The Roller Coaster

We've had a few ups and downs since the last post. Grandma and Grandpa were here for a visit--saw Xian's improvements and we managed to go out for a few meals, go out into stores and do some things that until recently Xian's sensory sensitivities made very difficult. Unfortunately, the last two days they were here Xian started to have what seems to be a 'herx' reaction -- she had the return of her episodes of pain and screaming, got quite 'foggy' and started having bladder problems again. Since this was happening close to the 30 day mark of her medication, it's probably because of bacterial die off. The little 'bugs' apparently release toxins as they clutter up your system, and it's a fairly common happening between the 4-6 week mark of treatment. She was feeling a bit better yesterday, though still had one episode in the afternoon. This morning she is quite sparky and was dancing to the Backyardigans and playing with Rachel, so crossing fingers that she's clearing out that bacterial clutter effectively. The good thing, I suppose, is that her symptoms are in the areas that have posed some of her worst problems, so hopefully that will mean improvements in terms of those areas, too. What I've heard about herx responses is that while they can be quite bad and go on for up to a week, if it is bacterial die off you should see improvements after the bad period.

Anyway, probably also a good reality check for me in terms of what we can plan in our immediate future -- at least until I can sort out her 'pattern' it's probably a good idea not to make any dramatic moves (like ending my leave of absence too early).

Xian's started doing some interesting things with language. With Grandma reading to her, she was repeating what Grandma read, and she's also been repeating/imitating longer statements that she hears Rachel or I say. Her singing to herself is returning--yesterday (despite the 'bad spell') afterward she was singing the Wizard of Oz song and with a fair bit of accuracy. Just before she got sick she was in a phase where she and a few daycare friends were very keen about all things Wizard of Oz after seeing bits of the Judy Garland movie. Xian used to love musicals---might be time to try to borrow a few from the library and see if that interest is coming back. It does seem that her sound sensitivities are diminishing---she's no longer constantly plugging her ears and can cope with music in stores and restaurants fairly well, with an occasional 'glitch'. Really hoping that we see Xian's language begin to return to her former levels---since it has been affected for so long (really, since mid fall) I've wondered whether she will have lasting damage. People keep telling me that kids tend to bounce back very well with Lyme/tick borne disease, so just hoping that Xian is typical in that way.

Oh, and some good news from the ped's office -- we have prescriptions now for the meds she's on and it sounds like they are willing to work with Xian's treatment, though do want some advice. We will see one of the pediatricians next week (Xian's doctor is on holidays for a month). We're also trying to get one of the meds direct from the drug company (they will provide it at no cost), so hopefully that will work out---the doctor signed the forms, so that's pretty positive. I'll still be approaching Xian's psychiatrist as 'back up' --- it would be nice if we didn't need to make too many more Seattle trips, though at least not having to buy the meds there makes a big difference.

Some Interesting Developments

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.

The princess begins to wake up

In most fairy tales, the princess suffering from a bad spell caused by a poisoned apple or a pricked thumb wakes up suddenly after the kiss by the prince. (Though around here, we're partial to the Dora version, where Boots the monkey falls asleep after eating the enchanted apple and needs a hug from a "true princess" to wake up.) With tick-borne illness the awakening is a slower process, the "enchanted" one awakens a little more each day. Because it's gradual, I do want to keep track of the little steps---partly as 'proof' for Xian's doctors and because who knows what value it may have later. (Maybe there will be some publication or other out of this...).

Xian's had a few new milestones over the past couple of days. Yesterday she completed a large puzzle---Rachel had started it and put in all the 'easy' outside edge pieces (it's one of those larger cardboard puzzles in a frame) and Xian completed it except for four middle pieces which were quite similar. She's also sometimes been able to answer "or" questions properly (i.e. "Would you like water or milk?"). Since the onset of her illness Xian's been stumped by them because she's not been able to remember two things at once---sometimes not even been able to answer direct yes/no questions when she's been very ill. She's also slowly adding more nouns. But this morning was a real step. We brought Rachel to daycare and they were having French (which is done via music/movement) and the teacher (Xian's old daycare room teacher) invited us to come in, too. Now as everyone who's been in contact with her since the start of her illness knows, Xian's had horrible auditory sensitivities and a lot of trouble with music in particular....it was one of her initial 'clues' last year in daycare, as she started having great difficulties every time there was a music activity. Xian was thrilled to be invited in (looked alert and happy---another change from the glazed expression), and participated quite fully, watching the other children and listening to the instructions, dancing when there was dancing, singing or repeating when those were required. Blew me away, really! (And her sense of dance/rhythm seems to be fully intact, too!) She did have a few little moments when a pitch or sound bothered her (she'd let out a bit of a yell), but only a couple of times. We had a chance to chat with the teacher for a few minutes as we were leaving (and caught her up on the diagnosis---she's continued to show a lot of concern about Xian's situation), and Xian's been invited back for music/French each week, which we'll try to attend. (Rachel, on the other hand was a little monkey because her mother was present---so will have to work on that a bit! She was happy to have us there---a little too happy, if you know what I mean...). Xian's now looking alert and aware far more--tends to glaze out if she's not feeling well, or if we're in the car she'll tend to zone a bit. She was very smiley first thing this morning and really didn't react all that badly to the mepron---had a little reaction after her azith. dose, but not nearly as bad as the past few days.

Switching the order of her meds does seem to work better--as well as taking them a few hours apart. I think it's been a bit hard on her system to take them closer together. Xian's still struggling with sleep---somehow I suspect that's going to be one of the symptoms to leave last just because that's the one that causes so much impact on all of us. But, she's not sweating quite as much at night and she's tolerating more variety of foods, with any 'bad' reactions a lot milder than they once were. So, definitely seeing the medications working, thankfully.

Getting the 'zombie' out

I've been participating in a Canadian Lyme chat group where there's a group of parents who've had kids recover from Lyme and one of them commented that it was like watching the zombie leave her child. Well, Xian's zombie does seem to be losing its hold little by little. She's now having some very good moments every day---interacting with Rachel in the bathtub, interested in what's going around her and returning to old habits. This morning when we dropped off Rachel at daycare they still had some 'breakfast snack' out and she told the daycare worker she wanted some too and and then went off with Rachel and the worker to wash her hands. She gave Rachel a big hug when we were leaving (her 'old' pattern and something that hasn't happened for months) and she was also watching some of the activities very keenly, I think if we'd stayed longer she would have joined in. Her communication is gradually changing--she's now starting to add the right pronoun instead of echoing exactly what's said to her. She's still having trouble coming up with nouns, but that's improving little by little. (Today she saw a picture of herself holding a popsicle and then asked for a popsicle by name.) Apparently the 'word finding' problem is quite typical of Lyme. The new thing she's been doing is growling/roaring when she's upset/angry/frustrated or feeling discomfort/pain, so am trying to get her to use her words, but it does beat screaming at least. And, growling is somewhat 'old Xian'---when we went to China and she met her sister, when Rachel would try to whack at her she would growl at her to get her to keep her distance. (R. was a bit territorial about her stuff, food, and I guess she figured it was safer to whack someone who was the smallest of the bigger people!) I've changed around the order of her medications, since one is supposed to be taken on an empty stomach and the other on a full stomach and she's always hungry first thing in the morning now---so trying the mepron first, then giving her the azithromycin a few hours later. The mepron definitely makes her roar---I suspected it was the thing making her feel awful in the mornings....well, now it's confirmed. Her pm dose is less and doesn't seem to have quite the same reaction. I've heard from a few parents that it's the 'nasty' one--some kids will refuse to take it if they detect the taste, which fortunately isn't yet a problem. (At $1000 a bottle spitting it out would be a bit of a tragedy!)

Am trying to gather up some info to approach Xian's pediatrician---also sent another message to her psychiatrist (basically communicating the continued improvements and hoping that someone locally will treat her), and have also emailed the retired BC doctor who has been working with practicing doctors on treatment plans.

Xian's funny rash has pretty much disappeared, though what's interesting is the little round spots have flattened into the kind of streaks that she's had since early in the new year---so it does seem like it was a bartonella rash (another of the coinfections suspected).

This week....

Xian's continued to have some reactions from about the 2nd day of the new medication (Mepron, for the babesia). Very similar to the couple of days she reacted to the zithromax---lots of little crying outbursts, saying that she's scared or angry or "I'm crying!" Her mornings are the worst, though today was a bit better---she'd had a full 12+ hours of sleep (I'm hoping this means she's on a new sleep trend) and woke up happy and smiling, but after her doses of both medications she had some reactions on and off until about noon. She's looking 'clearer' this afternoon and more smiles and silliness. We attended a playgroup Rachel goes to for kids who have limb differences and the coordinator, who last saw Xian in mid June said that she definitely noticed a difference in her speech---even though she was having the odd crying moment. (She seemed to be having some pain/bad feelings in one arm and her hand.)

Yesterday Xian started breaking out in some odd looking bumps -- they don't look like hives, as they appear in little curved lines and clusters and some have a clear bubble of honey coloured liquid. I posted about it to one of the Lyme discussion groups and it sounds like it is a bartonella rash, which can also appear as red stretch mark type lines---Xian's had some of those previously, on her neck, top of hands and across the backs of her upper legs. The sort of interesting bit is that once Xian's little bumps showed up she started showing some improvements and seems a bit less 'foggy'. Will keep an eye on them and call her Lyme doctor if they get worse, but apparently the two week mark of zithromax is when they've shown up in other kids being treated.

Anyway, off to take advantage of Xian's cheerful mood, hopefully we'll be seeing more of that as the days continue!

Xian the media princess

Xian and I went to the Lyme rally here and Suh Ling Goh, one of the local media who covers health for Global asked me to do an interview (ack!). It went pretty well....wonder if we'll be getting any phone calls from any of Xian's doctors?

Xian's and my interview on Global TV:

Go to http://www.canada.com/globaltv/edmonton/video/index.html -- then click on "Health matters" and our story is the one at the top (or close to the top) that says "Lyme disease".

You can see Xian looking like a 'cool kid' with her Dora hat and sunglasses---though the reason for wearing them is 'survival' -- the Lyme has given her sensitivity to light.

Another story on the Rally:

http://www.canada.com/edmontonjournal/videogallery/index.html# -- click on Lyme Disease Rally

Xian's been having some reactions to the new medicine (Mepron). Started at the two day mark the night before last, same as her reaction to the Azithromycin. She has bouts of crying and pain, times when she says she's scared or "it's scary." I think she's having occasional hallucinations maybe, based on some of her comments about whatever it is that's scaring her -- an adult we know who was treated said that she had them on and off for the first month of her treatment. Yesterday she also had a sore knee and was limping quite a bit---have heard that the Lyme bacteria when under attack will 'show up' in new spots. She's also started needing to spit a lot again--she's had this at bad points when her taste sensations seem to be 'off'. This time around her 'herx' doesn't seem quite as bad as the first time (yet...) and she does have periods where she's feeling better -- usually once the afternoon hits. I've also been told that sometimes there's a bad reaction at around the one month mark--something to do with the life cycle of the bacteria. Guess we'll see. Overall, though, Xian's still continuing to show improvements, even on days when she's not feeling so good. She seems to know that her medicines are making her better---she's constantly going over and handing me one of the bottles. Now I just have to get her to remember when she gets the doses!

We're off for a visit to Chuck E Cheese (and maybe a bit of shopping beforehand while I have something to 'help' with the cooperation) and to buy today's paper to see what the coverage is for the rally -- apparently it's quite good. Will see if there's an on-line link later.

Progress report

Xian, Rachel and I went to the pools at the Legislature a few days ago -- as you can see, Xian's now attempting her old 'cheesy' smile. You can see, too, one of her symptoms---the clenched hands. Sometimes she has a lot of difficulty unclenching them---I suspect it's probably caused both by muscle involvement and perhaps weird sensations or pain (they also get very, very hot). But, even a couple of days later her hands seem to be 'open' more of the time.

Xian's done quite well with the Mepron. She takes it willingly---which surprises me as I'd been told that many kids will refuse it because of the taste and I'd have to hide it in something. But no, she sucks it back from the syringe and then shudders a bit. She woke up smiling this morning---happy, cheerful, more like the 'old' Xian. During her illness mornings have always been the worst point in her day---she'll often awake crying or even screaming and is normally very irritable until later in the day. While she's still a bit worse in the mornings than later in the day (apparently a big Lyme trait), she's not waking up feeling uncomfortable. Xian's showing lots of little signs of improvement---seems to be tolerating a bit more variety in foods and not having the severe reactions if she gets too much sugar (and will sometimes refuse sugary things now after she realizes it made her feel yucky), speaking a bit more and more interactively, though still struggling with language. I expect that whatever damage has been done by the infection will take some time to repair. Apparently with CNS Lyme lesions can form on the brain or spinal cord---don't think Xian has any spinal involvement (though may have earlier with the problems she had walking/moving), but probably has something going on in her brain. With Lyme, unlike other causes, they can completely resolve, so hopefully that will be the case for Xian. She is popping out with occasional full sentences that aren't repeating something we say, so things are coming along. Rachel keeps commenting on things that she sees as signs Xian's "spell" is breaking---"Xian like cuddles now," "Xian's talking is starting to work again," etc. I bet daycare is hearing some interesting things! Rachel is a bit jealous of Xian's medicine regime---though she's getting the odd vitamin just to make her happy.

Xian's sleep is improving gradually, though with our hot weather and her night sweats (will be happy to see the medication kick those away), she's had a few nights where she has trouble falling asleep. I've been giving her icepacks (or rather, frozen 'boo boo bears') to cozy up with and they do give her some relief. We're camping out on our main floor to stay cool---Xian likes the leather couch, but I usually have to mop up the puddle that forms under her by the time I'm ready for bed. (My menopausal friends say they can identify!)

Xian and I met up with a woman and her two boys who are all being treated for Lyme (they contracted it in the Kootenays in BC) yesterday. This was the woman who told us to call Dr. M in Seattle. It was helpful to hear her experiences, especially in terms of making sense of what Xian's been going through---she had the visual, auditory sensations as well as hallucinations, and could also tell me what Xian might be experiencing in her hands. She also said that she figured that we might see fairly good recovery with about 6-8 weeks, since Xian's already improving. Here's hoping!

I'm going out to see the Canadian premiere of "Under Our Skin" (a Lyme documentary of course---but who knows maybe I'll actually get out to see a movie one of these days!), a friend is coming over with her daughter to hang out with Xian and Rachel. It's hot here so expect they'll hang out in the backyard and paddle in our little pool.