Thursday, December 25, 2008

Mamma Mia, Happy Holidays!

We've had a busy couple of days -- and fortunately for us, Xian's been having a good period with very few symptoms and a bit of appetite improvement. Considering we've had lots of social events (which tend to still be a bit harder for her to deal with than 'life at home') she's done very well. Will try to post a few pictures of both girls once I have a chance to actually get both of them in one picture and where one of them isn't doing something goofy...which is what I have so far! This year's holiday is far different from Xian's last Christmas---which was mostly spent in hospital in a fog. My own recollections of last year are a bit of a blur, and I have to confess that my preparations this year definitely brought back those feelings from last year, when it was clear Xian was very ill but there were no answers. This year, though, Xian has been an active participant---she and Rachel have been in charge of our tree (a four foot silver tinsel number). Our holiday music has been a bit unusual. I finally managed to get a copy of the movie DVD "Mamma Mia"---we've had the CD and both girls love singing along in the car, well, until the CD player in the car decided to pack it up...that's on my Jan. to do list. We have the DVD that includes the 'sing along version' and both girls are keen to belt out "Mamma Mia", "Money Money" and more. (Fortunately they are mostly uninterested in the story line and haven't yet noticed the couple of curse words...though I guess it's a sign of Xian's recovery that she's now trying to 'expand her voculary' in such ways occasionally!). I'm hoping that one of these days they'll go to bed early and I can actually pay attention to the movie instead of being the musical theatre director (they prefer to sing while being videotaped).

Xian's also hit a new milestone. She actually has a bit of a real cold, with a cough and 'froggy' voice. Rachel and I have had it for a few days, and what's been typical since Xian has been sick with Lyme is that she'll look pale and seems to have something 'extra' she's dealing with, she won't actually show any typical cold/flu symptoms. From talking to other Lyme sufferers, it seems that the lack of cold symptoms happens to quite a few folks who've been more severely ill...given that Lyme messes up the immune systems, I have to wonder if it doesn't mess up the ability to mount a response to viruses. Anyway, while normally a kid with a cold won't be anything very exciting, this seems like a pretty positive indication that Xian's immune system is 'coming back'.

We're off to another dinner with relatives. It's nice to have a break from our hectic morning routine and all the school/daycare drop off/pick ups/transfers, and given all the weather/travel problems I'm very glad we decided not to go anywhere for Christmas. We do have another Seattle appointment, but not until towards the end of the holidays--hopefully by then that Pacific Northwest snow will be finished.

Happy holidays to everyone and all the best for 2009 -- I can't say I'm at all unhappy to see the end of 2008, and am hoping that 2009 sees a big remission to Xian's illness.

Friday, December 19, 2008

Long overdue....

It’s been a while since our last update. Life has been pretty busy with work—a little too much, too soon in terms of Xian’s needs. Her time on the Amoxicillin hasn’t been too much fun (she had her azithromycin switched for amoxi at the end of Oct.), as it makes her feel nauseous fairly constantly, which also has an impact in terms of getting her to eat enough and take her other medications (one needs high fats and the sulfa/Bactrim irritates the stomach). The work I was doing in November required helping with some morning classes, and that was pretty difficult---having to get food and the meds into Xian (pretty much an hour and a half process on a ‘good day’) and then half the time having to figure out whether she was feeling well enough to actually attend daycare or school. She’s definitely thinner at the moment although her appetite is slowly improving again. She’s also had on and off sleep issues as the meds have given her die off – a bit more constant this cycle, too. Not quite sure how I will manage with work in January, though I’m meeting with my boss next week before the holidays. One of our issues, especially in regards to work, is that people believe because we now know what she has and she’s getting treatment that everything is fine and 'back to normal' now---not realizing that we’re still dealing with months of meds, lots of medication side effects and cycles of bacterial die off that make her feel very ill and also give her periods where significant symptoms will return temporarily, including the neurological ones. We will likely be dealing with chronic illness until her treatment ends, but because she looks so much better than she did (and her issues aren't immediately visible) the assumption is that she's all better and I can do everything I used to be able to do.

Everything pretty much takes me twice as long as it used to in terms of work and I can’t accommodate much that’s ‘last minute’--we're also still dealing with many appointments as well as the Seattle trips every 2nd month (we're now nearing the $10,000 mark for our expenses there, with no real hope of reimbursement, although I am certainly going to try). My Christmas wish for this year is that the local medical community will finally step up to the plate in terms of Xian’s illness, and be willing to consult with a Lyme specialist directly so we won't have to keep making those trips. The really strange thing is that I was contacted directly by one of Xian's specialists to ask if I would share the contact info for her Lyme specialist for another child's family...pretty sad state of affairs when the doctors are coming to us, don't you think? Though I guess it's at least a positive move that someone is recognizing neuro Lyme symptoms and that the child may be able to at least get treatment before degenerating completely.

The good news is that cognitively Xian continues to make gains and lose symptoms, even as she’s dealing with ongoing physical discomforts. Her memory of when she was very sick is also coming back in bits and pieces and she does seem to have memories of times when she was unable to communicate, though that’s a bit frightening for her. She also is quite aware that there have been changes to her personality and she’s been talking a lot about “the Old Xian” and “the New Xian” She decided she needed her hair changed (bangs cut) to make herself look different as "The New Xian"---she doesn’t like how she appears in the pictures from last year when she was much sicker. I’ve been pushing to get some speech assessment/support at school which looks like it’s in the works---language seems to be her biggest area of frustration because she can’t get things out as easily and knows she’s not able to speak as well as she could before. She still has minor slurring/pronunciation issues, which get a bit worse when she's having bacterial die off---I’ve heard that with Lyme there can be vagus nerve issues, which would probably explain the speech, swallowing, and digestive/urinary issues she tends to experience all at the same time. They are all improving gradually, but come back often enough to remind me that she's far from finished her treatment, even while she's far ahead of where she was a month ago. Her biggest gain in the past month has been getting her drawing skills back--she's now back to spending a lot of time working on detailed and very recognizable drawings, including trying to represent pictures she sees elsewhere. (The new thing is drawing "Batman girl").

It’s strange to think that a year ago Xian was beginning her series of hospital stays….a pretty horrible time for all of us. I have to wonder what might have been if she’d been accurately diagnosed back then and it’s hard not to feel angry with a medical system that eventually simply shoved her out the door with no prospect of diagnosis or treatment, especially when earlier treatment would have made a world of difference and spared her and our family a lot of suffering.

We’re having a low key Christmas this year---mostly focusing on activities the girls want to do, and we’ll head to the coast just before the New Year and spend a few days in Vancouver to bookend the next trip to Seattle, which I am truly hoping will be the last one. While the Lyme specialist there has been essential to Xian’s recovery, travelling with the kids and with Xian often feeling crummy, dealing with meds and Xian’s diet while away, border crossings (which are always 'interesting' as a single mom of adopted kids…) etc. is pretty exhausting. The next trip, I figure, should be somewhere with a beach and activities for the girls.

Will try to post some new pictures once I get around to actually taking the ones I'll be sending with that email Xmas card.

Sunday, October 26, 2008

A long overdue update

Xian’s continuing to make progress and lose symptoms. She still has her ‘bad days’ every month, but they are more and more predictable, usually hitting about a week every month unless there are new meds in the mix which seem to increase the bacterial die off.

She’s looking gradually more like the child she used to be, with her remaining illness in less 'obvious' areas. She’s now able to remember things that happened earlier in the day or week and can answer ‘or’ questions (Do you want milk or water? For months she couldn't hold two ideas in her mind at once.). But she’s still a bit more easily distracted than she used to be, and can lose her train of thought if she's interrupted, or if there's too much 'going in' at once. The hyperactivity is mostly gone and only resurfaces mildly during her herx periods or when she gets too much stimulation. At least some of the time her 'off' button seems to be working okay now. Xian’s drawing is also starting to come back in bits and pieces---she’s back to drawing flowers, objects and including exactly the same sort of detailed eyes she used to do, and doing very meticulous colouring (we brought colouring books to Seattle--the same one she used two months ago, and there is a huge difference in what she can do now). She’s also wanting to do a lot of writing--though now what she used to do in correct order is often in reversed or scrambled order, interestingly (apparently not unusual with Lyme to lose some 'sequencing' skills or do have some strange perceptual quirks). Her fine motor skills are pretty much back and now improving beyond where she used to be. In kindergarten they’ve been sewing and Xian hand stitched a little pillow and insisted on making a princess doll and actually managed to do it all by herself. The woman who has been working as her assistant said Xian was the best at sewing in the class. Quite a change from a kid who couldn’t uncurl her fingers or hold a pencil or wasn't even able to care about such things. Daycare staff have made the similar observations about her fine motor skils. She and Rachel are both pretty much back to where they were: getting into mischief together, arguing over toys and competing with each other to do everything 'faster' (well, except getting ready in the mornings). Xian’s pain responses are fully back (remember, she couldn't even feel an IV insertion...) and for the first time in many months when she fell and bonked her cheek (big bruise!) she cried very hard. (Rachel was quite alarmed at this new development and cried too. She said, “I thought she was died!!”)

We'll be finding out what medication changes she'll have soon. She's finished her round of sulfa---she was supposed to finish after a month, but we had a little extra and I extended it to go to when she has her periodic die off, because I figured it might be good to kick those spirochetes a bit harder when they are 'down'. She's had some die off symptoms this week too, so hopefully we've smacked down a few more bacteria.

I've been in contact with the CBC producer who is going to be working with me on the radio mini documentary on Xian's story and she has some interesting ideas---she's hoping we can get Xian to try to tell as much of her story as she can, and was quite interested in the fairy tale interpretation that both kids keep returning to. For Xian, I'm sure it does feel like waking up from one of those 'sleeping beauty' type bad spells. The Disney Sleeping Beauty video is out again and the girls have been watching the clips on BestofDisney on Youtube...though Xian is also quite convinced she just might be Snow White---now that she has her proper Halloween costume. Will try to get some pictures---I just hope those costumes will hold up until the big day, they are getting a lot of wear already. Xian's 'cheek bonk' happened when she was trying out those princess shoes and tripped over a box---I guess the bruise is a sign of things moving back to normal, as she used to love wearing all those dress up shoes!

Thursday, October 16, 2008

"Before" and Three months of Treatment

Here are two pictures: one is a picture of Xian at the height of her illness -- she has what I've been told is a pretty classic neuro Lyme "blankness". The picture in the car was taken in September and you can see that her 'spark' is back.

Will post an update soon, but thought that these two pictures provide a pretty clear picture of the changes since Xian's started on her treatment.

Wednesday, September 17, 2008

Little by Little...

Is how Rachel talks about Xian getting better. However, since she started the antibiotic to hit the Bartonella, she's made a few 'bigger' improvements. Last week sometime her short term memory started coming back and now she is able to remember (most of the time) the names of her teachers---both old and new, and events that happen to her during the day. A funny thing happened a few days daycare one of her old teachers is named Alison, but when Xian was in her class she used to call her "Annie"---I'm not quite sure how it happened, some sort of imaginary play name that just sort of 'stuck' and then it was Xian's special name for her. As Xian was going to sleep she was telling me about something that happened with 'Annie' and I was thinking she must be talking about one of the kids in her new school. Well, Alison mentioned to me yesterday that Xian was calling her 'Annie' again...something she hadn't done since probably early last fall just before she really lost her language. Xian's also been talking a lot about the children who were her good friends in daycare last summer (and who moved last fall). Sort of like her 'old memories' end just as she was getting sicker. Her speech is really improving---she's no longer slurring words together and most of what she says is understandable now, getting closer to her pre-illness speech. She's slowly losing the impulsiveness and hyperactivity, though still seems to need to test out 'consequences' to her actions. (Yup, like this morning inserting beads into her nose---I hope we got them all out as I really don't want to have to bring her into the ER for removal!) She's still having a harder time remembering sequences of things or the 'what happens next' aspects to her day, but her kindergarten had a great idea for getting her to put the activities on a sort of chart and today Xian and I took pictures of each 'school' and hopefully we'll be able to use that to help her sort out where she's going after lunch when she moves from daycare to kindergarten. While she still presents some challenges to her teachers and daycare workers they've all been commenting on the progress she's making, and it does seem that every day something gets a bit easier for her.

She hit the next 30 day mark yesterday---she had a few ups and downs over the weekend and her eyes/head has been bothering her a bit. Other than that the only real signs this time around of her herx/die off reactions have been a few mild fevers/sweats and the dreaded insomnia. However, now she's managing to stay in bed even if she's having trouble sleeping---last night she watched "Dora" in my room until she finally fell asleep. (Last month when she was having trouble sleeping she couldn't seem to stand being 'on her own' and was getting up to all sorts of antics when she wasn't sleeping.) We see Xian's pediatrician on Friday, and I now have some information about a Lyme specialist in Ontario who may agree to consult -- he's an infectious disease specialist, and one of few in the country who treats Lyme according to the ILADs guidelines. I've been in contact with a mom whose two young daughters were treated by him---they both had quite complex cases, though live in Ontario. It would be nice if we didn't have to keep travelling to Seattle---as much as the specialist there has helped, the travel is not easy, especially when there's also Rachel to consider.

Rachel's finally getting over her cold, and has been enjoying the great weather and all the opportunities to play outside with her daycare buddies.

And I'm finally getting around to accomplishing a few of the things on 'the big list' of all the stuff that went to the back burner when Xian was so sick---dentist appointment, car maintenance and this afternoon I'm getting my hair cut. Even the house is starting to get clean and a bit more organized.

Will try to report back after Xian's appointment on Friday.

Friday, September 5, 2008

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.

Tuesday, September 2, 2008


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.

Friday, August 8, 2008

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.

Tuesday, July 29, 2008

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.

Friday, July 18, 2008

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.

Tuesday, July 15, 2008

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 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.

Monday, July 14, 2008

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).

Friday, July 11, 2008

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!

Saturday, July 5, 2008

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 -- 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: -- 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.

Thursday, July 3, 2008

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.

Monday, June 30, 2008

Day by Day

...Xian is showing little improvements. One big change is that she's returned to her former cuddliness---wanting to sit on my lap, enjoying Rachel's hugs and not minding touch on her head most of the time. (One of the things her illness did was make her super sensitive to touch on her head--it's been obviously uncomfortable and maybe even painful for her). She's also seeming a bit more aware of her surroundings, and that seems to make her feel a bit more anxious and clingy---something that was sometimes an issue for the 'old Xian' too. Rachel has been noticing all the little changes as well and keeps remarking that, "Xian's spell is breaking because she likes cuddles now." Xian's expression has changed as well---hard to put my finger on it, but she just looks more "there" and like her light is turning on a little more each day, when prior to the antibiotics she always had a glazed/foggy expression even when she was happy, and her expression was often very 'flat', without emotion. Yesterday after dinner we went out with my cousin to the Legislature wading pools (which Rachel loved---no deep water so she could do a lot of 'swimming'!), and when my cousin took pictures of the girls Xian even gave her that old familiar 'cheesy' smile that was a common feature in a lot of our old photos. (While Xian's been sick, for some reason, cameras have sometimes provoked odd behaviour---panic attacks or frantic behaviour, and she's often not wanted her picture taken.)

Tomorrow we add her Mepron to the azithromycin. So far, Xian's not had any nasty effects from the azith, though the probiotics and digestive enzymes are probably helping, too. Mepron is known to cause nausea and I've heard that it can be a challenging one to get kids to take--Xian's been very good about her meds and the supplements, so crossing fingers that will continue.

Off to get the sleeping beauty out of bed. We have a playdate with her old daycare 'boyfriend', so hoping that she has a good morning.

Saturday, June 28, 2008

The treatment begins....

We're back in Edmonton now.

Xian started on her first medication (azithromycin, an antibiotic) the night we returned from Seattle. One of the things that can happen, and indeed is a clue that treatment is 'working', is something called a 'herx reaction' or herxheimer reaction -- with spirochete bacteria, they are known to release toxins as they die off and so symptoms will often get worse before they get better. On Xian's 2nd day of medicine she began having sudden crying fits, something that's happened in periods when she's been more ill---these aren't like the food reactions, just little bouts of crying and being in pain. Yesterday (day three of azith) she had them on and off over the day, plus had a couple of laughing fits, which we haven't seen for a while, but were a key part of her symptoms in December and January. Since 'day 2' she's also been having what I'm pretty sure are hallucinations, on and off -- but the real difference on the medication is that she's been quite able to talk about what's going on and will say that she's scared, or that she sees scary things. In Victoria we went into a Chinese restaurant and they had music on---she made the usual move to plug her ears, but said, "That hurts my ears!" something that's huge for her---while we've all noticed her auditory and visual sensitivities through her actions, she's never been able to articulate anything about what's going on. Yesterday there were a few moments where she simply looked 'clearer', more focused and aware of her surroundings---hard to say exactly what it was, but just looking a bit more like the 'old Xian'. Yesterday afternoon Xian handed me a book and wanted me to read to her---one of the consequences of her illness has been that she's had no ability to focus on reading and little interest in something that used to give her pleasure--I can't even remember the last time she wanted me to read to her, she stopped being interested in books in the early fall, and while she 'tolerated' read aloud time at the PLAI program, that was often the time that she'd begin closing her eyes and doing odd visual sorts of things. I've wondered if sometimes the bright colours/contrasts in picture books made her headaches and visual symptoms worse. After one reading of Puff the Magic Dragon she wanted me to read it again, too.

Yesterday Xian also started on most of the supplements that Dr. M. is suggesting: she's on probiotics and digestive enzymes to help counteract the effects of the antibiotics, some vitamins, plus some homeopathics to address her symptoms. Probably a bit too early to tell how they are working, but she did seem to have a 'good' evening in terms of eating dinner and feeling fairly good. Sure would be nice if some of her tummy issues improve!

I'm going to try to keep track of Xian's responses/improvements etc. on the blog---figured I could keep people informed and also keep a record of what happens for any future use, whatever that might be.

A couple of people have asked about the potential course of treatment. Dr. M. said that we could be looking at about two years of treatment, but changing medications along the way to deal with coinfections, and then likely tapering into supplements and keeping an eye on symptoms to see how Xian's immune system copes with things. The mom of the Edmonton teenager treated for Lyme, said that he had some initial setbacks (probably due to Herx reactions) but that they saw big improvements in a matter of about two months, though he did need to continue antibiotic treatment for almost a year.

Xian's sleep pattern is also changing on the medication. While she's still struggling a little to fall asleep, she's now sleeping a lot longer. She crashed last night sometime after 10:30 (we're still dealing with the hour time change from BC, so not as bad as it sounds), but is still asleep this morning at 10:40. This is the first 12 hour night she's had since before her illness, aside from a couple of nights when she was medicated and had a high fever in the hospital. Now the trick will be to move the bedtime up, but that we can manage. Rachel is taking advantage of Xian's big sleep by eating fruit and chocolate---the things that are off of Xian's menu at the moment.

So, things are looking fairly optimistic. After the travel and shelling out the big bucks for medication (let's just say that Mepron, the babesia medication, is the price of liquid gold!) I wondered if we'd see any effects at all, so the past few days of seeing Xian have some reactions has been pretty darned good. When she's having a bad experience I keep telling her that her medicine is working and she needs to be brave, and it does seem to sink in. (We saw a Disney channel movie in Seattle where a Chinese teenager discovered she was a kung fu warrior princess---I missed the title, but it was a good movie, both for Xian in her current situation, and for blasting the 'compliant Asian girl' stereotypes. Will have to see if I can find it on the on-line Disney Channel schedule and report back.)

Today is also a special day for us---the anniversary of Xian's adoption four years ago. We'll try to find some way to celebrate---probably order in from our favourite Chinese restaurant, though I might forgo the cake this year (my gluten free baking skills are not quite there yet, though we might have a GF mix kicking around somewhere in the pantry). I'm sure we can stick candles in something!

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. 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".

Tuesday, June 24, 2008

Crossing fingers

Just killing some time in our hotel room before we head off for Xian's appointment. I did contact Xian's ped's office on Monday, but the nurse said nothing had come in for the Lyme test, though the test for celiac disease was negative (which I guess is why she left the message?). Really hoping that the Seattle doctor will have receive the test results or at least be able to access them.

Our trip over went well. Much easier to take the Clipper than to drive and the cab ride from the pier to our hotel was short. The hotel is working out fine---right beside a big shopping plaza with lots of little restaurants. I had been a bit worried about finding things Xian could eat (given she's now severely gluten intolerant and not tolerating fructose/sugars very well, either) but there are quite a few we can choose from. She had a big bowl of chicken noodle soup at an Asian restaurant and they substituted rice noodles for her. Found a bookstore and bought Pamela Weintraub's Cure Unknown: Inside the Lyme Epidemic -- read the first six chapters last night and it describes Xian's medical experiences thus far, though from the range of illness described it does seem like if she has Lyme, she has a severe form of it.

She's had a bit of a rough morning -- she's had about five days now of bad insomnia with early waking, so am sure part is fatigue. She's been asking for 'medicine' (Tylenol) a lot, and having little bursts of crying and rolling around on the floor, so we are sticking to the hotel room until her appointment. Hopefully she'll keep it together until we get to the doctor's office.

Will report back later as soon as I have a quiet moment.

Sunday, June 22, 2008

Waiting impatiently....

Just a quick update--I know a few folks have been checking for news, though not too much to report aside from some small glimmers....which I am trying not to over interpret. On Weds. I called Xian's ped's office---I'd received the statement from the lab, which included the breakdown of the billing and some descriptions of the tests (no results, though, as that must come via a doctor), so figured if I got my piece it was likely to be at Xian's doctor's office as well. The nurse returned my message to say that there was nothing in yet, though I have to wonder if it just wasn't in Xian's file yet---but maybe on someone's desk or in box? I checked my voicemail yesterday morning (we're at my parents' getting ready for Xian's appointment in Seattle) and there was a new message from someone at the ped's office asking me to call them. So, sounds like the results are in. Wish I could remember the names of all the nurses---it was 'Marci' who left the message, not someone I recall as one of the names of the nurses there. So am thinking it was one of the receptionists---which might mean they're calling to ask me to make an appointment rather than doing any sharing of results. Anyway, guess I'll see when I can talk to someone there. Will try to call them before we head off on the fast ferry tomorrow morning....

Hope to manage an update after we see the doctor there. Crossing fingers that she'll have the results and will have a good idea of what Xian's been suffering from all these months.

Sunday, June 15, 2008

Busy, busy, busy...

Have been getting transport and such organized for the Seattle trip. Xian and I are taking the Clipper from downtown Victoria to downtown Seattle---certainly a better deal than flying or car rentals and ferry rides. (The Clipper is a fast ferry and the trip takes about two and a half hours---so saves us time, too.) The hotel where we're staying has free wireless, so hopefully I'll be able to update the day of Xian's appointment. Xian's got a passport (as do I) so just have to bring along the copies of her adoption records verifying that I am her sole parent---good luck to any custom's agent trying to get Xian to answer questions about who I am and what's going on. (The last time someone asked her that question -- in her last Emerg visit in April she told them I was "Uncle Bill"!) I do have a letter from her pediatrician mentioning that she's ill, so guess that might be worth bringing along, too.

Rachel's had a bad cold all weekend, so we've been close to home. She's feeling better today aside from coughing fits and being a bit needy. She's reminded me a few times that "it's not a bad spell, though. It's just a cold and a froggy throat." Xian was headachy yesterday and was irritable most of the day, not eating much, and wanting to lie with her head on the tile floor, though she did have a couple of good periods where she was playing with some little Dora figures in a game set Rachel has---the interesting thing I notice when she does imaginary play is that often her vocabulary improves, temporarily, but then she's back to getting frustrated that we don't understand what she's asking for minutes after the play ends. (Lately she'll say, "I want it. Get it for me," giving no clue what the "it" is -- so we go through twenty questions or asking her to take us and show us.) She was happier today--I was also more careful about her diet -- she did have a touch more sugar yesterday and that didn't help things much--but also seemed to have sore hands a lot of the day. She has them clenched tightly and they get very hot and sweaty, and she has more trouble holding objects. (I had to feed her part of her dinner---and she also had trouble climbing in and out of the car earlier in the afternoon.) Sometimes it will be one hand and not the other. It's a bit better now--enough that she can pick up potato chips;-), but will get her into a warm bath tonight and see if it helps.

On Friday I heard back from the director of the school I originally had wanted Xian to attend before she got sick. We had a good chat and I shared some of the complexity of her condition, the changing diagnoses that no one can agree on etc., and she said that they have space in their afternoon Kindergarten (our preference, given Xian's at her worst in the morning) and she's willing to do the legwork to get an assistant in place before the start of the school year. (The director is a former Ministry of Education bureacrat and if there's anyone who knows how to get something in place, she's the one -- as I shared with her what's now being investigated in terms of Lyme disease, her comment was, "Well if it is, someone in Alberta gov't needs to hear about what's happened.") So, the plan is that Xian will begin there, with support, and we'll review in a month to make sure it's working for her and the best option in terms of whatever needs she has at that point. After my conversation with the speech therapist at Xian's preschool program at the Glenrose (who was telling me we need to find a special program---and get her wait listed etc., and perhaps not start her in K. in the fall until a space appears), I started thinking about what they've seen in that program (two afternoons a week) -- Xian's been very quiet and nonverbal there, though will speak to the adults. But, in the program the rest of the kids are boys (7 of them), a number of them have their own speech/communication issues and the others have social communication/behaviour issues -- so not kids who are going to elicit conversation from Xian, although she certainly smiles and makes eye contact and will play alongside them. When I contrast that with what generally happens after her program (we leave to pick up Rachel at daycare where they are usually playing in the playground)--normally she ends up pulling littler kids in the wagon, or playing chase/tag games with the kids her age, or getting involved in something because her old friends engage her--I have some doubts about the benefits of a segregated classroom. And, while she certainly has speech issues a lot of the time -- the lucid periods she has seem to indicate that her speech is still intact, just not really accessible to her all the time. So, not really sure that lots of speech therapy would be the answer, if what's going on (Lyme, or whatever) is the real cause of the problem. I contacted a friend who is the head of the SLP program on campus to get a bit of a second opinion--and she agrees (and she also volunteered to see if she can find anything about speech/language issues and Lyme disease---so it'll be interesting to see what comes up, and if there are ideas that might work for Xian). I figure that a) if Xian does have Lyme and begins treatment soon that she may be in a very different state come September, or b) even if she doesn't, she's made gradual improvements since her very low point in February, so that whatever is going on she does seem to be fighting it off gradually--and so she could improve regardless and c) a month in a regular classroom, with support will probably provide a lot more useful information about what's actually going on, including the fluctuations, if she does end up needing a special placement---the problem with most of her assessments is that they can't be taken as "typical" for her, because there's really very little that is constant. A number of Xian's good friends from daycare will be in the same Kindergarten and I think that familiarity is very important to her now, given that her memory is patchy. Hopefully all will work out, but it seems a much better idea than running around frantically trying to find nonexistent special placements without knowledge of their programs---the only spaces I could find in the calls I made were for preschool programs rather than Kindergarten. Now if someone was giving me a "for sure" diagnosis with any sort of proof it would be a different story, but we're still in the realm of everyone waiting for someone else to come up with one and in the meantime using small windows of observation to come up with something just for the sake of providing a label.

Will be trying to contact Xian's ped's office next week to see if her lab results are in and if they'll give me copies to take with me. I can bet they'll find some way to prevent me having them right away---either because no one there will understand them and will want to consult someone else, or if there are positives they'll want us to have an appointment first (but none will be available for weeks), or no one will be able to get someone to consent to give them to me, or....I'm sure I could have a contest to come up with possible reasons! But we'll see, maybe I'm just getting cynical. Good to know that the Seattle doctor can access them, so at least I should find out the results through her---they are supposed to be faxing them, I think? I just hope that they are positive and clearly so---weird to want to see something show up, but Lyme is at least a treatable option.

Thursday, June 12, 2008

An Appointment

We have some positive news -- and since I got it have been too darned busy to post, what with booking flights etc. I contacted the Seattle Lyme doctor (she's a also a pediatric Lyme specialist and worked for many years in Connecticut, or 'ground zero' for Lyme). When she called me back she wanted to know why I suspected Lyme -- after giving her the summary version of the long story (I'm getting pretty good at that by now---the usual response of all Xian's specialists is normally, "That's very strange," or even to question my memory/interpretation/observations with skepticism.). Well, by the time I got to the end of it, she said that Xian's case was pretty urgent and she needed to see her as soon as possible -- we have an appointment on the 24th! (I'd heard she was booking into late July, so had sort of expected that---but sooner is much, much better.) I've also faxed a letter to the lab requesting them to send her a copy of the test results once they are available, so that's another big relief. My worry has been that a) Xian's pediatricians won't have any idea how to interpret the results and so won't give them over to me directly until they consult with someone and b) if they turn out to be at all positive they will get "infectious diseases" involved (and they've refused to treat in positive cases where the provincial test was negative) and c) if infectious diseases get involved we will first wait for an appointment, and then be required to have the ELISA test (which apparently rarely picks up Lyme in Alberta) and that test can take weeks to come back. The doctor Xian is going to see will treat based on the clinical picture, even if test results are inconclusive, and then retest. From what I am reading, Lyme can be a sneaky bacteria and go deep into muscles and organs and not be picked up in blood depending on the stage of the disease. I figure that there's really nothing to be lost from at least an initial course of treatment to see what happens, and potentially lots to be gained. (And heck, if Rachel can go on heavy antibiotics for nine months--Izoniazid--for mere exposure to TB, with no clinic signs, for a 10% of conversion to active TB, treating initially seems like a no brainer, at the very least to be able to definitely rule it out as a cause of Xian's issues!)

Have been reading about Amy Tan and Lyme disease -- as my mother has commented, her experience sounds quite similar to Xian's, only Xian's been unable to express what's going on and Amy Tan is an adult with keen communication abilities.

Oh, and remember, way back, my mention of seeing "Munchausen's by Proxy" in Xian's hospital chart. Well, this is quite interesting, especially given that the label has turned up in both Xian's chart and Ed's (Janet Sterling's son).

Yesterday the Glenrose team provided Xian with a new diagnosis (while admitting it's mostly to deal with school placement/school services and descriptive rather than diagnostic) -- "severe language and communication impairment". So, we've gone from "sensory integration disorder and neurological degenerative condition of unknown origin" to "childhood disintegration disorder/late onset autism", to "Severe behaviour disorder and suspected psychiatric/affective disorder", back to the autism diagnosis, and now this one. The Glenrose folks know I'm taking her to Seattle for treatment (hopefully that's what will be recommended!) and while I think they are still somewhat skeptical they aren't sharing that with me directly, and they do acknowledge that Xian may be in a very different condition come September. Because they've seen her improve quite a lot from their first encounter (Xian was coming off of her really big decline when they first met her), at least they acknowledge that things are still fluctuating. The frustrating part, though, is that I never get the same story around getting Xian into kindergarten -- first told, yes, Xian can attend the rehab kindergarten (but then she improved too much), then told, "try to find a school and we'll help hook you up with services, or maybe she can start at the Glenrose and transition", to now, "call the specialized placement schools and bring a list to our meeting next week". Um, yeah -- right now I'm scrambling to get our travel plans confirmed etc., and we have the usual series of appointments before then (Xian's urologist, Rachel's audiology and limb difference group)---do you think they might have possibly given me the brochure a month ago? In this province, K isn't mandated, which also complicates matters---basically no one really cares if she doesn't have a placement for September! So much for living in the 'wealthy' province.... I did mention to the SLP that since nothing at all is confirmed for Xian in terms of services and programing or schooling I'm not able to return to work and am on leave without pay, so maybe they will get the piece that the lack of supports, lack of diagnosis, and the general 'failure' of the system has some profound impacts. (And of course, Xian's been the last kid tested in her program---though from the start I've said we need to know what's possible for her in terms of school programs as soon as possible, and I need at least a functional diagnosis to bring to a school! ARGH!!) least we seem to be moving within the medical realm.

Going to try to add a picture from Victoria...hope it works!

Monday, June 9, 2008

Tick tock, tick tock....

Well, I imagine that by now Xian's tests might be complete---though I don't know how long such things take. Wish I had some psychic skills, or had dreams like the woman on "Medium". (The best I've done is dream Xian and I were at an unfamiliar doctor's office and were getting dates for IV treatment...which is probably just from reading about such things.) Hopefully I'll be able to get a copy of the results by the end of next week. I did get a couple of interesting pieces of information late last week -- through a couple of contacts I found out about a Seattle Lyme specialist who also apparently studied under one of the foremost pediatric Lyme specialists. Also heard about a Toronto Infectious Diseases specialist who sees Lyme patients. Both doctors seem to be well regarded from what I've been able to check out. One of the women I spoke with (she has a son with Lyme -- they moved here from BC) suggested I might contact the Seattle doctor and get her to interpret the test results. She's been going to her every two months, which is what is required for the prescriptions. So, debating our options, in the case that Xian's results are positive and we can't get treatment locally right away---from what I've heard, while some people have received local treatment, it's sometimes taken months to get someone who will do it, and then you generally need someone to consult with the local doctor. While I'd certainly push to get local treatment, I also wouldn't want to have Xian wait any longer than she already has. While there would probably be more likelihood of getting medical to cover something if I went to Toronto, any gains there would be offset by the costs of travel and accommodation---Seattle's a lot closer, and closer to family in Victoria or friends in Vancouver. Killing some time during the wait for results by adding to and organizing the document I've put together with the summary of all that's happened to her. Hard to believe this has gone on for so long and that her pediatrician hasn't so much as left a voicemail message for us in months (and I should have received a couple of referrals for appointments, too---there were plans for both girls to see an allergist). Months ago the psychiatrist told me that our case was keeping the pediatrician up at nights---hmmm, guess she's past the insomnia!

Friday, June 6, 2008

10 business days

Last night during dinner the phone rang -- it was an 800 number which usually means someone doing a political poll or some sort of person I don't usually want to talk to. I picked up in a hurry, though, when I heard "It's ___ calling from IGeneX." Anyway, the pleasant young woman was calling to confirm that Xian's blood work had arrived and they were ready to start running the tests and just needed approval on the amount they are charging on my credit card. I figure it will be money well spent if it provides us with some clues as to Xian's condition. The woman said that the results should be back at the doctor's office in 10 working days (from yesterday). Which is the 19th. I can already tell it's going to be a long couple of weeks. (There's only so much time that one can spend on willing particular test results and reading up on Lyme testing!) Well, good time to try to clean up some of the chaos in the house, getting my winter tires off, and of course, look into what our options are for medical treatment if she does have Lyme. Apparently Lyme treatment is hard to come by in Alberta and in most of Western Canada, though there are a few doctors who will treat based on consultation with other experts.

Yesterday Xian was feeling crummy most of the day and wouldn't eat except for a couple of small snacks, but she did manage to fall asleep before 10 and was quite relaxed for the hours preceding sleep (sometimes she'll get quite restless, especially when she's having the heavy sweats). Last night for the first time in many nights she didn't have the night sweats and she woke up quite "clear" as well and with a big appetite and quite playful with Rachel. Even a bit more talkative than usual---normally she's pretty silent and foggy when she first gets up, or, worse will be very irritable and obviously not feeling good. Anyway, nice to see after having a week when a lot of her symptoms seemed to be worsening again---when that starts to happen I worry that she'll hit another big decline like she did in February.

So, nine more "working days" to go -- or, 14 days total....not that I'm counting or anything!

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:

Monday, June 2, 2008

Breaking the Spell

There’s been a lot of conversation at our house lately about “bad spells”. Rachel says frequently, “It’s just the bad spell,” when Xian behaves erratically or is having a bout of crying/irritability. Xian’s been talking about bad spells, too – saying “I want to break the spell,” or talking about it in her play. Last night when she was struggling to fall asleep her hands became characters (she named each hand, and one had a deep voice, too---using “voices” is another old skill that’s coming back) trying to get rid of a bad spell. Xian has mentioned more than a few times that she wants a blood test to break the spell---we are heading to the lab this morning for the Lyme test (as well as one for celiac disease---since Xian’s become gluten intolerant it’s worth ruling out) and it’s certainly my hope that we’ll get some information “about the spell”. We’ll also get Xian’s repeat abdominal x-ray while we’re at the hospital---will be curious to see what shows up there, as her belly is quite distended these days, though she’s certainly not constipated. (Yeah, I know, too much information!)

Xian’s keen interest in Disney movies has returned---she’s asking to see both “old favourites” (Beauty and the Beast, Cinderella, Mulan) and also now interested in some that were a bit too mature for her previously (e.g. The Little Mermaid – though we still need to fast forward past the seawitch scenes!).With all the viewings of these movies I can’t help but notice how often there’s mention of spells being cast and then broken, so it’s not surprising it’s become “the explanation” for what’s going on with Xian, at least from the kids’ perspective. (Heck, talking about “the bad spell” is a lot simple than the full sentence or two other explanations require, given that we don’t have anything remotely resembling a diagnosis.) And, when Xian’s symptoms are considered they really do seem spell-like – periods when she’s unable to break out of the fog that descends on her, periods when something (pain, strange sensations) grips her so firmly that all she can do is scream and fight it off. Now of course I don’t believe that Xian’s condition is caused by an encounter with a bad witch (something Xian’s talked about), but it’s looking more like an encounter with a nasty microbe or bacteria or some sort of parasite. Xian’s still having heavy night sweats and times during the day where she spikes a little fever and her colour suddenly drains. Really hoping that some of today’s results will help her doctors to pay some attention. I did send a video clip of her playing with Rachel (imaginary play with the doctor kit) to her psychiatrist, plus the name of the psychiatrist who treated the boy with Lyme, and just really hope that I’m taken seriously and not dismissed as being in denial of the autism diagnosis. If Xian really seemed autistic all of the time, I’d certainly be open to it, but I simply don’t think that she fits the diagnostic criteria. Hopefully Xian’s psychiatrist will see that, as well, but by now I’ve learned to keep my expectations pretty low when it comes to her doctors.

Thursday, May 29, 2008

The testing zone

Not too much to report. I've managed to figure out how to fill out the IGeneX form for Xian's Lyme test, and after a few phone calls today with Xian's clinic we've got someone who'll sign it. Before we left for Victoria I called and spoke with the nurse -- Rachel had hand/foot/mouth (poor kid had a mouth full of blisters, though at least she recovered quickly) and I wanted to book an appointment to get Xian's Lyme form signed as well as find out if she actually ever was tested for Lyme using the provincial lab, even though the provincial results haven't shown positives in the cases of the other local kids. So, last week the nurse said just to call and we could drop in and get someone to sign the form. Today, after she spoke with the pediatrician in the meantime (who doesn't remember a Lyme test being done, but no one has had time to actually look through Xian's files -- it always seems like I am asking them to run a marathon or something when I am asking for information, but they've also been reluctant to pass on a copy of her whole file) the nurse said I'd have to come in on Monday when Xian's pediatrician was going to be in. I said that if that was the case I'd just go to a walk in clinic -- but just heard back that the other ped who has helped with Xian's case is able to do it. The Lyme test needs to be done on a Monday in order to get tested "fresh" after travelling to the lab--they won't test samples that arrive later than Weds. and the sample needs to get shipped to California. I figure Xian should probably also get the 'local' Lyme test, but since even people with Lyme confirmed in Europe or other provinces don't test positive I won't be holding my breath. I don't know if she was tested for Lyme in her lumbar puncture, but since they reserved extra vials for later testing it seems like something that could be ordered if one of her doctors chose to do that.

On a happier note, we had a great time in Victoria -- everyone there noticed how much better Xian is from when they saw her in early March. She was thrilled to see my sister and went running to her and leapt into her arms. She still had some ups and downs there and one spectacular 'episode' but it was probably fortunate it happened there as my mom made the connection between the event and Xian's breakfast of oatmeal -- she also remembered a couple of oatmeal triggered screaming bouts when she was here. While it's been clear for a while that Xian's reacting to wheat, making the gluten connection seems to really be helping and I think she's actually sensitive to very tiny amounts (such as breaded coatings on french fries). Since then, and avoiding gluten and high fructose foods she's not had any of the big episodes. I think there may be a few other things she's sensitive to, as sticking with very plain non processed foods does seem to work best right now. She's also started asking for "pink medicine" (tylenol) and seems even clearer about when she's having pain and can point to what's hurting her.

In Victoria she was the most interactive in terms of play that she's been for months. She set up a "doctor's examining bed" on the end of my mother's treadmill (which she folds up when the kids are there) got the play medical kit, lay down and called for Rachel to come and examine her! She also took on the doctor role (and I have to say the kid really does know how to use all the instruments, after her own experiences). I made sure to take some video clips and will be sending those along to Xian's psychiatrist before her appointment next week. Aside from a few language difficulties (Xian still hunts for the right word and often comes up with related by incorrect words) she was playing much like her old self---interactive, assertive, funny. Hopefully it'll help lay the autism mis-diagnosis to rest and maybe get her doctors refocused on trying to find what's actually going on. As you can see in the picture below, Xian was back onto swings and playground equipment -- though she still fluctuates We went to the Beacon Hill playground and there was a band playing outdoors -- the sound really bothered her and she wasn't able to do anything except cover her ears. The other thing we noticed was that while she was able to identify people by going to them if you asked her to ("Go get Grampa," etc.) and she obviously knew and responded to them, unlike March when she was in such a fog that there wasn't even a glimmer of recognition most of the time, she rarely was able to come up with anyone's actual name. Everyone (including my father) was called "Mommy". She also does this with her teachers in her program -- can't remember anyone's name for very long. Yesterday we were looking at the photos my sister sent. I pointed to Rachel and asked her to tell me who she was and she said, "YueYue" which was Rachel's Chinese name and what we called her for the first few months after she was adopted. At her program yesterday she also signed "more" -- something she used to do as a toddler, and hasn't done it since she was probably about two and a half. So, odd little pockets of information from long ago seem to be resurfacing, while she will forget more immediate information. Last week in her program she wrote the first three letters of her name, though not in sequence---I asked the woman who was working with her yesterday if she'd given her some help and she said she hadn't. Before Xian got sick she was able to write her name correctly and using upper and lower case letters -- she started "losing" letters and sequencing and moving to a shakier upper case in the middle of last fall, and then lost all of her writing ability. So, good to see it beginning to emerge again. It was a bit funny, though, as I commented on it, a number of the parents observing their kids were commenting that their 4 and 5 year old boys couldn't write their names at all except for maybe an initial, so while Xian's writing isn't 'back to normal' for her, at least she's in a fairly "kindergarten" realm again. They've been starting to assess some of the kids in Xian's program -- and are trying to track down Xian's neuropsych testing report, though it's pretty invalid by now (it was done in early March when she wasn't speaking much, couldn't hold a pencil etc.). They keep asking me if I've received any further results -- which I am not expecting to -- so it seems that they are just as puzzled as everyone else, though at least are observing Xian's 'quirks' and trying to see which ones respond to behaviour strategies. Seems rather 'hit and miss' --- eventually she'll comply but I often think it's when she's stopped having whatever weird sensory thing going on rather than it being the last strategy used. They've been trying to work on her tendency to plug her ears during music/sound events, and some of the 'eye' issues (shutting her eyes to block out stimulation), and while they know that she does have control over what she's doing, they also admit they don't know what's going on in terms of background causes. I'm happy to see others trying approaches I've tried and seeing that things tend to work pretty much the same as with me, I don't feel too bad about my attempts! So far they still seem a bit stumped about what should happen for her in terms of kindergarten---which probably increases the likelihood she can begin the school year in one of their treatment programs. Her memory and language issues are being documented, so hopefully that will lead to getting some speech and language support.

Have been getting a few leads on Lyme doctors in anticipation that we may run into difficulty getting treatment here if she does test positive. And, got the name of the psychiatrist who treated the local boy (he ended up being the one to prescribe the antibiotics), so will be going to Xian's appointment with hers next week well prepared. I figure if she can prescribe nasty antipsychotics without even blinking, maybe she'd be open to prescribing something else....hard to say. I'm busy printing out articles on neuropsychiatric manifestations of Lyme to bring along, so at least she'll have something to read!