What seems to be one of the big problems in relation to finding a diagnosis for Xian, and some sort of treatment, if that's possible, is her complex and strange collection of symptoms. The preceding posts describe her early symptoms (mainly neurological) and so I don't end up with lots of suggestions about therapies for sensory integration therapy or other primarily neuro aimed approaches--which were things I considered way back when--to the extent that she was on a wait list to see a private OT,--I figure I should attempt to document what's happened with her symptoms since then.
Note: A warning to anyone trying to be helpful---not that I don't appreciate all the good thoughts sent our way (thoughts, prayers, stuffed animal sacrifices and anything that might help from a distance all welcome!)---if I hear of one more alternative medicine that will 'cure' Xian I'll simply have to throw myself under a bus. Immediately. While I know people mean well, right now my efforts are focused on getting a diagnosis for Xian's specific situation. Once we know what she actually has going on in her body, then I'll consider various forms of treatment, both medical model and not. And indeed, she's had some 'comfort' treatments via Reiki and healing touch, and those are effective in calming her and making her feel a bit better.
So....another list....
Early symptoms: (Aug. - Nov.) -- mostly mentioned in previous posts (feel free to skip!)
short term memory loss and confusion, staring spells, unexplained laughing fits, tantrums and much more irritability than usual, severe insomnia, urinary issues (inability to 'go', and lack of frequency), severe auditory sensitivities, some sensitivities to light/touch, hyperactivity, food aversions (to protein---meats, dairy, beans and specific higher protein meals), personality seeming just a bit 'off'
December-January: (additional symptoms, the only one of the previous list that disappeared completely was the hyperactivity as it changed to lethargy/fatigue)
loss of bladder control when having staring spells or periods of blankness (not frequent, but they still happen occasionally), language changes (times when her speech is slurred or she couldn't find the right word, or she would repeat a strange sentence---like "I forgot to call you back!" and became upset because we didn't understand.), swallowing difficulties. Started showing periods of clumsiness, self-care skills declined (needed help with dressing and feeding, though it fluctuated and still does), periods of lethargy and being very disconnected/unresponsive, especially in the mornings, disintegration of her teeth first noticed (all her front incisors started developing ridges and chips, some appeared overnight when they'd been perfectly fine the day before), began having severe hallucinations/tantrums around two hours after higher protein meals. I started noticing that she was getting a bit 'hairier' (previously a very smooth skinned kid with a high hairline/big forehead---often admired by Chinese friends), showing some black 'peach fuzz' on her upper back, legs, and around the edges of her hairline.
February
Decline in fine motor skills, lost interest/ability in drawing and colouring---all throughout her illness, previously, though she was not always coherent or lucid she was able to create detailed and expressive drawings---her drawings would also show evidence of neurological fluctuations, so that they got shakier and unclear and then would be 'back to normal', sometimes over a 60 minute period, or less. (And this was observed in a session with the PT/OT team, as well as well documented in samples I collected.) Other difficulties with her hands appeared---sometimes seemed to have trouble unclenching them (and also got skin irritations from her fingernails digging in if I didn't cut them soon enough---almost daily she asks me to cut her nails) and other times her hands had a lack of tone, and yet other times she could do things like remove the foil wrapper from a chocolate.
March---the latest symptoms....
Although I really, really hoped that I was just imagining things---last week one of the doctors in Xian's clinic confirmed her signs of precocious puberty. As if the kid didn't have enough to deal with!! Everyone was remarking on her sudden height surge in late December/early January and now I am told that this can be one of the things that occurs first. In more 'normal' situations, little girls with precocious puberty (and barely five years old is really on the abnormally younger end of things---most of the studies I've been looking at address 6-8 year olds) can be treated with medication to halt or reverse it. The biggest issue related to early puberty seems to be that it will halt bone growth and have repercussions for adult height (probably not the worst thing on my 'what to worry about' list!). So, we've now got a blood endocrine panel to bring with us to the metabolic specialist. I really hope this is not going to mean that now she'll be bounced off to some other specialist and we'll wait for ages for the next appointment.
When Xian was in hospital in December, she had an MRI to check for a particular type of brain tumor that can cause similar neuro symptoms and is also known to cause precocious puberty---the MRI was clear, then, or so everyone said. Have to wonder if maybe they've been looking in the wrong part of her body. One other theory the group of psychiatrists suggested--in the same meeting where they 'decided' her condition was a form of PDD (ruled out later)--was that she could have a rare hormone secreting tumor somewhere in her body. While I probably should be a lot more freaked out right now, all I can think now is that she has some observable physical signs, and that something is bound to turn up in her endocrine blood work. I just hope it's something that will be enough to bonk someone on the head with an obvious direction for a diagnosis...and treatment, and we won't get something like, "oh, well, this sort of thing can happen in kids with undiagnosed neurological problems, deteriorating teeth and protein reactions---see you in six months!" At this stage, I've had multiple experiences with various new symptoms where I've figured, finally, this has to be 'the one' to turn things around--only to have whatever is going on minimized or glossed over or justified as something else. (nd yes, at various points all these things: the neurological problems, the deteriorating teeth and the protein reactions have all been discounted---at least until the point where they have become more and more apparent.
The other very not nice new symptom is that now she is losing bowel control when she sleeps. The pediatrician we saw last week couldn't make sense of it, just said it was odd and of course related to everything else going on---though she was fairly sympathetic (but she did say good things about the metabolic specialist in terms of possibly someone being able to untangle things.) Xian's not doing it every night, but enough for me to see it as a new and scary pattern (three times in the past 10 days, and once a few weeks earlier). She has complete control during the daytime and hasn't anything similar since she was an 18 month old with the flu, so I really wonder what's going on in her body during sleep. (In hospital she did have a brief EEG when she was asleep, but they cancelled her 24 hour video EEG monitoring, so I have to wonder...).
She's had a tendency to have sweatier hands/feet (she goes through several pairs of socks per day because of it) since she got ill, and sweats quite profusely at night, even when not covered---noticeable since mid fall, but recently I've noticed that her feet/hands/back are now cold/clammy and sweaty (rather than warm and sweaty). In the middle of the night, under the duvet and snuggling next to me her back will be cold and very damp. She's had periods of sudden flushing/sweating after eating (especially during the reactions she'll have to proteins, but at other times, too, in a milder way). Seems like even her internal 'thermostat' is not functioning the way it used to. She used to be typically, a warm, dry kid who'd sweat buckets only when playing out in the hot weather or if she was very active---neither is happening now.
And that's pretty much where we are now---I'm sure I've missed a few things (ah, like her chocolate/sugar cravings---she asks all day and previously wasn't really a big fanatic about them, though she always liked the odd gummy bear). I really hope she doesn't have to 'collect' more dramatic symptoms in order for the medical profession to figure things out. I have dreams of waking up to see her mutating into animals, aliens, and worse. Hmmm, now there's a theory no one has suggested---that she was part of an alien abduction when she was living in her orphanage and the aliens implanted something to make her turn into 'one of their own' and they've activated the process. Nah, I like Rachel and Xian's "she was cast a bad spell by a wicked witch" hypothesis a lot better. Rachel said today in the car, with a big sigh, "I really, really want someone to break the spell and everything be back to normal." It's been very hard on her lately, with Xian not showing many glimpses of her former self, and I think Rachel's quite lonely when she's at home with us on our own. We had a friend and her almost three year old come over this morning and it was great to see Rachel up to all the sorts of activities and antics that she would normally have done with Xian. Xian, while unable to join in, also watched the little girls with a big sparkle in her eyes. Peripheral participation seems to be all she can manage most days, aside from occasional bursts of energy at night, when sometimes she can manage a bit of a jump on the bed and a romp with Rachel for a few minutes.
Monday, March 31, 2008
Sunday, March 30, 2008
A List
Of conditions, diseases and other things doctors have previously considered:
Seizure disorders, Rett's Syndrome, Fragile X, brain tumours, post-Measles encephalitis, fungal infections, parasites, numerous metabolic issues, thyroid issues, lead toxicity, a variety of other sorts of toxic exposures, allergies
The most infuriating:
Munchausen's by Proxy
I wouldn't have believed it except that I read Xian's chart during waits for various appointments in hospital. Um, yeah, a busy working single mom of two wants to make her child sick and have to scramble for care for the other child, risk loss of income and deal with overwhelming stress.... That also came at the same time they told me they would be checking for accidental ingestion of medications like ASA or Tylenol, and "Not anything like illegal drugs or anything." Um, right....so that page of blood levels checking for cocaine, heroin, and the like was just something they wanted to put into the chart to mess with my mind? (On the show House they always say, "The patients always lie..." -- looks like doctors have that angle covered pretty well, too.)
The one that has caused us many delays in later investigations:
Just before she was discharged from hospital, at the end of December, Xian's pediatrician, a rehab doctor (who is not a pediatric specialist) and a group of psychiatrists decided that Xian most likely had some form of late onset autism or PDD (pervasive developmental disorder -- the form called "childhood disintegrative disorder"). The fact that she didn't seem "autistic" all of the time (she was very unresponsive mainly in the mornings, when those folks tended to do their rounds, but always has tended to improve as the day goes on, getting most clear in the evenings--something I continued to communicate, without much impact, obviously) didn't seem to sway them. Although I have a fair bit of experience with autistic kids (from my former teaching career) and could say with some authority that it didn't look like any sort of autism I'd seen, my comments got a condescending response that I was "Just looking for things I wanted to see" and "Avoiding the truth." Xian was discharged from hospital, plans for 24 hour video EEG monitoring was stopped and attempts to get her to see most other specialists seemed to slow. While in the meeting when they "announced" the diagnosis, they mentioned trying to get her seen by Dr. G, one of the experienced local autism experts (a developmental pediatrician) who they spoke about almost as a god. I was happy to have that happen, knowing it was the way to have this diagnosis definitively ruled out. He turned out to be a lovely man, who interacted with Xian, observed her interactions in relation to me and things like eye contact, and did a few simple tests after which he told me he was 99 percent certain that she didn't have anything on the autism spectrum, including a few of the rarer conditions that the other doctors had mentioned. He was the first person to take my food observations seriously (at that point I wasn't quite sure what was going on, but knew that she improved on days she ate less and had really sparked up the few times she'd been on clear fluids--I mentioned to him that she was fairly lucid/alert that day and curiously had eaten very little) and he gave me some of the suggestions that led to me figuring out what seems to be her food problem. He wondered if something had been overlooked or missed in her labs (and that's been mentioned enough since then that I think it's a good likelihood) or if having spent her first 15 months in a poor orphanage meant that she is a sort of Darwinian "survival of the fittest" sorts of kids and is fighting off something serious in a way that's rarely seen. (I agree wholeheartedly with that theory---many of her personality changes are reminiscent of things I've seen when she was in pain and/or feeling unwell, and she's always been a very strong, feisty "fighter" of a kid in terms of any setbacks. Also, her condition seems to regularly alter her pain threshold, so that she doesn't seem to feel pain in the same way she used to, at times.)
When we returned to the pediatrician with the news--our appointment happened prior to anyone seeing Dr. G's report--suddenly "the god" might not be such an expert after all and it was suggested we see a different autism expert, though she backed down when I challenged them and reminded her that I'm not unfamiliar with autism. But it did seem to put a wrench in the works in terms of getting anything to happen very quickly after that, and at that point I heard that neurology had "dismissed her case." (Though we now have a follow up appointment.)
The "well we can't think of anything else so let's pin it on adoption!" angle:
At Xian's last appointment with her pediatrician, she mentioned that the psychiatrist that has seen Xian had consulted with another senior psych who generally sees the 'under five' set. Note that "senior psych" never saw Xian and never spoke with me... The latest "theory" is that our trip to China caused some sort of path towards psychosis/disintegration caused by....drum roll, please: "trauma related to Xian's early life in the orphanage and her adoption!!! " And, so what's the explanation for the fact that she was fine for months before her first symptoms showed....? Or that one of her best experiences during our trip was playing with the nannies at Rachel's orphanage...? (I've always figured that, while she was certainly underfed and understimulated while in her SWI, she held the nannies in fond regard and they were fond of her as well---this was evident when I met them and received her, and in her grief stricken cries for 'ayi! ayi! ayi!' those first days with me, and her tendency to gravitate to Chinese women who resemble her ayis.) In fact, her trip seemed to answer some of her questions about her early life and also to give her a bit more of a sense of herself as a Chinese girl who was born in China---by the end of our trip, the girl who was normally a bit reserved with strangers was gleefully playing with market sellers and approaching people in public like they were long lost friends. So, nope, don't buy that one!
I'm gearing up for another appointment with Xian's psychiatrist this week---and wonder how Xian's new symptoms (more on that, later) which are highly physical and not dismissable (is that a word?) will get explained away in that scenario. Now, as I've mentioned before, I do think the trip may have played a role in terms of physical stresses on her body after her encounter with whatever nasty microbe she ingested in the bathwater or maybe at the buffet---the rest of us were fine, however, and she'd had Dukoral prior to the trip so that seems a bit less likely, and towards the end of our trip I got a bit relaxed about her bathtime and stopped being quite so vigilant (since I was usually washing out their clothes in the sink). If she did there what she used to do at home, the bathwater was the culprit. She's a good traveller and has always like airplanes and hotels. Truthfully, during our stay in Qinghai, she was the one thrilled about "Our hotel home" as she called it, while my mother and I both gritted our teeth and tried to pretend we were camping. She was pleased as punch to finally get her sister, and while she did have her bad moments, they were mostly linked to jet lag, big noisy crowds (and I'm talking the kind where you can't have a conversation), a "scary" mannequin in the hotel, and a bit of upset when we received Rachel in the Civil Affairs office (which I suspect brought back some vague memories of her own Civil Affairs experience). She had a lot of fun with Chinese TV, playing with Grandma and "doing art projects", taking photographs of her experience with disposable cameras, and watching DVDs of her favourite Disney movies in Chinese.
Seizure disorders, Rett's Syndrome, Fragile X, brain tumours, post-Measles encephalitis, fungal infections, parasites, numerous metabolic issues, thyroid issues, lead toxicity, a variety of other sorts of toxic exposures, allergies
The most infuriating:
Munchausen's by Proxy
I wouldn't have believed it except that I read Xian's chart during waits for various appointments in hospital. Um, yeah, a busy working single mom of two wants to make her child sick and have to scramble for care for the other child, risk loss of income and deal with overwhelming stress.... That also came at the same time they told me they would be checking for accidental ingestion of medications like ASA or Tylenol, and "Not anything like illegal drugs or anything." Um, right....so that page of blood levels checking for cocaine, heroin, and the like was just something they wanted to put into the chart to mess with my mind? (On the show House they always say, "The patients always lie..." -- looks like doctors have that angle covered pretty well, too.)
The one that has caused us many delays in later investigations:
Just before she was discharged from hospital, at the end of December, Xian's pediatrician, a rehab doctor (who is not a pediatric specialist) and a group of psychiatrists decided that Xian most likely had some form of late onset autism or PDD (pervasive developmental disorder -- the form called "childhood disintegrative disorder"). The fact that she didn't seem "autistic" all of the time (she was very unresponsive mainly in the mornings, when those folks tended to do their rounds, but always has tended to improve as the day goes on, getting most clear in the evenings--something I continued to communicate, without much impact, obviously) didn't seem to sway them. Although I have a fair bit of experience with autistic kids (from my former teaching career) and could say with some authority that it didn't look like any sort of autism I'd seen, my comments got a condescending response that I was "Just looking for things I wanted to see" and "Avoiding the truth." Xian was discharged from hospital, plans for 24 hour video EEG monitoring was stopped and attempts to get her to see most other specialists seemed to slow. While in the meeting when they "announced" the diagnosis, they mentioned trying to get her seen by Dr. G, one of the experienced local autism experts (a developmental pediatrician) who they spoke about almost as a god. I was happy to have that happen, knowing it was the way to have this diagnosis definitively ruled out. He turned out to be a lovely man, who interacted with Xian, observed her interactions in relation to me and things like eye contact, and did a few simple tests after which he told me he was 99 percent certain that she didn't have anything on the autism spectrum, including a few of the rarer conditions that the other doctors had mentioned. He was the first person to take my food observations seriously (at that point I wasn't quite sure what was going on, but knew that she improved on days she ate less and had really sparked up the few times she'd been on clear fluids--I mentioned to him that she was fairly lucid/alert that day and curiously had eaten very little) and he gave me some of the suggestions that led to me figuring out what seems to be her food problem. He wondered if something had been overlooked or missed in her labs (and that's been mentioned enough since then that I think it's a good likelihood) or if having spent her first 15 months in a poor orphanage meant that she is a sort of Darwinian "survival of the fittest" sorts of kids and is fighting off something serious in a way that's rarely seen. (I agree wholeheartedly with that theory---many of her personality changes are reminiscent of things I've seen when she was in pain and/or feeling unwell, and she's always been a very strong, feisty "fighter" of a kid in terms of any setbacks. Also, her condition seems to regularly alter her pain threshold, so that she doesn't seem to feel pain in the same way she used to, at times.)
When we returned to the pediatrician with the news--our appointment happened prior to anyone seeing Dr. G's report--suddenly "the god" might not be such an expert after all and it was suggested we see a different autism expert, though she backed down when I challenged them and reminded her that I'm not unfamiliar with autism. But it did seem to put a wrench in the works in terms of getting anything to happen very quickly after that, and at that point I heard that neurology had "dismissed her case." (Though we now have a follow up appointment.)
The "well we can't think of anything else so let's pin it on adoption!" angle:
At Xian's last appointment with her pediatrician, she mentioned that the psychiatrist that has seen Xian had consulted with another senior psych who generally sees the 'under five' set. Note that "senior psych" never saw Xian and never spoke with me... The latest "theory" is that our trip to China caused some sort of path towards psychosis/disintegration caused by....drum roll, please: "trauma related to Xian's early life in the orphanage and her adoption!!! " And, so what's the explanation for the fact that she was fine for months before her first symptoms showed....? Or that one of her best experiences during our trip was playing with the nannies at Rachel's orphanage...? (I've always figured that, while she was certainly underfed and understimulated while in her SWI, she held the nannies in fond regard and they were fond of her as well---this was evident when I met them and received her, and in her grief stricken cries for 'ayi! ayi! ayi!' those first days with me, and her tendency to gravitate to Chinese women who resemble her ayis.) In fact, her trip seemed to answer some of her questions about her early life and also to give her a bit more of a sense of herself as a Chinese girl who was born in China---by the end of our trip, the girl who was normally a bit reserved with strangers was gleefully playing with market sellers and approaching people in public like they were long lost friends. So, nope, don't buy that one!
I'm gearing up for another appointment with Xian's psychiatrist this week---and wonder how Xian's new symptoms (more on that, later) which are highly physical and not dismissable (is that a word?) will get explained away in that scenario. Now, as I've mentioned before, I do think the trip may have played a role in terms of physical stresses on her body after her encounter with whatever nasty microbe she ingested in the bathwater or maybe at the buffet---the rest of us were fine, however, and she'd had Dukoral prior to the trip so that seems a bit less likely, and towards the end of our trip I got a bit relaxed about her bathtime and stopped being quite so vigilant (since I was usually washing out their clothes in the sink). If she did there what she used to do at home, the bathwater was the culprit. She's a good traveller and has always like airplanes and hotels. Truthfully, during our stay in Qinghai, she was the one thrilled about "Our hotel home" as she called it, while my mother and I both gritted our teeth and tried to pretend we were camping. She was pleased as punch to finally get her sister, and while she did have her bad moments, they were mostly linked to jet lag, big noisy crowds (and I'm talking the kind where you can't have a conversation), a "scary" mannequin in the hotel, and a bit of upset when we received Rachel in the Civil Affairs office (which I suspect brought back some vague memories of her own Civil Affairs experience). She had a lot of fun with Chinese TV, playing with Grandma and "doing art projects", taking photographs of her experience with disposable cameras, and watching DVDs of her favourite Disney movies in Chinese.
Timelines and early signs
In our numerous conversations with doctors and specialists I'm often asked when I first noticed something going on, as well as sometimes being asked when the last point was that she was fully unaffected by her condition. While it seems like a fairly simply question, it gets tricky. When did I first get the first sense something was very wrong? Sometime in early fall, after she'd changed into the new (kindy) room. But looking back, things were well on their way by then. I'd simply explained away what was going on---as maybe a new 'phase' or an odd return of sensory issues she'd long overcome from her orphanage days, and I'd been trying to find a cause for her sudden severe insomnia. I remember posting to the CanadiansAdoptingfromChina group, wondering about ear issues (and she did have big earwax plugs removed at the doctor's office---but it wasn't any kind of 'cure', in fact, having improved hearing made things dreadfully worse). I think she'd been dealing with her early symptoms for a while---probably since some point in August, but a daycare room shift the first week of September meant that she could no longer rely on long term memory of old, established routines and patterns to help her--and she'd probably been covering some lapses for a while in her other room.
Since Rachel was starting daycare for the first time, while I knew Xian seemed unhappy, I was distracted with dealing with Rachel's adjustments and upsets for those first few weeks. When Xian made the room change, for weeks she kept putting her belongings/shoes etc. in the old places and kept returning to her old room (even during the day she'd tend to wander back)---her new teachers interpreted this as 'behaviour' related, but I wondered, as it seemed odd, almost as if she actually couldn't remember her new 'locker' and new places for her shoes and really couldn't remember the new routines and expectations. Short term memory issues are now a documented part of her complex set of symptoms, so I am certain the new room put her into a confusing situation, in addition to missing her old friends and teachers. She started refusing to eat certain meals at 'school' and that too was seen as 'behaviour', though we now know what too much protein does to her. While she'd always had bit of a 'drama queen' personality she'd never been known for long lasting behavior troubles--in the past any 'bad days' at daycare predictably came when she was coming down with something or she'd missed some sleep. Since she was now struggling nightly with insomnia the new troubles could be blamed on sleep, though she seemed weirdly untired when severely sleep deprived (even back then she was having trouble falling asleep before 10, for a kid who used to need her 11.5 hours and dropped liked a stone in the past---currently I am lucky to see her drop before midnight and get maybe 8 hours).
What we noticed earlier, in August, quite uncharacteristic for her, was that during a trip to Victoria she suddenly no longer wanted to go out on any outings, refusing the petting zoo, trips to the store for treats with Grandma, and she started having perplexing temper tantrums, or so it seemed---not in response to any particular event or thing, just times when she'd begin by getting irritable and it would escalate to a wild bout of screaming and thrashing around. While I wasn't keeping track of anything then, I have to wonder if it was the beginning of her later responses to too much protein. Because they tend to happen about 2 hours after eating, it took me a long time to figure out the pattern. The other thing we noticed in Victoria was that she had some little moments when she simply didn't seem to be quite "there", laughing quietly or smiling to herself without being connected to anything surrounding her. In fact, my mother and I joked about it a little, even, not knowing what it would foreshadow. In the beginning, though, she still had plenty of moments when she was still her old self---organizing elaborate craft or drawing projects, doing her "Ladies and Gentlemen..." dance routines, acting like the protective big sister she used to be and engaging in her share of sisterly squabbles, too, waxing philosophic about her thoughts about being adopted or Chinese or a big sister ("Mom, did you ever visit your orphanage?" she said once as we were driving somewhere, as she and Rachel were comparing notes about their own prior to adoption---or at least as they imagined them). Way back then I had a vague sense of something being "not quite right" (and that's when I started the first of my Google searches of her symptoms), though at that stage I wondered about ear/hearing issues or things like minor thyroid issues, or maybe something related to sensory integration. In early fall, Xian's urinary issues also started to be more apparent, and it came up in relation to daycare when it would take her "forever" to go as the group was getting ready or in the morning before we left for 'school'---after I spoke with daycare, I discovered she was probably only going a maximum of 3 times a day, plus having trouble "going". She was seen by her doctor for that, plus the sleep issues---had some urine tests and a kidney and bladder ultrasound, and when those were clear was referred for a urology appointment.
Xian seemed to perk up for a few weeks at the end of September---my parents arrived for a short visit and over the time they were here she seemed more or less back to her old self, improving a little with her sleep (though not entirely) and seemingly now adjusting to the new routines in her new daycare room. She had a hearing test about that time and did very well, including happily going off for the testing on her own with the audiologist and being very cooperative--something that seemed to show a return to growing independence and self-assurance. But, by Halloween the sleep troubles returned with a vengeance and she was now showing more obvious memory difficulties. At the time I simply thought she was being stubborn---doing things like putting her pajamas on over top of her clothes, needing constant reminders to follow our morning routine--and she also started needing much coaxing to get her to eat to the point where I was feeding her and so was her daycare teacher. She suddenly became unusually clingy---standing and leaning against me during household tasks when normally she'd have been off playing with Rachel---I'm sure now that whatever was going on for her was scaring her, though I then wrote it off as a bit of temporary 'weirdness'. Halloween brought me to my senses and made me clearly aware that Xian had something seriously wrong going on. The same kid who had been delighted for the past two years with the kiddie events at our nearby mall (including lovely indoor trick or treating, craft events and a petting zoo) seemed disconnected and afraid, and while she enjoyed picking out a costume at the Disney store (on the big markdown day), though needing some coercion to go into a crowded, noisy store---she and Rachel were hot pink "Jasmine" girls---she mostly just wanted to wear her costume at home and play quietly, rather than venture anywhere with it. At daycare, she was reacting to any sort of extra sound---acting out during music, rushing to turn off the tape recorder if one of the teachers dared put on some background music, and having occasional violent tantrums to the extent that she was sometimes moved to the director's office (at least a couple of them happened after lunch, which would be consistent with more recent patterns). Then, at least, she was able to talk a little about what was going on---while not able to explain why, she could at least tell me that she had to go to Vivian's office and she "had a bad day." Around then, she was starting to talk about her thinking not working occasionally and being incredibly upset and apologetic when she was reprimanded---she did seem to have some of her own awareness that something was going wrong and that she was disappointing the adults around her. What had been occasional moments of disconnected smiling/laughter/moving around erratically became worse---and could no longer be explained as a true reaction to something funny---she had them following meals and sometimes in the evenings, and they were observed at daycare. She also had periods of staring that began--she'd pick up a DVD box and look at the image for an hour if not stopped.
And then, she began having whole days where she barely spoke--a weekend where I counted six words---and many periods when she wouldn't respond to questions or conversations. We returned yet again to her doctor where the possibility of a seizure disorder was mentioned---the ped thought she might be having many absence seizures every day and she was referred to a neurologist and for an EEG, though she ended up with both a bit quicker when I couldn't let things drag further and took her into the ER (twice, actually--the second time I refused to leave until they admitted her). Will share our hospital experiences eventually....
Looking way, way back, I often wonder if her trip to China and getting ill there a year ago January may have contributed somehow to the illness. She managed to drink some bathwater (we think) and the day before we headed home she was incredibly ill....it took her nearly a month to improve completely, between the gastro symptoms and fatigue, probably in combination with jet lag. The intestinal symptoms lingered so I had her tested for parasites but nothing turned up. Otherwise, though, she was back to her old self fairly quickly---and making great adjustments to her new role as a big sister, considering that little sister had a strong mind of her own when it came to Xian's belongings and was quite 'smack happy' with her big sister in her first weeks home with us. (Xian, after being bashed on the head by 26 month old Rachel in China was known to comment, "Thank you, oh thank you for getting my sister!" And she really wasn't being sarcastic. She learned to defend herself a bit better once we were home and back in her own turf, though, and some days were a bit like the WWF around here for a bit!)
The thing I wish I had a better record of is something I'm classifying as "last moments" (though I hope they are only temporarily that and that we'll get to witness her regain the lost skills and interests). When was the last day she was fully "the old Xian"? "What was the last fully interactive conversation I had with her?" "When was the last day she could still draw a picture?" (one of the more recent declines) "When was the last time she could still enjoy climbing on a playground structure?" (I have pictures from one of the last times she did, at the end of September, but I don't truly know when the interest and the ability left her.) "When was the last time she responded as a big sister?" and of course, "When was the last time I wasn't living with the clutch of fear in my belly?" and "When did our 'normal' life end?"
But although Xian's experienced a long overall decline in many of her abilities, she also has some degree of fluctuation---a lot more earlier on, but still over the day some abilities come back, sometimes in brief glimmers, and sometimes she shows surprising and unexpected memories or abilities. For example, when she was being tested by the neuropsychologist she could do puzzles, and often she is able to do them at home if they don't require too much manual dexterity. Some days, even though she may not be responding much to us, she'll sing along and imitate Dora's actions in a video. She's managed to find (and sneak) hidden chocolate. Her language is sometimes very clear (with surprising sentences, such as her response once to my mother, "Grandma, it's a joke!!" when Rachel was being silly next to her) and sometimes she cannot find the right word, calling clothing "pajamas", toast becomes "butter", "Scooby Doo" meaning the Enchanted video. Her pronunciation also shifts---usually in the morning her speech is slurred, and I am "Mamal" Dora is "Doral" with "L" added to most ending vowels and consonants less articulated. Anyone who has spent much time around her notices that it's like some drug or toxin or hormone is coursing through her system and sometimes there's more of it and sometimes "the old Xian" almost breaks through.
Since Rachel was starting daycare for the first time, while I knew Xian seemed unhappy, I was distracted with dealing with Rachel's adjustments and upsets for those first few weeks. When Xian made the room change, for weeks she kept putting her belongings/shoes etc. in the old places and kept returning to her old room (even during the day she'd tend to wander back)---her new teachers interpreted this as 'behaviour' related, but I wondered, as it seemed odd, almost as if she actually couldn't remember her new 'locker' and new places for her shoes and really couldn't remember the new routines and expectations. Short term memory issues are now a documented part of her complex set of symptoms, so I am certain the new room put her into a confusing situation, in addition to missing her old friends and teachers. She started refusing to eat certain meals at 'school' and that too was seen as 'behaviour', though we now know what too much protein does to her. While she'd always had bit of a 'drama queen' personality she'd never been known for long lasting behavior troubles--in the past any 'bad days' at daycare predictably came when she was coming down with something or she'd missed some sleep. Since she was now struggling nightly with insomnia the new troubles could be blamed on sleep, though she seemed weirdly untired when severely sleep deprived (even back then she was having trouble falling asleep before 10, for a kid who used to need her 11.5 hours and dropped liked a stone in the past---currently I am lucky to see her drop before midnight and get maybe 8 hours).
What we noticed earlier, in August, quite uncharacteristic for her, was that during a trip to Victoria she suddenly no longer wanted to go out on any outings, refusing the petting zoo, trips to the store for treats with Grandma, and she started having perplexing temper tantrums, or so it seemed---not in response to any particular event or thing, just times when she'd begin by getting irritable and it would escalate to a wild bout of screaming and thrashing around. While I wasn't keeping track of anything then, I have to wonder if it was the beginning of her later responses to too much protein. Because they tend to happen about 2 hours after eating, it took me a long time to figure out the pattern. The other thing we noticed in Victoria was that she had some little moments when she simply didn't seem to be quite "there", laughing quietly or smiling to herself without being connected to anything surrounding her. In fact, my mother and I joked about it a little, even, not knowing what it would foreshadow. In the beginning, though, she still had plenty of moments when she was still her old self---organizing elaborate craft or drawing projects, doing her "Ladies and Gentlemen..." dance routines, acting like the protective big sister she used to be and engaging in her share of sisterly squabbles, too, waxing philosophic about her thoughts about being adopted or Chinese or a big sister ("Mom, did you ever visit your orphanage?" she said once as we were driving somewhere, as she and Rachel were comparing notes about their own prior to adoption---or at least as they imagined them). Way back then I had a vague sense of something being "not quite right" (and that's when I started the first of my Google searches of her symptoms), though at that stage I wondered about ear/hearing issues or things like minor thyroid issues, or maybe something related to sensory integration. In early fall, Xian's urinary issues also started to be more apparent, and it came up in relation to daycare when it would take her "forever" to go as the group was getting ready or in the morning before we left for 'school'---after I spoke with daycare, I discovered she was probably only going a maximum of 3 times a day, plus having trouble "going". She was seen by her doctor for that, plus the sleep issues---had some urine tests and a kidney and bladder ultrasound, and when those were clear was referred for a urology appointment.
Xian seemed to perk up for a few weeks at the end of September---my parents arrived for a short visit and over the time they were here she seemed more or less back to her old self, improving a little with her sleep (though not entirely) and seemingly now adjusting to the new routines in her new daycare room. She had a hearing test about that time and did very well, including happily going off for the testing on her own with the audiologist and being very cooperative--something that seemed to show a return to growing independence and self-assurance. But, by Halloween the sleep troubles returned with a vengeance and she was now showing more obvious memory difficulties. At the time I simply thought she was being stubborn---doing things like putting her pajamas on over top of her clothes, needing constant reminders to follow our morning routine--and she also started needing much coaxing to get her to eat to the point where I was feeding her and so was her daycare teacher. She suddenly became unusually clingy---standing and leaning against me during household tasks when normally she'd have been off playing with Rachel---I'm sure now that whatever was going on for her was scaring her, though I then wrote it off as a bit of temporary 'weirdness'. Halloween brought me to my senses and made me clearly aware that Xian had something seriously wrong going on. The same kid who had been delighted for the past two years with the kiddie events at our nearby mall (including lovely indoor trick or treating, craft events and a petting zoo) seemed disconnected and afraid, and while she enjoyed picking out a costume at the Disney store (on the big markdown day), though needing some coercion to go into a crowded, noisy store---she and Rachel were hot pink "Jasmine" girls---she mostly just wanted to wear her costume at home and play quietly, rather than venture anywhere with it. At daycare, she was reacting to any sort of extra sound---acting out during music, rushing to turn off the tape recorder if one of the teachers dared put on some background music, and having occasional violent tantrums to the extent that she was sometimes moved to the director's office (at least a couple of them happened after lunch, which would be consistent with more recent patterns). Then, at least, she was able to talk a little about what was going on---while not able to explain why, she could at least tell me that she had to go to Vivian's office and she "had a bad day." Around then, she was starting to talk about her thinking not working occasionally and being incredibly upset and apologetic when she was reprimanded---she did seem to have some of her own awareness that something was going wrong and that she was disappointing the adults around her. What had been occasional moments of disconnected smiling/laughter/moving around erratically became worse---and could no longer be explained as a true reaction to something funny---she had them following meals and sometimes in the evenings, and they were observed at daycare. She also had periods of staring that began--she'd pick up a DVD box and look at the image for an hour if not stopped.
And then, she began having whole days where she barely spoke--a weekend where I counted six words---and many periods when she wouldn't respond to questions or conversations. We returned yet again to her doctor where the possibility of a seizure disorder was mentioned---the ped thought she might be having many absence seizures every day and she was referred to a neurologist and for an EEG, though she ended up with both a bit quicker when I couldn't let things drag further and took her into the ER (twice, actually--the second time I refused to leave until they admitted her). Will share our hospital experiences eventually....
Looking way, way back, I often wonder if her trip to China and getting ill there a year ago January may have contributed somehow to the illness. She managed to drink some bathwater (we think) and the day before we headed home she was incredibly ill....it took her nearly a month to improve completely, between the gastro symptoms and fatigue, probably in combination with jet lag. The intestinal symptoms lingered so I had her tested for parasites but nothing turned up. Otherwise, though, she was back to her old self fairly quickly---and making great adjustments to her new role as a big sister, considering that little sister had a strong mind of her own when it came to Xian's belongings and was quite 'smack happy' with her big sister in her first weeks home with us. (Xian, after being bashed on the head by 26 month old Rachel in China was known to comment, "Thank you, oh thank you for getting my sister!" And she really wasn't being sarcastic. She learned to defend herself a bit better once we were home and back in her own turf, though, and some days were a bit like the WWF around here for a bit!)
The thing I wish I had a better record of is something I'm classifying as "last moments" (though I hope they are only temporarily that and that we'll get to witness her regain the lost skills and interests). When was the last day she was fully "the old Xian"? "What was the last fully interactive conversation I had with her?" "When was the last day she could still draw a picture?" (one of the more recent declines) "When was the last time she could still enjoy climbing on a playground structure?" (I have pictures from one of the last times she did, at the end of September, but I don't truly know when the interest and the ability left her.) "When was the last time she responded as a big sister?" and of course, "When was the last time I wasn't living with the clutch of fear in my belly?" and "When did our 'normal' life end?"
But although Xian's experienced a long overall decline in many of her abilities, she also has some degree of fluctuation---a lot more earlier on, but still over the day some abilities come back, sometimes in brief glimmers, and sometimes she shows surprising and unexpected memories or abilities. For example, when she was being tested by the neuropsychologist she could do puzzles, and often she is able to do them at home if they don't require too much manual dexterity. Some days, even though she may not be responding much to us, she'll sing along and imitate Dora's actions in a video. She's managed to find (and sneak) hidden chocolate. Her language is sometimes very clear (with surprising sentences, such as her response once to my mother, "Grandma, it's a joke!!" when Rachel was being silly next to her) and sometimes she cannot find the right word, calling clothing "pajamas", toast becomes "butter", "Scooby Doo" meaning the Enchanted video. Her pronunciation also shifts---usually in the morning her speech is slurred, and I am "Mamal" Dora is "Doral" with "L" added to most ending vowels and consonants less articulated. Anyone who has spent much time around her notices that it's like some drug or toxin or hormone is coursing through her system and sometimes there's more of it and sometimes "the old Xian" almost breaks through.
Saturday, March 29, 2008
And the other little girl...
One of my favourite pictures from last summer....(mosquito bites and all for Rachel).
Thought it was time....
To start up some way to document/journal at least some of what's been going on in our lives on this strange journey we've been on since last summer when Xian first started showing the early signs of her as yet undiagnosed and seemingly rare neurological illness. I'll eventually post something about all that has happened in the meantime, to fill in anyone who's jumping into the 'middle of things', but that's one long post, so it'll probably happen in bits and pieces. I suspect that this is going to be a bit of a random/nonsequential sort of blog, aside from what may be in our future---and no certainty at all about that. However, the 'good' part of not having a diagnosis (and, truly, there's little that's good about it, since 'no diagnosis' doesn't get us very far in terms of treatment or services) is that no one can say with any sort of authority that she won't get better, or even that she won't return to her former sparky self--and no one can predict what her future will be. That gives me a lot of comfort and hope while we live in ongoing uncertainty and continue to 'collect' symptoms, appointments, tests, and doctors.
A couple of things in the way of explanation: the url "cleargrace" is the English translation, more or less, of her Chinese name Qing Xian. A good name, as before her illness Xian was a child who loved to move, never stumbled and could hear and perform the rhythm in any music, and while strong and active, she was a graceful girl. The "Bad Spells" in the title refers to how we've all come to explain/narrate Xian's illness. It was Xian herself, earlier on, who told me that "A bad witch put a spell on me" and that "Maybe a doctor will break the spell". Given the lack of any diagnosis or explanation, it seems as suitable as any and it's become how Rachel (3) and I tend to talk about some of the unusual things that happen---Rachel will often say, "Xian's doing ___ because of the bad spell, she can't help it." Or, "When Xian breaks the spell we can go to Chucky Cheese!" (Something she says pretty much every day---we visited CC for the first time when a friend and her daughter came to visit last summer and Xian and Rachel had the time of their lives. The CC 'event' also preceded the first definite signs of Xian's illness by a few weeks, so it's interesting that Rachel also marks it as something from 'before the bad spell'.)
Both girls have long been big fairy tale afficionados, they love everything from Dora's Fairytale Adventure to anything Disney, books, costumes (as you might tell from Xian's picture) and more. So, the fairytale images, tropes and metaphors are not a big stretch for their own sense-making, and it seems somewhat suitable given the lack of anything more scientific. Recently, Xian's been interested in watching the Disney version of Cinderella and is obsessed with the recent DVD of "Enchanted". For a long time---probably since early December or even earlier, she's been unable to tolerate watching any video/DVD aside from Dora for some reason---part of her complex set of symptoms has been severe auditory sensitivities. Something very odd seems to be going on with her perceptions of sound. She can't stand being in a store with 'muzak'--yeah, I know, neither can I, but the severity of her issues meant that for quite some time I could not even take her into a store because she'd get so freaked out. Recently, though, and I think it's because she's started to adapt to whatever odd thing is going on---she's been able to tolerate grocery shopping (all the while with her fingers placed firmly in her ears) and has renewed interest in few fairy tale themed videos, aside from the Dora versions. Her love of "Enchanted" seems suiting--maybe she identifies with Gizelle, sent off to a strange land (New York) by a mean witch, and who has her "spell" broken with a kiss by an unexpected love. While Xian's no longer having many conversations with us, she still occasionally mentions her spell, and wanting to have a blood test to break it. Who knows, maybe she's right. (She was certainly right about being in "doctor jail" -- her response to questions abot where she was when she was in hospital!)
A couple of things in the way of explanation: the url "cleargrace" is the English translation, more or less, of her Chinese name Qing Xian. A good name, as before her illness Xian was a child who loved to move, never stumbled and could hear and perform the rhythm in any music, and while strong and active, she was a graceful girl. The "Bad Spells" in the title refers to how we've all come to explain/narrate Xian's illness. It was Xian herself, earlier on, who told me that "A bad witch put a spell on me" and that "Maybe a doctor will break the spell". Given the lack of any diagnosis or explanation, it seems as suitable as any and it's become how Rachel (3) and I tend to talk about some of the unusual things that happen---Rachel will often say, "Xian's doing ___ because of the bad spell, she can't help it." Or, "When Xian breaks the spell we can go to Chucky Cheese!" (Something she says pretty much every day---we visited CC for the first time when a friend and her daughter came to visit last summer and Xian and Rachel had the time of their lives. The CC 'event' also preceded the first definite signs of Xian's illness by a few weeks, so it's interesting that Rachel also marks it as something from 'before the bad spell'.)
Both girls have long been big fairy tale afficionados, they love everything from Dora's Fairytale Adventure to anything Disney, books, costumes (as you might tell from Xian's picture) and more. So, the fairytale images, tropes and metaphors are not a big stretch for their own sense-making, and it seems somewhat suitable given the lack of anything more scientific. Recently, Xian's been interested in watching the Disney version of Cinderella and is obsessed with the recent DVD of "Enchanted". For a long time---probably since early December or even earlier, she's been unable to tolerate watching any video/DVD aside from Dora for some reason---part of her complex set of symptoms has been severe auditory sensitivities. Something very odd seems to be going on with her perceptions of sound. She can't stand being in a store with 'muzak'--yeah, I know, neither can I, but the severity of her issues meant that for quite some time I could not even take her into a store because she'd get so freaked out. Recently, though, and I think it's because she's started to adapt to whatever odd thing is going on---she's been able to tolerate grocery shopping (all the while with her fingers placed firmly in her ears) and has renewed interest in few fairy tale themed videos, aside from the Dora versions. Her love of "Enchanted" seems suiting--maybe she identifies with Gizelle, sent off to a strange land (New York) by a mean witch, and who has her "spell" broken with a kiss by an unexpected love. While Xian's no longer having many conversations with us, she still occasionally mentions her spell, and wanting to have a blood test to break it. Who knows, maybe she's right. (She was certainly right about being in "doctor jail" -- her response to questions abot where she was when she was in hospital!)
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