Thursday, June 12, 2008
We have some positive news -- and since I got it have been too darned busy to post, what with booking flights etc. I contacted the Seattle Lyme doctor (she's a also a pediatric Lyme specialist and worked for many years in Connecticut, or 'ground zero' for Lyme). When she called me back she wanted to know why I suspected Lyme -- after giving her the summary version of the long story (I'm getting pretty good at that by now---the usual response of all Xian's specialists is normally, "That's very strange," or even to question my memory/interpretation/observations with skepticism.). Well, by the time I got to the end of it, she said that Xian's case was pretty urgent and she needed to see her as soon as possible -- we have an appointment on the 24th! (I'd heard she was booking into late July, so had sort of expected that---but sooner is much, much better.) I've also faxed a letter to the lab requesting them to send her a copy of the test results once they are available, so that's another big relief. My worry has been that a) Xian's pediatricians won't have any idea how to interpret the results and so won't give them over to me directly until they consult with someone and b) if they turn out to be at all positive they will get "infectious diseases" involved (and they've refused to treat in positive cases where the provincial test was negative) and c) if infectious diseases get involved we will first wait for an appointment, and then be required to have the ELISA test (which apparently rarely picks up Lyme in Alberta) and that test can take weeks to come back. The doctor Xian is going to see will treat based on the clinical picture, even if test results are inconclusive, and then retest. From what I am reading, Lyme can be a sneaky bacteria and go deep into muscles and organs and not be picked up in blood depending on the stage of the disease. I figure that there's really nothing to be lost from at least an initial course of treatment to see what happens, and potentially lots to be gained. (And heck, if Rachel can go on heavy antibiotics for nine months--Izoniazid--for mere exposure to TB, with no clinic signs, for a 10% of conversion to active TB, treating initially seems like a no brainer, at the very least to be able to definitely rule it out as a cause of Xian's issues!)
Have been reading about Amy Tan and Lyme disease -- as my mother has commented, her experience sounds quite similar to Xian's, only Xian's been unable to express what's going on and Amy Tan is an adult with keen communication abilities.
Oh, and remember, way back, my mention of seeing "Munchausen's by Proxy" in Xian's hospital chart. Well, this is quite interesting, especially given that the label has turned up in both Xian's chart and Ed's (Janet Sterling's son).
Yesterday the Glenrose team provided Xian with a new diagnosis (while admitting it's mostly to deal with school placement/school services and descriptive rather than diagnostic) -- "severe language and communication impairment". So, we've gone from "sensory integration disorder and neurological degenerative condition of unknown origin" to "childhood disintegration disorder/late onset autism", to "Severe behaviour disorder and suspected psychiatric/affective disorder", back to the autism diagnosis, and now this one. The Glenrose folks know I'm taking her to Seattle for treatment (hopefully that's what will be recommended!) and while I think they are still somewhat skeptical they aren't sharing that with me directly, and they do acknowledge that Xian may be in a very different condition come September. Because they've seen her improve quite a lot from their first encounter (Xian was coming off of her really big decline when they first met her), at least they acknowledge that things are still fluctuating. The frustrating part, though, is that I never get the same story around getting Xian into kindergarten -- first told, yes, Xian can attend the rehab kindergarten (but then she improved too much), then told, "try to find a school and we'll help hook you up with services, or maybe she can start at the Glenrose and transition", to now, "call the specialized placement schools and bring a list to our meeting next week". Um, yeah -- right now I'm scrambling to get our travel plans confirmed etc., and we have the usual series of appointments before then (Xian's urologist, Rachel's audiology and limb difference group)---do you think they might have possibly given me the brochure a month ago? In this province, K isn't mandated, which also complicates matters---basically no one really cares if she doesn't have a placement for September! So much for living in the 'wealthy' province.... I did mention to the SLP that since nothing at all is confirmed for Xian in terms of services and programing or schooling I'm not able to return to work and am on leave without pay, so maybe they will get the piece that the lack of supports, lack of diagnosis, and the general 'failure' of the system has some profound impacts. (And of course, Xian's been the last kid tested in her program---though from the start I've said we need to know what's possible for her in terms of school programs as soon as possible, and I need at least a functional diagnosis to bring to a school! ARGH!!)
Anyway....at least we seem to be moving within the medical realm.
Going to try to add a picture from Victoria...hope it works!
Posted by Linda at 9:07 AM