It's been a busy couple of days. We've heard from Xian's Lyme doctor in Seattle, who sounds pleased with how things are going--and based on the rash suspects we'll need to add a medication, but she wants Xian to have a blood test done first (I've been procrastinating on that but will get it done next week). She's upped the pm Mepron dose so Xian's now taking a half teaspoon twice a day. She also said that since Xian seemed to improve after she began the azithromycin, before she started the Mepron, that's a pretty good indicator that she does have Lyme, as azith. doesn't deal with babesia.
Also, I managed to make contact with the retired Lyme specialist in BC who is consulting with doctors willing to treat for tick borne infections and he is willing to take on Xian's case if we can find a local doctor. He agrees with the treatment Xian's getting right now and also seems to think that she's responding well---his guess was that she may not need the Mepron for too many months and then can move onto focusing more on the Lyme. Have been in contact with Xian's pediatrician's office and it seems they are interested into at least looking into things---I passed along some information and will be getting the Seattle doc to fax a letter with her diagnosis and treatment plan. The ped is going on a month's holidays so we'll be seeing someone else at the clinic in the meantime---and I suspect that if they do agree to treat they may share the responsibility. I left my copy of Pamela Weinstraub's Cure Unknown for the ped - with the neuro Lyme section flagged - I figured if she's going to be on holidays maybe she'll have some time for reading! (Well, it's a $20 gamble...). I've got two new copies about to arrive anyhow -- Chapters has them on sale with free shipping for the price of two. I think that the ped wants to make a referral to pediatric infectious diseases -- which may be problematic as last word I heard they are still denying there are any Lyme cases in Alberta, but I guess I'm curious how they will explain Xian's improvements from the last time they saw her (in December at one of her sickest points) to now, and why the start of treatment for babesia/lyme has coincided with huge improvements. (Well, it'll be fodder for that 'lyme expose' book whatever happens!) The nurse seemed to be impressed with Xian's improvements -- Xian was calm and looking quite 'sparky' and not doing anything weird (thankfully -- she still does have occasional moments). Whatever happens I think it will be good to have Xian seen by a pediatrician so they can clearly document how she has been improving with the treatment. Maybe that will convince someone? And truthfully, I'd forgive a whole lot of medical 'past history' for an acknowledgment of Xian's improvements, and some treatment, of course!
And....some improvements: I'm wanting to keep track, so though I'd include a little list:
--activity level/coordination improving (lethargy is less) -- Xian rode on the geo bike for about half an hour yesterday, racing her sister around the kitchen island. (Previously the most I could get her to do on the geo bike or any bike was a few minutes, and that's with a lot of help/encouragement). She's also been jumping on the rebounder every day and having a blast. (Didn't have enough balance previously.)
--finished a 40 piece puzzle (aside from about four pieces)
--returning to old interests with art projects (yesterday painted a picture and glued on sequins
--playing with toys more (lined up her little Dora figurines along the kitchen counter in order of height after playing with Rachel)
--going to the washroom independently and now wanting 'privacy' some of the time
--tolerating music in the car a lot more (used to scream 'Turn it off!')
--wanting to play with same toys as Rachel, and doing a bit of 'competing' too (Rachel said this morning that she wants Xian's spell to break a bit more slowly! R.'s having a bit of trouble learning to share again, apparently.)
--trying to communicate with and engaging with adults at Rachel's daycare (waving hello, or saying hi, wanting to join into some activities)
--generally more cuddly, except when she's having some discomfort (but that was always true)
--singing, talking to herself in the 'old way' (right now she's singing, "Scooby do, oh, Scooby do -- You can have it, la la la, You can have it")
--dancing along with kid's TV shows (The Wiggles etc.) instead of being freaked out -- tolerating television programs (used to only want very specific DVDs or videos that didn't bother her visually or have sound that bothered her)
--paying close attention when I read books at bedtime (she 'lost' her attention span and any interest in books in mid fall). She's still not joining in verbally or asking a million questions, but the other night she put her hands in the right positions for the book Piggies. For a while during her illness we couldn't even do bedtime stories when Xian was present because she got so irritated (the visual images and just the sound of me reading bothered her).
While it will be great when her speech returns at her old level, the Seattle Lyme specialist says that will take some time, but we could see big improvements by the end of the summer.
Hope everyone has a good weekend.