologist at her school and I’ll be meeting with the SLP later next week. I’m also in the process of arranging follow up cognitive testing with the Educational psychologist who tried to assess her last summer, both to be able to make some decisions about grade one placement and services she might need, and also to have something tangible in terms of what’s been happening for her cognitively as a result of treatment.

As it turns out, this may be more important than just tracking…. We returned recently from Xian’s last Seattle appointment. The doctor is pleased with her progress, though believes that Xian may need to continue treatment for about a year although that’s a bit uncertain since we won’t know when she’ll be able to end treatment until she progresses a bit further, since she’s still having symptoms and herxheimer responses (which indicate she’s still got a bacterial load). The doctor says that in her experience and that of Dr. Jones (the Connecticut pediatrician who specializes in Lyme treatment), ending too early often results in relapse, and relapse can mean disease that is even worse than it was the first time around. While I (and Xian) would really love to leave antibiotics behind, given how sick she was, how poorly the medical profession responded to her severe illness, and the devastating impact on our lives, I’m reluctant to do anything that would risk a relapse. Unfortunately, a recent publication may have put Xian’s ongoing treatment in jeopardy, at least in terms of getting her prescriptions filled in Canada under my health plan (hundreds of dollars a month….). Canadian pediatric infectious diseases doctors, including the ID doctor who saw Xian in November have put together recent guidelines for pediatricians. This document would deny treatment and testing in cases like Xian’s. Since Xian’s had more than a month of treatment, this says she would be “cured”.
The link is at:
http://www.cps.ca/english/statements/ID/LymeDisease.htm
While up until now Xian’s pediatrician has been quite willing to rewrite the prescriptions recommended by the Seattle specialist, had agreed to a year of treatment, and in January (before the document came out) was still saying she would treat for a year and agreed that treatment for two to four months beyond the last symptoms seemed reasonable (She's prescribed for six months). Well, now she’s balking at further treatment. And rather than seeing us in person, or speaking with me, she left a message on my answering machine with the news. Still figuring out what to do….or what our options are. She did refill part of the prescriptions and we still have some left, so at least that will give me time to see if we have any options. I’m figuring it’s probably time to go to our political representatives (MLA and MP) with Xian’s story and see if they can suggest anything. It seems pretty unwise to allow Xian to become an experimental lesson in relapse for our pediatrician and local ID doctors, and you'd think that she'd have some right to treatment until she is completely well. While Xian's certainly moving closer to the end of treatment, I believe it’s a terrible gamble to end it without some sort of knowledgeable verification (e.g. from a Lyme aware doctor) that the time is right. But, I expect the pressure is on the pediatrician, and I imagine that’s due, at least in part, to the new Infectious Diseases “guidelines”, in addition to this being such an unpopular disease to treat, in terms of the Canadian medical health system.

While I'd hoped, with Xian's dramatic improvements on treatment, that things might get easier for us, it seems that I'll have another fight on my hands. While I've never looked into legal possibilities as a great solution, I'm really starting to think that may be the only way to get any sort of change happening. For Xian, if the doctor refuses further treatment it's not like we don't have other options (at least while we still have a house to sell or relatives to borrow from to finance US purchased meds and treatment), but it just seems so unfair. Criminal, really, that doctors would roll the dice with her health, knowing how entirely disabled and sick she was. We were just getting to the point where I was starting to think I might be able to plan for some parts of our lives over the next few years (a sabbatical, some travel, and even the little things the girls haven't been able to do -- things like music lessons, swimming lessons). I can't imagine being in the situation we were in when Xian was so sick, nor consciously putting her through the pain and trauma she already has experienced.

Mamma Mia, Happy Holidays!

We've had a busy couple of days -- and fortunately for us, Xian's been having a good period with very few symptoms and a bit of appetite improvement. Considering we've had lots of social events (which tend to still be a bit harder for her to deal with than 'life at home') she's done very well. Will try to post a few pictures of both girls once I have a chance to actually get both of them in one picture and where one of them isn't doing something goofy...which is what I have so far! This year's holiday is far different from Xian's last Christmas---which was mostly spent in hospital in a fog. My own recollections of last year are a bit of a blur, and I have to confess that my preparations this year definitely brought back those feelings from last year, when it was clear Xian was very ill but there were no answers. This year, though, Xian has been an active participant---she and Rachel have been in charge of our tree (a four foot silver tinsel number). Our holiday music has been a bit unusual. I finally managed to get a copy of the movie DVD "Mamma Mia"---we've had the CD and both girls love singing along in the car, well, until the CD player in the car decided to pack it up...that's on my Jan. to do list. We have the DVD that includes the 'sing along version' and both girls are keen to belt out "Mamma Mia", "Money Money" and more. (Fortunately they are mostly uninterested in the story line and haven't yet noticed the couple of curse words...though I guess it's a sign of Xian's recovery that she's now trying to 'expand her voculary' in such ways occasionally!). I'm hoping that one of these days they'll go to bed early and I can actually pay attention to the movie instead of being the musical theatre director (they prefer to sing while being videotaped).

Xian's also hit a new milestone. She actually has a bit of a real cold, with a cough and 'froggy' voice. Rachel and I have had it for a few days, and what's been typical since Xian has been sick with Lyme is that she'll look pale and seems to have something 'extra' she's dealing with, she won't actually show any typical cold/flu symptoms. From talking to other Lyme sufferers, it seems that the lack of cold symptoms happens to quite a few folks who've been more severely ill...given that Lyme messes up the immune systems, I have to wonder if it doesn't mess up the ability to mount a response to viruses. Anyway, while normally a kid with a cold won't be anything very exciting, this seems like a pretty positive indication that Xian's immune system is 'coming back'.

We're off to another dinner with relatives. It's nice to have a break from our hectic morning routine and all the school/daycare drop off/pick ups/transfers, and given all the weather/travel problems I'm very glad we decided not to go anywhere for Christmas. We do have another Seattle appointment, but not until towards the end of the holidays--hopefully by then that Pacific Northwest snow will be finished.

Happy holidays to everyone and all the best for 2009 -- I can't say I'm at all unhappy to see the end of 2008, and am hoping that 2009 sees a big remission to Xian's illness.

Long overdue....

It’s been a while since our last update. Life has been pretty busy with work—a little too much, too soon in terms of Xian’s needs. Her time on the Amoxicillin hasn’t been too much fun (she had her azithromycin switched for amoxi at the end of Oct.), as it makes her feel nauseous fairly constantly, which also has an impact in terms of getting her to eat enough and take her other medications (one needs high fats and the sulfa/Bactrim irritates the stomach). The work I was doing in November required helping with some morning classes, and that was pretty difficult---having to get food and the meds into Xian (pretty much an hour and a half process on a ‘good day’) and then half the time having to figure out whether she was feeling well enough to actually attend daycare or school. She’s definitely thinner at the moment although her appetite is slowly improving again. She’s also had on and off sleep issues as the meds have given her die off – a bit more constant this cycle, too. Not quite sure how I will manage with work in January, though I’m meeting with my boss next week before the holidays. One of our issues, especially in regards to work, is that people believe because we now know what she has and she’s getting treatment that everything is fine and 'back to normal' now---not realizing that we’re still dealing with months of meds, lots of medication side effects and cycles of bacterial die off that make her feel very ill and also give her periods where significant symptoms will return temporarily, including the neurological ones. We will likely be dealing with chronic illness until her treatment ends, but because she looks so much better than she did (and her issues aren't immediately visible) the assumption is that she's all better and I can do everything I used to be able to do.

Everything pretty much takes me twice as long as it used to in terms of work and I can’t accommodate much that’s ‘last minute’--we're also still dealing with many appointments as well as the Seattle trips every 2nd month (we're now nearing the $10,000 mark for our expenses there, with no real hope of reimbursement, although I am certainly going to try). My Christmas wish for this year is that the local medical community will finally step up to the plate in terms of Xian’s illness, and be willing to consult with a Lyme specialist directly so we won't have to keep making those trips. The really strange thing is that I was contacted directly by one of Xian's specialists to ask if I would share the contact info for her Lyme specialist for another child's family...pretty sad state of affairs when the doctors are coming to us, don't you think? Though I guess it's at least a positive move that someone is recognizing neuro Lyme symptoms and that the child may be able to at least get treatment before degenerating completely.

The good news is that cognitively Xian continues to make gains and lose symptoms, even as she’s dealing with ongoing physical discomforts. Her memory of when she was very sick is also coming back in bits and pieces and she does seem to have memories of times when she was unable to communicate, though that’s a bit frightening for her. She also is quite aware that there have been changes to her personality and she’s been talking a lot about “the Old Xian” and “the New Xian” She decided she needed her hair changed (bangs cut) to make herself look different as "The New Xian"---she doesn’t like how she appears in the pictures from last year when she was much sicker. I’ve been pushing to get some speech assessment/support at school which looks like it’s in the works---language seems to be her biggest area of frustration because she can’t get things out as easily and knows she’s not able to speak as well as she could before. She still has minor slurring/pronunciation issues, which get a bit worse when she's having bacterial die off---I’ve heard that with Lyme there can be vagus nerve issues, which would probably explain the speech, swallowing, and digestive/urinary issues she tends to experience all at the same time. They are all improving gradually, but come back often enough to remind me that she's far from finished her treatment, even while she's far ahead of where she was a month ago. Her biggest gain in the past month has been getting her drawing skills back--she's now back to spending a lot of time working on detailed and very recognizable drawings, including trying to represent pictures she sees elsewhere. (The new thing is drawing "Batman girl").

It’s strange to think that a year ago Xian was beginning her series of hospital stays….a pretty horrible time for all of us. I have to wonder what might have been if she’d been accurately diagnosed back then and it’s hard not to feel angry with a medical system that eventually simply shoved her out the door with no prospect of diagnosis or treatment, especially when earlier treatment would have made a world of difference and spared her and our family a lot of suffering.

We’re having a low key Christmas this year---mostly focusing on activities the girls want to do, and we’ll head to the coast just before the New Year and spend a few days in Vancouver to bookend the next trip to Seattle, which I am truly hoping will be the last one. While the Lyme specialist there has been essential to Xian’s recovery, travelling with the kids and with Xian often feeling crummy, dealing with meds and Xian’s diet while away, border crossings (which are always 'interesting' as a single mom of adopted kids…) etc. is pretty exhausting. The next trip, I figure, should be somewhere with a beach and activities for the girls.

Will try to post some new pictures once I get around to actually taking the ones I'll be sending with that email Xmas card.

A long overdue update

Xian’s continuing to make progress and lose symptoms. She still has her ‘bad days’ every month, but they are more and more predictable, usually hitting about a week every month unless there are new meds in the mix which seem to increase the bacterial die off.

She’s looking gradually more like the child she used to be, with her remaining illness in less 'obvious' areas. She’s now able to remember things that happened earlier in the day or week and can answer ‘or’ questions (Do you want milk or water? For months she couldn't hold two ideas in her mind at once.). But she’s still a bit more easily distracted than she used to be, and can lose her train of thought if she's interrupted, or if there's too much 'going in' at once. The hyperactivity is mostly gone and only resurfaces mildly during her herx periods or when she gets too much stimulation. At least some of the time her 'off' button seems to be working okay now. Xian’s drawing is also starting to come back in bits and pieces---she’s back to drawing flowers, objects and including exactly the same sort of detailed eyes she used to do, and doing very meticulous colouring (we brought colouring books to Seattle--the same one she used two months ago, and there is a huge difference in what she can do now). She’s also wanting to do a lot of writing--though now what she used to do in correct order is often in reversed or scrambled order, interestingly (apparently not unusual with Lyme to lose some 'sequencing' skills or do have some strange perceptual quirks). Her fine motor skills are pretty much back and now improving beyond where she used to be. In kindergarten they’ve been sewing and Xian hand stitched a little pillow and insisted on making a princess doll and actually managed to do it all by herself. The woman who has been working as her assistant said Xian was the best at sewing in the class. Quite a change from a kid who couldn’t uncurl her fingers or hold a pencil or wasn't even able to care about such things. Daycare staff have made the similar observations about her fine motor skils. She and Rachel are both pretty much back to where they were: getting into mischief together, arguing over toys and competing with each other to do everything 'faster' (well, except getting ready in the mornings). Xian’s pain responses are fully back (remember, she couldn't even feel an IV insertion...) and for the first time in many months when she fell and bonked her cheek (big bruise!) she cried very hard. (Rachel was quite alarmed at this new development and cried too. She said, “I thought she was died!!”)

We'll be finding out what medication changes she'll have soon. She's finished her round of sulfa---she was supposed to finish after a month, but we had a little extra and I extended it to go to when she has her periodic die off, because I figured it might be good to kick those spirochetes a bit harder when they are 'down'. She's had some die off symptoms this week too, so hopefully we've smacked down a few more bacteria.

I've been in contact with the CBC producer who is going to be working with me on the radio mini documentary on Xian's story and she has some interesting ideas---she's hoping we can get Xian to try to tell as much of her story as she can, and was quite interested in the fairy tale interpretation that both kids keep returning to. For Xian, I'm sure it does feel like waking up from one of those 'sleeping beauty' type bad spells. The Disney Sleeping Beauty video is out again and the girls have been watching the clips on BestofDisney on Youtube...though Xian is also quite convinced she just might be Snow White---now that she has her proper Halloween costume. Will try to get some pictures---I just hope those costumes will hold up until the big day, they are getting a lot of wear already. Xian's 'cheek bonk' happened when she was trying out those princess shoes and tripped over a box---I guess the bruise is a sign of things moving back to normal, as she used to love wearing all those dress up shoes!

"Before" and Three months of Treatment

Here are two pictures: one is a picture of Xian at the height of her illness -- she has what I've been told is a pretty classic neuro Lyme "blankness". The picture in the car was taken in September and you can see that her 'spark' is back.

Will post an update soon, but thought that these two pictures provide a pretty clear picture of the changes since Xian's started on her treatment.

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 ago...at 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.

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.