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.

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.

http://www.amytan.net/LymeDisease.aspx
http://www.canlyme.com/amy.html

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).

http://www.ilads.org/sherr6.html

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!!)

Anyway....at least we seem to be moving within the medical realm.

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

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!

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!

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:
http://youtube.com/watch?v=sxWgS0XLVqw

Excerpt #1 - Patients Abandoned:
http://youtube.com/watch?v=WuzPJ_C4Ijs

Excerpt #2 - The Perfect Storm of Diseases:
http://youtube.com/watch?v=cwVj_IKP8mY

Excerpt #3 - The Price of Misdiagnosis:
http://youtube.com/watch?v=W-nJDHVD8QQ

Excerpt #4 - Physicians Under Attack:
http://youtube.com/watch?v=X_jwFVkXWtc

Excerpt #5 - Lyme Journey:
http://youtube.com/watch?v=WMuVy78fdC8

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.

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!