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!

Victoria fun

My sister took a bunch of pictures of the girls -- will try to post a few more.

Saturday, May 17, 2008

Maybe some answers?

Had a very interesting week. In the program Xian's attending they got a chance to see her when she seemed to be in headache mode (poking at her eyes, holding her head, under the blanket of 'fog') and the following day (after a couple of doses of ibuprofen) when the fog lifted a bit. I think it's becoming apparent that there's some internal process going on and at least they are observing it.

However, the really big breakthrough started when I began reading more about lyme. The two links sent to me in the last set of comments got me started on a bit of a trail. (I'll post them here just in case anyone wants to take a look).
The descriptions of the neuropsychiatric manifestations of lyme are probably the closest descriptions of what I've seen going on with Xian of any condition ever mentioned for her, and she's also got a good list of other symptoms regularly mentioned with lyme (night sweats, urinary difficulties, malabsorption/digestive problems, headaches, and more). Also makes more sense in terms of the timeline of her symptoms -- she really was well until abruptly having the beginning symptoms, and those came in mid August, following tick season. I've always figured that she contracted something, as there were really no early clues that she was developing some other sort of condition.

I started looking for lyme stories connected Western Canada and ran across the newspaper article about the local teenager (the Journal URL is long so I'm posting it on a site where it's been pasted)
I'd first read the article a few months ago and it seemed in many ways similar to Xian's case---but reading it was followed by Xian's metabolic appointment and while I kept thinking about connections to that story, I didn't pursue it further.

A few days I started emailing people -- I still haven't heard back from the lyme doctor or the guy who is the head of CanLyme -- but I've heard they do reply to inquiries and have been very helpful. I reread the Edmonton Journal article and confirmed that the parents were employed by my university. I figured it couldn't hurt to send an email asking if they had any suggestions for us and I emailed Felix Sperling (the father). Well, within an hour I received an email back from his wife, Janet, and after a couple of exchanges that was followed up by a phone call and a visit to her house to pick up a blood test kit to sent to the California lab everyone seems to be recommending. Xian, Rachel and I were there for two hours -- there was another fellow picking up a kit as well. Very, very interesting conversation. I did get a chance to briefly see her son, Ed -- now an 18 year old attending university and who has returned to complete health. Interesting also to hear that though Xian's doctors have all been saying, "We've never seen anything like this," in fact a good many of them were the exact same Stollery doctors who saw Ed, less than two years ago, and who ordered many of the same tests, as well. Both Xian and Ed were investigated for seizures, had an MRI, CT scan, lumbar puncture, spent time being investigated by psychiatry and were seen by the same neuropsychologist, medical geneticist and metabolics doctor. Both had the test for juvenile Huntington's. The differences in investigations seem mostly about their age. Ed was too old for the late onset autism diagnosis so he got labelled with some rare form of early Parkinson's, and there was more focus for him that maybe he was 'faking it'. Another commonality is that his mom and I have both been given the "Munchausen's by Proxy" label (you know, the psychological disorder where you make your child sick to get attention----quite frankly after my experience with the health system anyone who would want to spend more time around doctors has to be mentally ill!! And apparently there's a third teenager locally with a similar set of symptoms. Both boys' families had to fight to get them treated, even with the positive tests -- and while they both got better (and I know at least Ed's family had him do a repeat blood test to see if his lyme had cleared---which it had), their cases are not officially recognized as lyme. The thing that seems puzzling is that you'd think it would be more cost effective to absolutely rule out something like lyme, using a better test, and treating for it if there was any suspicion, since it's a treatable illness in the early stages. In Xian's case, an autism diagnosis (which I believe is wrong, anyway) would have huge costs to the province, as here autistic kids receive $60,000 a year in funding support and that's not counting any other medical or educational costs. In Ed's case, he ended up receiving one to one special education support---and while he was also similarly enveloped in a big fog, his mother says that there's been a lot of evidence that while he was unable to react/express when he was ill, he was still 'receiving' information---he's talked about classes he was in, etc. and at other times feeling like he was 'stuck' in a kind of loop he couldn't break out of. I've always figured that even when Xian has been at her worst, that's she's still been 'in there somewhere'.

The other interesting piece was that fluctuation (on a hourly/daily/weekly level) is apparently quite common with lyme, as are cycles of improvement and then getting worse -- apparently something possibly linked to the life cycle of the bacteria. Xian's had marked periods of improvement and decline -- getting her first symptoms in August and continuing to get worse until the end of September, when she returned seemingly back to normal for a few weeks, until the end of October, when she got a lot worse, with some ups and downs until the end of November when she got a lot worse -- then improved in early January for a bit until she took a big dive in mid February, and then gradual improvements again in late April.

Who knows what the test results will bring and how much of a fight I'll have on my hands to get the requisition signed (or for any treatment that might be required)---though I'll go to a Medicentre if I have any trouble at Xian's clinic---will be asking to see the partner who visited us when she was in the Alex, who also happens to come from Eastern Europe where lyme is a bit more known. But it finally feels like there's a possibility that makes sense and ISN'T something extraordinarily rare. Janet said that there were three cases of lyme carrying ticks (found on dogs) in this city last summer, so it's even possible if she does have lyme that she contracted it here and not on Vancouver Island, where there has been a lot of lyme publicity lately.

After hearing over and over again that Xian's case was so unique and that there's never been anything like it seen by her doctors it feels pretty amazing to discover at least two other very similar stories---with almost identical trajectories in the local health system. You can bet that if Xian does turn out to have lyme that I'll be very vocal about our experiences, but meeting Ed and his family gave me a lot of hope that we can get Xian back to her old self, eventually.

Sunday, May 11, 2008

Good news but no answers

Xian's metabolic tests were all negative, which is a good thing. However, she's still having reactions to specific foods/meals---which probably lends more weight to the neurologist's migraine idea. It does seem that she reacts to foods that are more processed/prepared---and she does seem to react fairly often to things with high fructose (or high fructose corn syrup). I've been gradually testing things out and now she's back on milk, yoghurt, plain cheeses, small amounts of chicken and seafood and I've been reintroducing a few more veggies and some fruits where there's a good glucose/fructose balance. In the last five days she's reacted to sweetened yoghurt (lots of added sugar in the ingredients) and some cookies. However, since I've had her on the B2 and calcium/magnesium, her reactions have been shorter and a bit less intense. I'm also testing out putting her on a couple of doses of ibuprofen during the day (cutting up adult tablets rather than using the sweetened kid's version), and that seems to also help the 'fog' lift. Xian's also recently wanted an ice pack on her forehead when she starts acting irritable, so things do seem to be pointing in the direction of migraine or head pain. Of course, the million dollar question is the cause. It seems pretty unlikely that migraine would have caused Xian to suddenly lose milestones, have swallowing difficulties, fine motor problems, sleep, urinary and constipation issues, and to lose language abilities and experience communication problems. Her sleep is improving---now she's typically getting about 11 hours a night (much better than the 7 that was the norm a month ago), the urinary and bowel issues seem to be resolving, and she's made dramatic improvements in motor coordination and awareness of what's going on around her. Her language is improving, but is the area where she's still got some distance to go to get back to her old baseline. Still, her articulation has improved (she's stopped slurring her words and saying things like "Mama-l" "Dora-l", "Grandpa-l") and I'm noticing that the times she uses the wrong (but related) word are less frequent, and the words are getting closer in terms of meaning. She's looking more focused and 'clearer' and has fewer times when she's looking dazed. She's back to being her cuddly self, though a bit more clingy than before---I do think her stay at the Alex and probably the whole compilation of confusing experiences has had some impact. It's been interesting to notice a few of her old mannerisms returning, too -- yesterday I saw her blowing her hair out of her eyes with a big puff of air and realized I hadn't seen her do that since sometime in early fall. Ironically, while she's continuing to make big improvements I'm sure her doctors are coming up with that late onset autism diagnosis -- I'll be cancelling her next psychiatry appointment. While it would be nice to get some sort of name for whatever she's experienced, I'm starting to feel like we're better off staying as far away from doctors and hospitals as possible. We do have an appointment with her urologist coming up, and an abdominal x-ray before then, but unless something unusual shows up there (a giant tapeworm? an alien 'implant'?) I don't think that we'll need any more follow up there. Xian will be getting some assessment done at the Glenrose preschool program she's attending---but given that she's improved so much from her earlier assessments (with the neuropsychologist, etc.) and with them noticing big changes in the three times she's been, I'm expecting that they'll probably want to wait a bit longer to do anything.

I have to really wonder if my gut feeling has been right all along --- that she picked up something or other when we were in China last year, or maybe even here earlier in the summer in various outings to the countryside.

We're off to a birthday party this afternoon (and even that tells you something about Xian's improvements--I'll just have to keep an eye on what she eats) and will pick up something special for mother's day dinner---so I don't have to cook. Hope everyone else has a good one!

Wednesday, May 7, 2008

Still more improvements...

No news back yet from metabolics. Xian's doing very well, however. She's had better sleep in the last week than she has for many months---and now is pretty consistently crashed by nine. (I'd still like to dial it back to 8, but I'll take 9 after midnight being the norm a month ago!) She's not had any major screaming episodes since Saturday when she had the last one, only a few small bouts of being irritable/upset and more able to get herself back in control. She's now been on the B2 and calcium/magnesium since the weekend and I think that's helping---she's not done any of the poking at her eyes/holding onto her forehead at all since the weekend. (And I'm on the adult version of the same regimen---I had a PMS migraine and it was gone in two days, so the B2 seems effective for me as well.) The harder part is finding ways to get her to eat it, especially with her still being on the fructose reduced diet. The calcium/mag goes into milk pretty well, but the B2 is bright yellow, stronger tasting and not easily hidden. Ideas welcome.....

Xian had her second afternoon at the PLAI program at the Glenrose. She was obviously happy to see the staff and the kids and even went up to the psychologist with a big 'hi'. She spoke a bit more in the group and was making some attempts to 'chime in' during a group activity---not actually speaking, but moving her mouth around. Her level of awareness of her surroundings seems to be coming back, though she still has some moments where she's foggier or can't come up with the right language. The staff noticed that her coordination was better as well as her dressing skills (well, shoe and sock removal and putting them back on after gym). After we picked up Rachel on the way back home she and Rachel started singing some goofy made up song---wild and noisy in the back seat, something that was music to my ears after Xian being silent for so many months.

I had a bit of a chat with the psychologist at the PLAI program --- I quite like her, she's funny, straight forward and seems to have good insights in her observations of the kids (we parents sit in the one way glass observation room and she explains what the staff are doing etc.). She wondered if what's happened for Xian is some sort of condition causing severe pain/discomfort (like migraines or some other underlying condition) and that's caused some sort of post-traumatic stress experience to re-emerge and make her shut down/regress. Xian did have some PST indicators when first adopted---and had severe giardia. I've noticed in the past whenever she was really sick or in pain that her pain responses have been quite different from other children. She's never been able to articulate specific pain, and it seems to affect her quite globally, so that often how I found out she was ill was that she was behaving oddly. But, she's been a pretty healthy kid, so only really had a chance to observe it in action a handful of times. The psychologist was also a bit skeptical of psychiatry's approach and was very supportive of me removing Xian.

Will post something when I hear back from metabolics.

Sunday, May 4, 2008

Our weekend and small miracles

Similarly to last weekend, Xian seems to be 'clearing up' and regaining a lot of the skills that we all thought were lost. I did hear back from her metabolic specialist on Friday afternoon after we got home, and she reported that Xian's ammonia levels were normal after the protein load---no amino acid levels back yet, but she's going to be calling about that on Monday (her day off--I remain pretty impressed!). She said that it was probably safe to start to gradually increase Xian's proteins and just watch to see if anything happened. (I've also been given the task to check for her what Xian was actually given during the testing---there was supposed to be a large egg that never arrived on her tray, and the amounts of everything were completely specific.) So, still keeping Xian fructose and sugar free (and getting better at that) but have been giving her more milk, a bit of egg (refused), and a bit of salmon (eaten). What is fairly remarkable, is that she seems to be returning to 'the old Xian' gradually---not quite there yet, but at the rate she's improving I am really beginning to believe that she will be able to make a full recovery. Yesterday she started using voices in imaginary play with her princess Barbies (doing little dialogues with my mom and with Rachel) and today she dressed them all up (crowns, jewelry bits) and they were all 'talking'. Right now she's trying to write her name (got two of the letters), and a few hours ago was counting with my mom (helping her to divide up a bottle of Cold FX capsules we bought at Costco). She's started singing and dancing again, and talking to herself in the usual 'old Xian' way. But, the pi├Ęce de la resistance---yesterday we went to Chucky Cheese, for Rachel's sake (remember her constant saying, "When we break Xian's spell we will go to Chucky Cheese). My mom and I figured one of us would be returning to the car or walking outside with Xian while the other let Rachel have her fun. Well....Xian wanted to go in, obviously remembered games she played last summer, and was having the time of her life. (My mother and I, on the other hand, finally both had headaches enough to leave with the kids and half a container of tokens.) This morning, the minute Xian's sleep cleared from her eyes she asked, "Can we go to Chucky Cheese?" So, after a grocery errand that's where we went again. Xian again had a blast, and the only real difference from her participation last summer was that she requires a bit more adult help and tended to dart off from some of the games if they weren't exactly to her liking. (Rachel on the other hand, would have been happy to simply ride the merry go round and kiddie rides, but we did have her try a few things to get enough tickets for the cheapo prize.)

And she just keeps on improving..... The only 'episode' she had (and not even a minor tantrum otherwise) occurred after she managed to grab half a package of Dora fruit snacks Rachel had left on the back of the counter. I wouldn't even have known, but my mom saw her trying to hide the evidence (the little package) in the bathroom garbage---I was getting Rachel out of the bath. So, our pantry now has an industrial giant band of velcro to keep it closed (it's keeping Grandma out, too, so a bit too effective!). Half an hour or so after the fruit snacks Xian started screaming and had an hour long episode, which included loss of bladder control. So, I really do have to wonder what will happen tomorrow during the fructose challenge. If it's not the HFI condition they are checking for, I'm pretty sure that she's got some other sort of fructose intolerance going on, at least at a minor level. I'm also wondering if the increase in tantrums and minor episodes she had last week in the hospital were because of 'hidden' sugars in the foods that came from dietary (she ate porridge and always seemed to have a bad spell about two hours later). I'll be bringing food for all of her meals aside from the challenge tomorrow morning---and may try to get her out of the hospital in the early pm if at all possible and she seems okay.

Anyway, I'm pretty confident that what's going on for her is definitely not any form of autism or childhood disintegration---and that probably keeping her at home and on the current diet will continue her amazing recovery of skills and language, no matter what shows up in the tests. So, another reason to get her out of the hospital before they attempt feeding her a regular diet (which the psychiatrist was planning, WITHOUT communicating with the metabolic doctor!!!)

Will post something as soon as I can after her testing, but I know that some of the bloodwork will take some time to come back.

Saturday, May 3, 2008

And neurology…..

On Wednesday Xian escaped one hospital to go to a follow up neurology visit back at the other hospital. Good appointment and I think the neuro may be on to something. While she can’t say she knows what is the actual cause of Xian’s whole constellation of symptoms, she asked a lot of questions about Xian’s ‘episodes’. For example, does she get pale before they begin (yes), does she have more auditory sensitivity and sensitivity to light before they start (yes), does it look like she’s having pain in her head/headache of some sort (yes), and more along those lines. She thinks it’s quite possible that Xian has been having severe migraines, and their severity may be what is causing the extreme crying/raging, and the visual auras that can precede a migraine may be the cause of all the things she does with her eyes before an episode begins (she will press her eyes in, blink, or sometimes even laugh or seem to be watching something in a glazed fashion) as well as part of what she tends to 'see' and talk about during such events. Her trouble with language and coordination in the half hour or so before an episode also fits with migraines. Earlier on, when Xian was having the laughing episodes more often than the raging ones, she would find great comfort standing in a shower with water beating down on her head. From about mid January until a few weeks ago, as well, Xian hated to be touched on her head at any time. (Now Xian does have times when she wants her head rubbed or doesn't mind things like hair brushing etc., so I have to wonder if she had a huge headache all of the time and now she's having a bit more relief but still having some bad periods.) The neuro's recommendation was to try vitamin B2 (riboflavin) for a few months and see if it makes a difference, as apparently it has a positive effect on migraines (and bonus, she even provided the adult dosage for me---I get them, though mine tend to be more aura and more of a dysfunctional headache than the blinding pain types.). So, I've ordered some for her (weirdly, B2 seems not to be stocked by most pharmacies). While I was there I snagged one of the health fliers on migraine---and found this interesting bit in relation to foods known to cause migraine: cured and processed meats (hot dogs and cold cuts), processed cheeses, chocolate, food additives, and more. Well, funny thing, Xian’s had reactions to the foods that are the top offenders (well, except for alcohol, since I don't let her have martinis!). It’s the first theory that someone has presented in terms of Xian’s episodes that seems to make pretty good sense. She’s never been able to express pain or discomfort very well---something I am sure comes from her orphanage days. Of course, no one knows what the larger cause of everything is, and the neurologist admitted that there could be a number of things going on, and that she didn’t believe it was wise to eliminate any possible medical cause that hasn't been entirely ruled out. I've also been wondering lately whether Xian hasn't suffered some sort of brain trauma that she's now starting to recover from. The very good part of the appointment was that the neuro agreed that Xian is making great improvements in physical coordination and that she’s much better than she was in December, whatever has been causing things, and her comment was, “Well, whatever you are doing with her, keep it up, something seems to be working.” So that was nice---after having many others treat me like I’m the crazy woman. Oh, and she also said that whatever is going on really doesn’t show any signs of something seizure related, and that we need not return to see her unless there are significant changes. So one less appointment on our books.

I'm still processing our week and a half in psychiatry and will be posting something about that soon. I will, however, be taking her home on Tuesday against their wishes (we'll go back on Monday for the fructose challenge and stay the night), so that will give you a few clues as to our time there. Bottom line is that it's not a place for a five year old, or at least this five year old.