Tuesday, June 9, 2009

Almost a year....

Since Xian began treatment. And now two years since Xian was likely bitten by her tick. Even with having lived through our journey, sometimes the past two years seems simply unbelievable. The part that seems the hardest to deal with is that even with the evidence of Xian’s continued recovery from severe, debilitating illness, doctors are still not willing to name what she had, and the infectious diseases doctors still stand in the way of anyone trying to treat her. As a person who works in research myself, I find it hard to understand that there’s no one, aside from the child psychiatrist and Xian’s educators, who seems particularly interested in finding out more about what she has been going through. Mostly they just seem to want us to go away quietly. (Hah, like that’s going to happen!)

We’ve had some very good developments in the past month. Xian’s medications were switched (to amoxicillin, ceftin, with tinidazole pulsed to bust the cyst form of Lyme) and within 6 hours of her first dose of amoxi, Xian was showing some distinct improvements. She did get really sick for the first week, which I thought was a drug side effect (and I was quite worried we’d have to switch medications again), but it appears to have been a Lyme ‘die off’ reaction. Within a few days the worst of the symptoms ended and she has just continued to get better, particularly in memory, speech, and cognitive symptoms. This morning she looked at herself in the mirror and said, “My eyes are sparkling!” – and it’s true, she even looks a whole lot better and much more like her ‘old self’ before illness. What’s also been interesting is that in the past couple of weeks she’s really been trying to write and draw a lot – things that she’d not been so keen about since she started to plateau a few months ago. Also showing a lot more curiosity about things and asking more detailed questions (beyond just “why?”) – sometimes connected to what she has been learning at school.

We did end up having some success in the appointment with Xian’s child psychiatrist – who has agreed to provide treatment at least temporarily. While it’s not really her area of expertise (antibiotics) she said she cannot argue with Xian’s progress. She also told me she has tried talking to the infectious diseases doctors, but they refuse to support further treatment, even while acknowledging Xian’s progress on antibiotics. The psychiatrist is hoping we can get the pediatrician back on track or at least doing some of the prescriptions, but we’ll see. I’m not going to be taking Xian back to Seattle this summer, and am going to push hard to get treatment happening in Canada, and to get her case finally recognized. Last week I sent a letter (including photos of Xian from health through illness to now) to our MP (member of parliament) and I am hoping that we’ll get some sort of support from her.

Over the past few days there have been quite a few Canadian Lyme disease stories, based on the recent article in the Canadian Medical Association Journal

Here’s one of the news reports, based on the report:

The report says that as of 2009 ALL confirmed and suspected Canadian Lyme cases should now be reported by physicians. So, I will be working on getting Xian’s case included in the numbers, though I am also anticipating that at least some of Xian’s doctors won’t want to include her case because that would also indicate some liability in terms of her medical treatment for a year. But, we’ll see….I figure it is worth a try, and as a fellow Lyme ‘mom’ said to me recently, “Remember, this is a long haul.”

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