Off to School

Xian's had a very busy week, especially compared to hanging around home with me. She started kindergarten and also is now starting to attend daycare. All things considering, it's going pretty well and she is really happy to be back in her old daycare room with many old friends. Her long term memories are still there and she's picking up on routines from a year ago. Kindergarten is a bigger adjustment, with many new people and in a new space, though she has been enjoying that too. The hardest part is the transition between programs after lunch, and that will probably take us a few weeks to work out all the kinks. Her speech continues to improve, so that's helping a lot. She's still having some short term memory lapses and we're still dealing with some of the 'brain glitches' like impulsiveness or getting very over excited at times. Sometimes she'll get herself very wound up and not be able to calm herself down again so we still have some 'whirling dervish' moments. A few people who know her 'from before' have commented that she's looking a lot more like her old self, and I think she is....there are some moments where she does seem to be moving closer and closer to the child she used to be. While she's still not always acting properly with other children, she does seem to be regaining her sense of empathy. This morning Rachel woke up with a bad nosebleed and Xian did her best to try to comfort R. She still has some moments when she just doesn't seem to be able to stop herself from being too rough, but I think her awareness of others is starting to come back.

Xian will be starting on her third antibiotic (for the bartonella) this weekend, and now Nystatin to prevent yeast overgrowth, needed because she's on so many antibiotics. I'm hoping that she'll tolerate it okay---the doctor warned she may have another die off period after starting it, so she'll be starting with half doses for the first week. Hopefully I'll have some idea over the weekend---she'll have her first dose later today. She's also on some supplements/vitamins to help with her irritability/mood swings--and those do seem to help calm her down. (Hmmm, have to try some of them myself!) During the time she's been in kindy/child care I've been mostly running around trying to get various long overdue errands done, and complete my annual report for work, and hoping to book a few long over due appointments soon. Rachel has been happy to be back at daycare with her teachers back from their summer holidays---and to see her familiar playmates again. Unfortunately she's already got the 'back to school' cold---and I'm fighting it off as well. Hopefully Xian won't succumb, given all the bacterial and protozoal battles going on in her body. I can't imagine a cold virus would have much room to get a foothold.

Nice for all of us to be starting into a bit more of a routine---once I see how the next few weeks unfold I'll probably be able to set an earlier 'back to work' date, though I think I need a bit of recuperation time and time to catch up on everything that's piled up at home first.

Back....

Just a quick 'fly by' post. We're back after 10 days in BC and a visit to the Lyme specialist and also recovering from a couple of pretty bad weeks. Xian had a particularly bad bacterial 'die off' period that also coincided with her developing extreme hyperactivity/impulsiveness. (The Lyme specialist figures those symptoms are signs that her brain is recovering, and it is easing off gradually). The good piece is that her speech is coming back, although not quite how I'd anticipated. Not sure why, but I just figured it would 'come back' since she did maintain the one and two word sentences. Her speech is a bit like a stroke victim--a bit slurred at times and with what sounds sort of like an accent, using different stresses on words than she used to. She's asking, "What's ___ mean?" or "What's that?" and even the occasional why question. She's also been talking about longer term memories quite a lot, sometimes it's surprising what she comes out with. In Victoria she said she had a very bad dream---she mentioned "the chalk dream" (the name of a particularly bad nightmare she had when she was four) and has also spoken about some of the details from the original dream. But, what she seems to be trying to say is that this whole experiences is one big "Chalk dream" with Rachel and I in it, and other familiar people. So, maybe she does have a sort of memory of everything that's gone on, but is fitting it into a 'nightmare' category.

The Lyme doctor was quite impressed with Xian's recovery and seems to think that she's on the verge of a big leap forward (crossing fingers). She does think that she also has another coinfection, bartonella, which would explain the strange rashes she's had since early in her illness, and apparently is also a cause of mood swings, rages, and the sort of emotional/behavioural symptoms she's had. So, we'll add one more medication for a month, to the regimen, plus Nystatin to help deal with possible yeast growth with all the antibiotics.

Xian's attending her first day of kindergarten---and was quite happy to push me out the door (a ritual we used to use to help get her to separate when she was little, in daycare). Tomorrow she's starting daycare for a few hours, but no kindy as they are doing gradual entry with half the group attending the first two days. Crossing fingers all has gone well.

Two steps forward, One step back

That's one of the descriptions I've heard used for what happens during Lyme treatment and it does seem to be true for Xian. We're easing out of her bad die off period---the worst of it was for about five days, then a bit less so for the next five. Now I'm not sure whether we're still dealing with the last bits of that, a few old symptoms returning or just the combination of Xian getting back some of her old personality traits but combined with being less able to get her messages across. She's doing more and more that resembles 'typical Xian' -- wanting to be more active (though still in shorter bursts), her interests returning, being far more interactive, and also becoming more particular about thing like having privacy in the bathroom, wanting to pick out her clothes etc. She's trying to talk more but also quite frustrated and aware, I think, that it's not at nearly the same level -- a lot of her language is probably more at the 2.5 to 3 year old level because she'll get stuck on words, or shortens her statements, though she does have some periods where bigger 'chunks' will come out. Her interest in music and movement is definitely picking up -- which also seems to indicate that her auditory sensitivities and problems are diminishing. It's now quite rare to see her plug her ears. The less wonderful bit is that she's now having quite regular tantrum type moments -- sometimes it does seem more pain/discomfort/irritability related (usually you can tell because she wants to hang her head upside down or lie with her head on the cool tile floor, or she'll hold her eyes or bite her finger/hand), and sometimes it seems like she's having them because she's stressed/overtired or frustrated. We went on a field trip with Rachel's daycare and Xian was quite aware that she wasn't getting the same food as the other kids (cookies, sandwiches -- all off her current 'list' with the continued sensitivity to gluten or too much sugar) and so she screamed and yelled for a bit. Of course, when she was in daycare before she was never 'deprived' so I expect it may be one of those areas where there will need to be some adjustment---and hopefully I can try to supply some gluten free, less sugary things that will match what the others are having. Or, maybe it won't be an issue by then---Xian had a few days where she was really craving the things she shouldn't have, after she'd indulged a bit and then felt crummy a few days earlier. (Good lesson for me---no 'Tim Bits' for a while!) The past few days have reminded me a bit of how things were in the fall she went through a big tantrum phase and was also quite 'hyper' and impulsive (like now...) -- seems like, at least in some areas, she is going backwards in her symptoms. But, I'm reminded that she's also been a girl who was always a bit of a 'drama queen', so I suspect that part of her personality is returning with her increasing awareness/alertness and that she's also really bugged that she can't do/say what she wants to. Over the past few days she's been very clingy (unfortunate because it's been hot and humid--so a hot sweaty kid hanging off of me is not really too helpful to my own comfort!), but given that a few months ago she couldn't stand for anyone to touch or cuddle her most of the time, it is a step forward. (Even if I am getting the sauna and weight lifting program!)

We had some great news this week, too. We visited the pediatrician working with ours (ours is on holiday) and she got caught up on the details of what's been going on from our end, was quite impressed with the changes, and said that there won't be a problem getting her and our pediatrician to support the recommendations of the Lyme specialist. I'm hoping to get the retired Lyme specialist in BC to consult and it looks quite likely that could happen. Sounds like they are being open minded and both figure there's nothing to be lost through giving things a try and watching how she responds. (Also sounds like they are aware of the futility of an Infectious Diseases referral.) As well, yesterday morning I answered the door to be given a box with two large bottles of the Mepron sent by the drug company (more than what I bought in the US, which cost about $2000!)---our ped had signed the forms requesting it be provided, and I'd faxed them in last Thursday. So...depending on what the Lyme specialists say, we may now have enough for the rest of the babesia treatment. Was kind of like getting a Christmas present, though I'm not sure Xian feels that way about the stuff. It looks like bright yellow paint and is so thick you can't pour it into a measuring spoon or cup and get the right amount.

A few people who haven't seen Xian in about a month have crossed paths with us over the past few days and all have commented on the huge difference they are seeing---basically that she doesn't seem like a zombie anymore. We were at Rachel's limb difference playgroup and Beth (the physiotherapist who runs the playgroup) was quite blown away. She commented that it really did seem that Xian was 'under a spell' previously and she also thought Xian seemed quite similar to how she was in the early fall. Because I'm with her all the time, while I do know there's change it's harder to really notice the overall changes, and I've also been focusing more on some of the areas that still present her (and me) with more challenges.

Anyway, now that Xian seems to be out of the big die off, I'm hoping that we'll have a nice long period of improvements and stability. The "Lymies" I'm in contact with say that often each die off period after the first one is a bit easier. Guess we'll see what happens 30 days after the first one....might just mark that on our calendar so I don't plan anything much.

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).