Wednesday, June 25, 2008

The "Good Witch"

This will be short, as it was a pretty intense and busy day. Both the clinical picture and the test results were enough to get the Lyme doc to start treatment. Xian's Lyme result showed a mild positive (not enough for a CDC positive, but enough for the doctor to begin treatment based on the whole picture), and she tested strongly positive for one of the Lyme coinfections (something known as babesiosis or babesia), which was pretty much the clincher, since it doesn't appear you get a coinfection all on its own. The interesting thing is that this coinfection is known as a sort of North American form of malaria (it's a protazoa that infects the blood), and one of the big signs is...heavy night sweats, which has been a big problem for Xian ever since she first got sick. The doctor also suspects she may have a couple of additional coinfections, but she said that one of them has a number of variants so it can be hard to get a positive unless the test is specific.

She did a physical exam of Xian and picked up on a few things that no other doctor has made any sense of, if they even noticed. She did a couple of balance/equilibrium tests--while I've noticed the differences in Xian's play and figured that her lack of climbing was due to some problem in that area, it was good to see it confirmed as a 'real' issue. She also noticed (and named--but I've forgotten already what it's called) Xian's 'crunchy' sounds when she bends her arms or you hold her hand, and noticed the dilated pupils and 'off' colouring (circles under her eyes etc.), and her weak pulse (Xian's slowed heart rate came up as an issue during anaesthetic). And of course, noticed the language/memory/neuro issues. I told her how Xian earlier had been interpreting her illness, the "bad spell" given to her by a "bad witch"---and she told Xian that she would be the "good witch Glinda" (of Wizard of Oz fame---Xian happened to bring a little "Dorothy" doll with her) and would help to break her spell with some medicine. Interestingly....as confused and 'scrambled' as Xian is now, she was very cooperative and friendly with the doctor---and once we returned to our hotel room she was wanting me to give her some of the supplements (vitamins, probiotics etc.) we'd gotten from the doctor. (We pick up the antibiotics at the pharmacy tomorrow). So, I'm sure she was aware of that conversation---and the mind is a powerful thing, so probably a helpful little 'seed' to plant.

Hoping everything goes smoothly with medication pick up and getting us to the Clipper and to Victoria. We had a harder day today with getting food into her and she's tired so sounds/light seems to be bothering her more. Will try to take things as easy as possible...but looking forward to being back at "Grandma's house".

7 comments:

Sampsons said...

Fantastic!!! On the road to recovery I bet! Great news, congrats Linda and Xian! N

Eliza2006 said...

Sounds like a great doctor. You are very lucky to have found her. That's wonderful that she recognized coinfections and is willing to treat them. I can't wait to hear about Xian's progress. Good luck to your sweet girl on the road to recovery!

Tiffany

Donna said...

Wonderful news. I hope the journey home, and more importantly the road to recovery, is as easy as clicking your heels three times...

SI said...

Wonderful!

Kathryn said...

Linda, I haven't commented before but I have been following your blog, which I found on the WCCD families list. I wanted to share with you that I just returned from Vancouver, where I visited with a long-term friend of mine who has been suffering from Lyme disease (or a variant of - like you I can't remember the names of what she mentioned) and was just diagnosed after a year and a half of visiting every kind of doctor possible. She was also having neurological problems and muscle problems (with her it was her jaw, for some reason, which made her "slur") exceptional fatigue, and bouts of not being able to think clearly at all. While she was telling me this I could only think of little Xian - I'm so happy you have some positive news for her, and I sincerely hope this marks the road to her recovery. Congratulations to you for your dogged determination in getting her the treatment she needs - you're an amazing woman.

best,
Kathryn

Eliza2006 said...

An interesting article on coinfections and treatment:

http://www.rumormillnews.com/cgi-bin/archive.cgi?noframes;read=48763

SKC said...

Just wanted to let you know we're thinking of you, still praying lots and very very happy that things are going better!

Sonya and Clarissa and Peter