Thursday, June 5, 2008

Waiting....and Appointments

Time is crawling by while we wait for the Lyme test results, but we had a few appointments. Xian's psychiatrist was quite interested in the Lyme possibility, but passed on that the psychiatrist at the Alex was wanting to provide an autistic spectrum disorder label---not anything psychiatric. However, while we were there she could see some of Xian's changes, so I don't think even she believes it. Xian was not feeling well and had her head on my lap--and while not talkative, she was making good eye contact. Today we met with Xian's FSCD social worker (family support for children with disabilities---they provide respite funding and some other supports). She said that it's very unlikely Xian would get the autism label, since an autism specialist would need to support it, and Xian's seen one of the respected ones here--which basically leaves her in no man's land for autism services (though Xian's ped and the psychiatrists all decided Dr. G. suddenly didn't know anything after he disagreed with them!). The SW also said, and she has a lot of clients with autism, that Xian simply doesn't fit that diagnosis. She was very interested in the Lyme possibility, partly because it's something treatable, and also because she too says that Xian's fluctuations and physical symptoms just don't fit with the developmental problems that she's used to seeing. And, she got to witness a little---Xian was feeling unwell and lying on the couch covering her eyes, being irritable, not speaking and in the big fog. She started asking for "bandaids" and I figured out that what she meant was "medicine" and gave her some Motrin. Within about 15 minutes she was sitting up again, playing and speaking and looking quite a bit better. Sort of proved what I was saying during our interview about suspecting a lot of Xian's odd behaviours are related to discomfort, pain, and odd sensory things going on, as well as something that's fluctuating in relation to her brain. I also mentioned what I'd heard about potentially running into difficulties in terms of getting treatment here, even if her results are clearly positive, and she was quite funny---she wants me to call her right away and figures that it would be something to make very public.

Have been doing a little on line research (okay, for those who know me, more than a little!) and found some clips of a new US documentary on Lyme. Very eye opening...

Here are a few of the links:

UNDER OUR SKIN: An Infectious Film about Microbes, Money, and Medicine

Film Trailer:

Excerpt #1 - Patients Abandoned:

Excerpt #2 - The Perfect Storm of Diseases:

Excerpt #3 - The Price of Misdiagnosis:

Excerpt #4 - Physicians Under Attack:

Excerpt #5 - Lyme Journey:

1 comment:

SI said...

Very scary but I'm left wondering, what are the politics surrounding this disease. It seems like it should be a simple case of test and treatment. Why is this disease so shrouded in mystery and denial? Very sad and unfortunate for so many people.