Thought I'd update. After playing telephone tag with the nurse in the pediatrician's office I managed to have a couple of conversations with her yesterday. While we can't get an appointment sooner (Xian's next one is not until early June), the pediatrician has agreed to a referral to the Toronto Infectious Diseases doctor. He's currently one of very very few doctors openly treating Lyme disease, including some pediatric cases.
I'd asked for a referral way back in early September and was told she'd do it only if we didn't have any luck with Alberta infectious disease -- I guess the new pediatric guidelines would be a strong confirmation of that. Hoping that we can get the referral soon, or at least in a month or two.
We've also had some great support from the CanLyme people, who've used our recent turn of events to begin a letter writing campaign regarding the new pediatric guidelines. The response that they received from Harvey Artsob who runs the Canadian National Infectious Diseases Lab was very supportive. (The Lab has moved along in recognition of the disease.) CanLyme is also trying to get a letter writing campaign going to MPs and MLAs. Of course it is not all for Xian, but her story reminds everyone that no child has any guarantee to diagnosis, treatment, and recovery from Lyme disease in Canada as things stand.
The good part about a referral to the Toronto doctor is that it would probably mean I'd be able to claim our medical expenses and get some reimbursement, which is not possible in terms of the "unrecognized" Seattle treatment. At this point, with Xian's doctor's refusal to represcribe one of the medications, we'd now have to stay in Seattle longer in order to get it compounded there---it's not something the pharmacies usually have on hand. (Today I'm picking up the one prescription the doctor agreed to here -- and even with a really good compounding pharmacy, it has been a five day process.)
The teacher and director of Xian's school, who are of course aware of how Xian has progressed and how ill she was still in September, now seem to have a very good understanding of the h**ll we go through in terms of getting treatment, any official recognition, and any services for her. Thankfully, the director was a former high level education ministry office and has been able to strong arm a few things---I've been asking for a speech and language assessment since early fall and it looks like that is going to happen. I've been recently thinking about school placements for next year---there could be some options that would be more convenient in terms of child care etc., but I am now thinking that with the school so much on our side, it would be a shame to have to start new. In our situation, having someone who actually 'gets it' and who can make some things happen for Xian is a resource that we need to hang on to. Xian's also going to have some repeat cognitive testing at the Glenrose Rehab hospital---the ed psychologist who is there is also very much onside (and she's from Manitoba and knows that Lyme is growing in Canada).
So...hopefully our crisis will be averted, which helps. It's been a couple of rough weeks for us generally---Rachel's had a bad cold (and I'm hoping won't end up with her usual eye and sinus infections if we can avoid it), I'm succumbing to one, and Xian has been not feeling very well herself over the past week. Not sure if she's also fighting the cold or if it's Lyme related, though I suspect the latter as she's had her weird skin rashes return and she's been complaining of more muscle pain. This morning she said her chest was sore, so will keep a close eye on that one. And of course I'm in the post-midterm madness of exams to grade and the end of semester to get through---always a little insane even when I didn't have any children!
Oh, and if you have time --- the discussion on the Oprah forum now includes over 900 posts. Many stories not that different from ours. http://tinyurl.com/bqo8vo
There was a message sent out to send a message to Oprah's link to requesting a show/being a guest -- so I did, including a link to Xian's blog, if they want more details. (And I mentioned all the horrific video I have of when Xian used to have hallucinations and screaming episodes, laughing fits, and catatonic episodes. Not that those are something I would really want to share with the world, but I figure if it means something changes and other kids avoid suffering, it would be worth it.)
Not sure if anyone here watches Little People, Big World -- I had insomnia the other night and happened to turn it on, only to see the family joking about a tick on one of the kids. They burned it, squashed it, and then squeezed it off leaving the head embedded before one of the kids picked it out. Of course, that's exactly what NOT to do if a tick is infected with Lyme -- they would have pretty much guaranteed infection. I know some folks are writing to the producers -- hopefully someone will get the message and hopefully someone will get that poor kid on antibiotics now.