Friday, February 27, 2009

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:
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.