In the news

I know, it's been too long since my last post... We're now finished with antibiotics (at least for now) as of the end of December, and things are still stable. Xian's story has received some media attention lately, and I've got a chapter in a new edited Canadian Lyme book, Ending Denial. Here's the news article:
http://www.edmontonjournal.com/health/Lyme+disease+tricky+diagnose/3064838/story.html
Hopefully, in publicizing her story we have the chance to help someone else -- as it was though another news story that I found out about tick borne illness.

Xian is doing pretty well -- what seems left for her is a weak immune system (she catches everything and gets much sicker than her sister or I do) and some perceptual and language issues. It's as if her 'sequencer' is not always working. She's still being followed by the child psychiatrist who helped her with the last 6 months of treatment, and who has really been onside as well as sharing Xian's story with the local group of psychiatrists. The pediatrician is now a 'believer' -- and hopefully will now continue to support whatever Xian needs.

We're nearly at the two year anniversary of when we were at the beginning of having some answers and some treatment. Seems like centuries ago. While I was given some hope at that point I don't think I really figured there was any chance of a truly full recovery. But here we are.... I still wonder what our future would have been had I not stumbled upon that article about Ed Sperling (the teenager who had neurological Lyme), and at the same time had a few people mention it via some Internet contacts. While our lives now are in the 'back to normal' realm, it still feels like the past three years are something out of an old twilight zone episode. Xian herself occasionally has small memories return -- this morning she was remembering something from her time in the child psychiatric ward, telling me about not being able to find her way to the cafeteria and being locked in a room by herself (in the time out room). These memories always seem rather dreamlike, and now her aim seems to be to unlock whatever puzzles they hold -- why weren't you with me then, Mom? Why was I in a place with a cafeteria? It's funny but this two years from the start of treatment seems to bring remembering for both of us, and some for her sister as well.

Breaking news!!!

I'm swamped in midterm grading, so no time for more than a quick post (except to say that Xian continues to do well and we're hoping to take a break or stop antibiotics permanently in December if all goes well).

The big news is that the Canadian investigative news program W-Five is airing a Lyme program. I was interviewed as part of the background of the story, but in the end they decided to focus on two teenagers -- Ed Sperling, the boy whose case lead us to Xian's diagnosis, and that of a teenage girl in Victoria, Nicole Bottle. Both had/have neurological Lyme disease, so quite close to Xian's story. I'm not sure if they will be using any of the info/documentation that I sent them, but they may, depending on what went onto the cutting room floor. Teenagers are more predictable interview subjects than six year old children, so I know it was a good move on their part (Xian would have been just as likely to talk about whatever entered her head than answering questions about Lyme disease, depending on the moment! Nicole sees the same Lyme specialist in Seattle who diagnosed Xian, and I think there will be a short segment filmed in the Seattle office. The producer, Richard O'Regan, is an Emmy award winner, so I have high hopes for the program.

Here's the message I received from Ed's mom:

"W5 and the Lyme show will run this Saturday at 7 pm. It will be rerun on Sunday at noon or one and it's also going online at http://www.ctv.ca/w5/ "

I'm hoping they get a large number of viewers (and lots of response, as well) as we really need more publicity for the Lyme situation in Canada.

Hopefully those out of Canada will be able to see the on-line version when it airs -- I expect you can test that by checking out whatever last week's program was.

Now, to find my instruction manual for the VCR!

Summer Update

Just a quick update. Xian's continuing to do well on her current medications, although her last blood work showed that she had a low neutrophil count. This is a sign of battling an infection and not unusual for Lyme patients, but means we need to be a bit more careful about avoiding exposure to viruses. The frustrating part is that no one from the pediatrician's office notified me about this -- it was the child psychiatrist who mentioned it and was concerned! She's now provided the blood requisitions. She has contacted the Lyme specialist in BC, Dr. Murakami, and seems more confident about being the treating doctor...and it sounds like she's tracking things more carefully than anyone has locally so far. She wants to see Xian having the blood tests every 2 to 4 weeks depending on the results of the one she has on Monday.

So, thankfully, we don't have to travel to Seattle this summer, and I am hoping that Xian may finish treatment without having to return to the US. We've been trying to get requisitions to have tick borne illness testing in Canada, for the coinfection tests that are available and something called the C6 peptide, which can show Lyme infections that originate from many different areas of the world...something that has been a bit of a question for Xian, given how sick she got after her probable exposure in 2007. I've recently seen a risk map for Asia, and both the area where she lived until adoption at 15.5 months, and the area we travelled to for Rachel's adoption early in 2007 are known to be high risk areas for Lyme and other tick borne illnesses. One of the theories I've heard is that the sickest Lyme patients may have had multiple exposures -- earlier infection may be kept in check by the immune system, but a later exposure pushes things over the edge. So, the C6 seems a fairly important test.

The pediatrician has said she can issue the coinfection tests that were recommended, but it has now been a month and no one at the Provincial Lab seems to be able to find out how to order the C6, although I am aware that the National Lab in Winnipeg will issue it...and even with multiple phone calls to inquire, nothing seems to be happening. I have to really wonder about this and the lack of any communication about it. Makes me believe that no one really wants us to find evidence that Xian has Lyme, since then they might actually be responsible for how sick she got when untreated. Hard not to be cynical...

However, I've recently found out that the California lab (IgeneX) where I am getting her tested again (this was the lab where she was tested just before her US diagnosis--so we have a baseline to compare to for those tests) also does the C6, and apparently sends the blood to the same lab in Boston that does the Canadian tests, so will just pay for it and get it done that way. (I've also heard some stories about Canadian Lyme patients who did get the C6 issued then having problems with the blood not being shipped in a timely manner, which affects the accuracy of the results.) They shouldn't be able to argue about the validity of the results if it's the same lab doing it. I also requested the "many Lyme tests" that the infectious diseases doctors told the psychiatrist were done, but funny thing, so one has yet passed anything along....so I will be requesting Xian's full medical file and it will be interesting to see if there is anything there. While Xian was in hospital I did get test summaries and there wasn't anything passed on to me then. I've figured it's time to pull her full medical file, including the two weeks in child psychiatry -- just to see what they flag and don't pass along or 'lose'.

It has been recommended that Xian go off of all antibiotics for three weeks before testing, if she can manage that, so we will give it a try (and thus the urgency to get the requisitions soon -- don't want to be doing this at the start of grade one!). I've been told that a short medication break can also provide helpful information in regards to her current bacterial load and how much longer we may be looking at treatment. The three week break means that the forms of the Lyme bacteria that tend to go into 'hiding' in different forms deeper in the body will be more likely to convert back to the spirochete form, and, theoretically at least, more likely to show up in her blood. Hopefully the tests will provide some useful information.

Xian is continuing to make steady improvements in her memory and speech and in things like counting, writing etc., although she also has some fluctuations. One day she can write her name properly and the next she'll have it reversed or scrambled, though over all she's having more of the better days. She's been watching Nihao Kai-Lan -- a cartoon which teaches/uses some Chinese -- and interestingly she seems to recall numbers in Chinese better than she does in English...perhaps there are links to her 'old' knowledge of Chinese, in a different brain area, as even when she was very sick, she seemed to recall more Chinese vocabulary than I would have expected. She's also started having some memories return from when she was very sick -- which is an improvement, but a bit of a sad one since the memories tend not to be very good ones, or they are confusing images for her. She was asking the other day about sleeping on the leather couch -- last summer when it was hot and she had severe insomnia and was battling lots of bacterial die off with lots of strange brain symptoms we all camped out downstairs, with Xian on the leather couch because she was still going through severe night sweats, and too wild to sleep with Rachel on a little mattress or with me on the bigger couch. She also remembers Rachel and I being sad when she was sick and seems to be working hard to make sense of things, but has a pretty accurate version of events from what she's mentioned so far. A mother of a boy who had a similar case of neurolyme told me a while ago that she believed her son was more 'locked in' than unaware and that he had recounted things that had been taught in school lessons when he had been unable to communicate and severely ill. It does seem more and more that Xian was in the same state -- unable to communicate or control her actions, but seemingly more aware of surrounding events than anyone has expected.

Xian and Rachel have been in daycare for the summer and Xian seems to be calmer and happier than she has been all year -- and also back into the normal ups and downs of her friendships there, and also now able to report the finer details of what goes on during her day. They have a good and busy summer program with lots of young new and energetic temporary summer staff. People who have seen Xian recently, especially those who haven't seen her in a few months, all remark on how good she looks. It's really only when you look very carefully at particular areas when you notice how she is still affected, and those things are still showing improvements. With language, she has much better 'word finding' ability now and is not so frustrated. The main language issue is that her grammar is still a bit 'off' -- with things like word tenses or some word order issues a bit out of kilter still. She has been enjoying a lot of physical play -- doing yoga moves, imitating gymnastic moves she's seen older girls doing etc. She is very flexible and strong and quite proud that she can do things that other kids have a harder time with. Who knows she may be ready for a few classes in the fall, if we can find the right class.

I still find it hard to believe all that has happened to her (and us) in the past two years....it still seems like some weird dream, especially when I keep running into strange struggles with the medical system, though thank goodness we've now got at least one person on Xian's side, and from what I have heard, her story is being talked about in the local medical community. Surely some doctors will have to wonder about her 'miraculous recovery' with treatment for Lyme disease when she was basically written off as an incurable case, not worth any further investigation.

Almost a year....

Since Xian began treatment. And now two years since Xian was likely bitten by her tick. Even with having lived through our journey, sometimes the past two years seems simply unbelievable. The part that seems the hardest to deal with is that even with the evidence of Xian’s continued recovery from severe, debilitating illness, doctors are still not willing to name what she had, and the infectious diseases doctors still stand in the way of anyone trying to treat her. As a person who works in research myself, I find it hard to understand that there’s no one, aside from the child psychiatrist and Xian’s educators, who seems particularly interested in finding out more about what she has been going through. Mostly they just seem to want us to go away quietly. (Hah, like that’s going to happen!)

We’ve had some very good developments in the past month. Xian’s medications were switched (to amoxicillin, ceftin, with tinidazole pulsed to bust the cyst form of Lyme) and within 6 hours of her first dose of amoxi, Xian was showing some distinct improvements. She did get really sick for the first week, which I thought was a drug side effect (and I was quite worried we’d have to switch medications again), but it appears to have been a Lyme ‘die off’ reaction. Within a few days the worst of the symptoms ended and she has just continued to get better, particularly in memory, speech, and cognitive symptoms. This morning she looked at herself in the mirror and said, “My eyes are sparkling!” – and it’s true, she even looks a whole lot better and much more like her ‘old self’ before illness. What’s also been interesting is that in the past couple of weeks she’s really been trying to write and draw a lot – things that she’d not been so keen about since she started to plateau a few months ago. Also showing a lot more curiosity about things and asking more detailed questions (beyond just “why?”) – sometimes connected to what she has been learning at school.

We did end up having some success in the appointment with Xian’s child psychiatrist – who has agreed to provide treatment at least temporarily. While it’s not really her area of expertise (antibiotics) she said she cannot argue with Xian’s progress. She also told me she has tried talking to the infectious diseases doctors, but they refuse to support further treatment, even while acknowledging Xian’s progress on antibiotics. The psychiatrist is hoping we can get the pediatrician back on track or at least doing some of the prescriptions, but we’ll see. I’m not going to be taking Xian back to Seattle this summer, and am going to push hard to get treatment happening in Canada, and to get her case finally recognized. Last week I sent a letter (including photos of Xian from health through illness to now) to our MP (member of parliament) and I am hoping that we’ll get some sort of support from her.

Over the past few days there have been quite a few Canadian Lyme disease stories, based on the recent article in the Canadian Medical Association Journal
http://www.cmaj.ca/cgi/content/full/180/12/1221

Here’s one of the news reports, based on the report:
http://www.canlyme.com/CTV_news_06_09.html

The report says that as of 2009 ALL confirmed and suspected Canadian Lyme cases should now be reported by physicians. So, I will be working on getting Xian’s case included in the numbers, though I am also anticipating that at least some of Xian’s doctors won’t want to include her case because that would also indicate some liability in terms of her medical treatment for a year. But, we’ll see….I figure it is worth a try, and as a fellow Lyme ‘mom’ said to me recently, “Remember, this is a long haul.”

Update for April

Things have been busy for me with end of term – the usual avalanche of assignments and grading to complete.

There have been a few developments in terms of our ongoing treatment battles. The Toronto Lyme specialist did turn down the referral as I figured might happen, as he didn’t believe he would be able to adequately monitor Xian’s treatment from a distance. He’s not accepted any of the other Alberta referrals, so it looks like at the moment he is only taking Ontario patients. He did make some treatment suggestions for a young man in Alberta, so am hoping this may happen for Xian (more on that later).

I provided an update to the retired BC Lyme specialist who has consulted (for free!) on Xian’s case. He made some testing suggestions – tests that should be done in Canada, as those results could help in better access to treatment (though not necessarily, as I have heard from others). He also said that Xian should be considered for a course of IV antibiotics, given the remaining cognitive issues. I’d mentioned that in the speech/language testing and the cognitive testing done by the educational psychologist, while Xian was showing areas where she has improved significantly, areas known to be linked to neuroborreliosis remain impacted – memory/focusing problems (e.g. Xian is unable to repeat/copy a complex sentence verbally, because she forgets all but the beginning), word finding problems, and a number of problems with executive function (known to be frontal lobe related).

Two weeks ago the child psychiatrist’s office called to see if I could come in the next day to meet with her. This turned out to be fairly positive. Dr. W. had contacted the pediatrician to get to the bottom of things. From what Dr. W. reported, it seemed like she did a good job of advocating for Xian – she asked the ped if she disagreed that the medications were working or didn’t believe Xian was getting better, and also asked what we were expected to do since Xian is not yet fully well. It sounds like the crux of the problem is that the pediatrician is concerned about not having any direction or much information in regards to Xian’s treatment. (While she told me via the nurse that she wasn’t willing to deal with Dr. Murakami – the BC Lyme specialist, or contact the doctor in Toronto for advice, it sounds like she was reconsidering that in her conversation with the psychiatrist.) The psychiatrist said she would contact the Toronto specialist herself and see if she could get any recommendations – and she seemed willing to contact Dr. Murakami, if needed, as well. I also told her that we’re at the point where we cannot keep going to Seattle – both financially and in terms of the difficulties it creates for work – especially if we continue not to receive reimbursement of any kind. So, while I’ll take Xian in a few weeks, it is mainly to keep the orals going until something is sorted out here---and I'm at the point where I'm willing to talk to whatever media or political representative I have to in order to get something happening. I’m hoping the Seattle doctor will have some idea whether there are other oral antibiotic options that might deal with the neuro issues – though I think the problems is getting something that adequately crosses the blood brain barrier.

We have an appointment with the child psychiatrist the week after we get back from Seattle – hopefully there will be some sort of plan, or at least some possibilities in terms of direction. Dr. W. also told me something interesting – she did have some contact with the pediatric infectious diseases folks and they apparently told her Xian had many Lyme tests. Well, I asked for copies of all the testing done when she was in hospital, and have seen copies of all requisitions afterwards, and I have not a single record of a Lyme test. So, unless there’s something someone hasn’t been telling me, it is an outright lie. I will be checking with hospital general records and with the pediatrician’s office to check on that, in any case. I have to wonder if they are really simply more interested in covering themselves than actually getting Xian well. In reflection, when I met with the ID doctor in November, rather than simply giving consent for the pediatrician to treat, what should have been done was to suggest some treatment options and possibly IV at that time. Dr. W. also seemed to believe that IV was a reasonable expectation in terms of clearing the last layers of symptoms – and she also noticed the executive function problems in terms of what Xian does even when she is in the psychiatrist's office.

Anyway…it seems that things can never be easy for Xian, even in spite of having a clear response to treatment thus far. It seems I will have to fight all the way to get her completely well. Xian is quite aware of how she is changed since getting sick. This morning when I was telling her again that the next thing she needed to do was to get her boots and coat on (she generally forgets the sequence of all tasks, every day and ends up wandering around aimlessly until reminded) she said, “Mom, it’s not on purpose. The bacteria makes me always forget things.” While I know she hopes she will get better, she seems more or less resigned to her new way of functioning.

Yesterday I heard a very good radio program on Lyme on NPR (U.S. – National Public Radio) on the Diane Rehm show. She was a very good moderator/interviewer and had the author of Cure Unknown (Pamela Weinstraub), a Lyme Literate doctor/researcher (Dr. Schor) and an IDSA doctor whose name I have forgotten.
Here is a link to where the program was archived: http://wamu.org/programs/dr/

I am expecting to see more in the area of Lyme in the news – with spring coming, the documentary Under Our Skin due to hit theatres, the movie Lymelife coming out (doesn’t address the controversies, but shows a family where Lyme is a factor), and the submissions for the review of the IDSA Lyme guideline, some of which will be public.

My only hope is that some of these things may come quickly enough to help Xian – in my nightmares I can see us continually dealing with inadequate treatment and relapse for years to come and Xian losing more and more of years of schooling and parts of her childhood and ending up with permanent brain damage from an inadequately treated infection. While she has come a long way since last summer, we are not at the end of this yet and it is difficult to see her struggle in ways she never did prior to getting sick. While you are not likely to see doctors stop part way through a surgery, leave things half done and sew the patient back up, it seems to be the typical way that Lyme treatment is addressed.

Some good press

Someone on CanLyme posted this newscast on Lyme -- wish that there was more publicity like this, and maybe kids like Xian would get diagnosed and treated properly.

http://www.ktvu.com/video/17543354/index.html

The medication that Xian's pediatrician was unwilling to prescribe (she provided half of what the Lyme specialist is wanting) has been working wonders. Xian did have a bad herxheimer reaction to it, which is what happens when Lyme spirochetes die off. The medication is supposed to get rid of the hard to eradicate cystic form, and I'm pretty sure that's what's been happening. Interestingly, after about two days on the tinidazole, Xian started complaining of aching joints and of pain in places that haven't been an issue before (knees, ankles, other joints), as well as having some return of pain, stiffness and 'heat' in her hands. She was extremely fatigued and having quite a rough go of it. She's on this medication for a week, then supposed to be off of it for the next week--and it took her part of that week to start to feel better. This week is her second pulse and what's been amazing is that suddenly she's making big cognitive leaps and returning to doing some things that we haven't seen in the year and a half since she got sick. She happened to have one of her speech assessments on Friday and the SLP said that she'd moved up from being overall slightly below average for her age to being well in the middle. This increase happened within the past couple of weeks and the only major difference is the new medication. The speech and language pathologist has done her homework on Lyme disease, and what she's noticing is that the remaining issues are all things that are know to be Lyme related cognitive issues: word finding and memory of sequences. So, there's both evidence of the medication working and evidence that Lyme is still involved in speech issues.

No word from the pediatrician's office about a referral, so I suspect we don't have one. Sure would be nice to have someone actually let us know so I can figure out what we do next. I'll be calling them next week to pass on the message to the pediatrician about the medication and begging for the refill that Xian is supposed to have. If she won't do it, I guess it's either a trip across the border or seeing if we can get it through one of the on-line pharmacies (which is what the Lyme doctor said some of her patients end up doing). Will also inform the psychiatrist, maybe she'll help---though there was no response with our last email. So incredibly frustrating to see Xian responding to what's been suggested by the Lyme specialist and then run into all these roadblocks. I just have to shake my head.

Rachel's been sick with a bad flu the past week. High fever for three days that wouldn't go down so took her in to see the doctor (unfortunately we didn't get ours, or I'd have been able to do some of the work required for Xian). Rachel was complaining of stomach pain and on examination was reacting to having her tummy touched so we were sent on to the ER to go for an ultrasound....but of course, with the high fever they also decided to check out pretty much everything else. As it all turned out it seems just to be a virus, and the fever now is mostly gone aside from some spikes. What a difference, though, taking Rachel in---everything being attended to seriously, doctors talking to me like I was a reasonable human being. The complete opposite of every hospital experience with Xian, where her symptoms were dismissed and I was generally treated like a crazy parent. Anyway, thankfully, Xian isn't showing any flu signs, and this week is feeling great. She's woken up a few days and commented, "My body doesn't hurt ANYWHERE!" Makes me realize that she's probably been dealing with at least some level of constant discomfort---especially on those days she seems irritable without any reason to be. Both school and daycare have commented this week that Xian's choosing to play interactively with other children (and even 'lead' activities--this was 'who she used to be!') rather than isolating herself. One of the things I've seen is that her observational abilities are back -- in the past she would always be the one to notice a 'difference', such as if someone we knew got their hair cut or new glasses. She stopped doing that over a year and a half ago as the 'fog' crept in. This week she noticed one of the daycare worker's haircuts (I hadn't noticed, and she said Xian was the only person to comment) and she also grilled one of the kindergarten parents about why she was accompanying a different child (they are carpooling with a neighbour). Xian gave her the third degree, asking if they were "connected" (I think she meant 'related'?). In the time she's been in kindergarten it's been rare to see her speak to a parent or any adult other than her teachers and child care worker, but now she is noticing the outside world again.

With the last improvements I can see that we're probably nearing the end of the long tunnel. The hard part will be ensuring that Xian can get treatment until we're at the point where she's less likely to relapse. Hoping that somehow we can catch a break in that respect.

Lyme in the Media

Lyme has been in the news lately -- though unfortunately due to tragic reasons, a case where there was a shooting and the shooter is reported to have neurological Lyme:
http://www.usatoday.com/news/nation/2009-03-08-church-shooting_N.htm
What's been interesting is tracking how often the Infectious Diseases Society of America (IDSA) keeps being quoted (and offering interviews) to deny that Lyme could produce severe neuro psychiatric symptoms. Well, having lived with Xian through the worst of her neurological issues, to me it doesn't seem implausible. The denials from the IDSA camp seem to be of the "they doth protest too much" variety.

Whether it's related at all, the producers of Under Our Skin have sent releases to Lyme organizations mentioning this:

On The Marc Media Update_*: *UNDER OUR SKIN, *the documentary that
investigates the untold truth of Lyme disease,* * will be featured on
"The Doctors", a nationally syndicated TV show, taped in LA.

They are asking for people to submit questions about Lyme disease for their panel of
doctors to talk about on the show. They also want to hear your stories.
Please ask them to do an entire show, not just a segment on UNDER OUR
SKIN and the seriousness of Lyme disease. If you have not seen
the show - check your local listings. It's syndicated so it is on
different times and different channels depending on where you live.
Please spread the word and ask people to write in. The taping is next
week so there is not much time. Thanks again for your support. Here
is the link: *http://tinyurl. com/arhjpg

----

I really hope that the show presents a balanced perspective and includes stories that might help people before the point that Xian had to get to.

Things don't look too optimistic for the Toronto Lyme specialist referral. The other Alberta family was unable to get an appointment for their son, and the reason was because he was out of province. So, now wondering about how we'll get Xian's treatment to the point where she's fully well and unlikely to relapse. It seems the alternative is a lot more time spent in Seattle and a lot more money spent on meds out of pocket. It's too bad Edmonton isn't a border town, as at least that aspect would be easier. Quite a few of the Vancouver Island and Vancouver folks get their medications in Bellingham when they can't get Canadian doctors to support treatment. Have been hearing some 'buzz' about a class action suit that some Vancouver Island parents are spearheading (their daughter has been in Connecticut for months, getting treated after being dismissed in BC -- here's a link to her story:
http://www.bclocalnews.com/vancouver_island_south/sookenewsmirror/news/41033109.html

Unfortunately, to this point it seems that nothing else has made much of a difference and when kids like Xian who are responding to treatment in ways that are nothing short of miraculous have no guarantees of treatment to the point of full recovery, I start to think that legal action is maybe the only way, sadly.

Feeling rather grumpy about our recent issues with the pediatrician, especially when the medication being pulsed (and which we can only get half of what the Lyme doctor wanted) does seem to be getting rid of some symptoms. I know if Xian had TB or cancer she'd get more than adequate care, but because it's Lyme (and no doctor will even name it that) the only way she will get barely adequate treatment is for me to continue to fight for her. And what will happen to the other kiddos who are unlucky enought to meet up with a tick this spring? Sighhhhhhh

Referral, maybe?

Thought I'd update. After playing telephone tag with the nurse in the pediatrician's office I managed to have a couple of conversations with her yesterday. While we can't get an appointment sooner (Xian's next one is not until early June), the pediatrician has agreed to a referral to the Toronto Infectious Diseases doctor. He's currently one of very very few doctors openly treating Lyme disease, including some pediatric cases.

I'd asked for a referral way back in early September and was told she'd do it only if we didn't have any luck with Alberta infectious disease -- I guess the new pediatric guidelines would be a strong confirmation of that. Hoping that we can get the referral soon, or at least in a month or two.

We've also had some great support from the CanLyme people, who've used our recent turn of events to begin a letter writing campaign regarding the new pediatric guidelines. The response that they received from Harvey Artsob who runs the Canadian National Infectious Diseases Lab was very supportive. (The Lab has moved along in recognition of the disease.) CanLyme is also trying to get a letter writing campaign going to MPs and MLAs. Of course it is not all for Xian, but her story reminds everyone that no child has any guarantee to diagnosis, treatment, and recovery from Lyme disease in Canada as things stand.

The good part about a referral to the Toronto doctor is that it would probably mean I'd be able to claim our medical expenses and get some reimbursement, which is not possible in terms of the "unrecognized" Seattle treatment. At this point, with Xian's doctor's refusal to represcribe one of the medications, we'd now have to stay in Seattle longer in order to get it compounded there---it's not something the pharmacies usually have on hand. (Today I'm picking up the one prescription the doctor agreed to here -- and even with a really good compounding pharmacy, it has been a five day process.)

The teacher and director of Xian's school, who are of course aware of how Xian has progressed and how ill she was still in September, now seem to have a very good understanding of the h**ll we go through in terms of getting treatment, any official recognition, and any services for her. Thankfully, the director was a former high level education ministry office and has been able to strong arm a few things---I've been asking for a speech and language assessment since early fall and it looks like that is going to happen. I've been recently thinking about school placements for next year---there could be some options that would be more convenient in terms of child care etc., but I am now thinking that with the school so much on our side, it would be a shame to have to start new. In our situation, having someone who actually 'gets it' and who can make some things happen for Xian is a resource that we need to hang on to. Xian's also going to have some repeat cognitive testing at the Glenrose Rehab hospital---the ed psychologist who is there is also very much onside (and she's from Manitoba and knows that Lyme is growing in Canada).

So...hopefully our crisis will be averted, which helps. It's been a couple of rough weeks for us generally---Rachel's had a bad cold (and I'm hoping won't end up with her usual eye and sinus infections if we can avoid it), I'm succumbing to one, and Xian has been not feeling very well herself over the past week. Not sure if she's also fighting the cold or if it's Lyme related, though I suspect the latter as she's had her weird skin rashes return and she's been complaining of more muscle pain. This morning she said her chest was sore, so will keep a close eye on that one. And of course I'm in the post-midterm madness of exams to grade and the end of semester to get through---always a little insane even when I didn't have any children!

Oh, and if you have time --- the discussion on the Oprah forum now includes over 900 posts. Many stories not that different from ours. http://tinyurl.com/bqo8vo
There was a message sent out to send a message to Oprah's link to requesting a show/being a guest -- so I did, including a link to Xian's blog, if they want more details. (And I mentioned all the horrific video I have of when Xian used to have hallucinations and screaming episodes, laughing fits, and catatonic episodes. Not that those are something I would really want to share with the world, but I figure if it means something changes and other kids avoid suffering, it would be worth it.)

Not sure if anyone here watches Little People, Big World -- I had insomnia the other night and happened to turn it on, only to see the family joking about a tick on one of the kids. They burned it, squashed it, and then squeezed it off leaving the head embedded before one of the kids picked it out. Of course, that's exactly what NOT to do if a tick is infected with Lyme -- they would have pretty much guaranteed infection. I know some folks are writing to the producers -- hopefully someone will get the message and hopefully someone will get that poor kid on antibiotics now.

Trying to get public awareness...

I'm not really sure how many people are following Xian's blog at this point, but thought that it wouldn't hurt to post something here. Anyone who knows our story is aware of the devastation that Lyme disease brings, and our recent events as posted in the previous post indicate that there's still huge problems in terms of maintaining treatment. Here's what's been posted recently on a number of Lyme groups, including CanLyme---the group that's provided a lot for us in terms of support. I expect that the numbers count, so even just a line of support would help. Many adult Lyme sufferers are simply too ill to sit at a computer and there's some concern that there won't be the needed response. The stories listed on the comments pages are pretty tragic and there are more than a few that mirror Xian's story. Feel free to pass along this message---people need to know about this disease as it continues to spread, so that treatment can be pursued at the beginning, when treatment is much easier.

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Oprah is deciding whether to do a show on Lyme THIS WEEK, and we need to fill her comment board ASAP. According to the show producer, emails directly to Oprah will NOT be read; you need to post here:
http://tinyurl.com/bqo8vo

Having Oprah feature Lyme will help the new bill in Congress and it will pressure the new IDSA panel to do the right thing.

Note that there is a 200 word limit. The important thing is that you post a paragraph or two about your personal story, not how long it is.

Can we please ask you to post again asking Dr. Oz and Oprah to do a show on UNDER OUR SKIN, the documentary that exposes the truth about Lyme disease?? (There are only 129 posts up there now.)

Here is how:
Here is the link where you can post a message - if you are already a member of Oprah's community.
http://tinyurl.com/bqo8vo

If you are not a member of the Oprah community, you will need to sign up first:
click on this link to sign up:
https://www.oprah.com/mbr/mbr_new_profile.jsp

Once you have filled out the appropriate info -- easy stuff, name, username, email address, birth year -- then you will get an email to your email address: You'll get an email from Oprah's web people sending you an activation link that you will need to click on in order to get started. Then you can click on the above link and post your comments.

It sounds harder than it is, if you haven't done it before.
Thanks so much for your efforts.

Kris
Under Our Skin

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If you haven't seen it -- Under Our Skin is a documentary on Lyme disease (if you search for it on Youtube you can find some of the trailers). It's now being show at some film festivals and will go to the theatres later in the spring.

My mom figures that Xian would make a good Oprah guest. And I'm now at the point where I say "whatever it takes" -- but something needs to be done. We're still living in a weird twilight zone where no one will speak those words (she has Lyme disease) and I'm made to feel like a crazy woman for trying to get the treatment and services that Xian needs.

An update....

Life has been incredibly hectic for us since the beginning of January. Between my teaching schedule (which involves both an evening class and an early morning one---not so good for keeping to a sleep schedule for little ones), Seattle visits and the ups and downs of treatment, I’ll be happy to see the end of the semester.

Xian’s had two trips to Seattle to see the Lyme specialist since my last post. In early January the doctor decided to switch her back to azithromycin from amoxicillin, as the amoxi caused horrible nausea and Xian felt pretty miserable on it so it was becoming harder to tell what was medication and what was Lyme symptoms. Since Xian had responded so well to the Bactrim, it was decided to go onto an azithromycin and rifampin combination, as that has a good record for treating Bartonella, one of the coinfections that is suspected to be causing some of her symptoms. Xian’s medication for babesiosis (Mepron) was also stopped, as she’s not had any of those symptoms for quite some time (night sweats/fevers/chills/severe headaches).

I’m happy to report that the changes seem to have been a very positive move. Xian is now eating better, gaining back some of her weight, and also seems not to be as badly affected by gluten/fructose/sugar intolerance. While she’s still on a restricted diet, at least she can enjoy the occasional Timbit! She also seems to have a growing sense of what causes her to feel crummy---and while she loves to carry around a little bag of candy, or hang onto a mint for days, she’ll often not eat them. It seems that possession is enough to satisfy her and she remembers how they make her tummy feel.

Her digestive symptoms overall are much reduced, and her mood swings, which had been a big part of her illness since the very beginning, are not occurring very much. Now her outbursts or tears tend to be happening more when she’s tired or not feeling well, or when she’s having her cycle of die off, which tends to bring both physical and emotional/cognitive symptoms back.

Socially, she’s returning to the child she used to be, and now at kindergarten "pick up" it’s not unusual to see her playing with a group of girls. Not quite “running the show” like she used to, but certainly much better than even a few months ago, when I’d find her either with one of the teachers or doing something on her own and not wanting anyone to interact with her. At daycare she’s now back to being very attached to her old “best friends” and wanting to have play dates again.

Physically, she’s still having some symptoms come and go, but is much more able to articulate what is going on so it’s much easier to track what’s happening. She’s still showing some neurological ‘quirks’ that weren’t there before she was ill, and that seems to be the harder area to clear. One odd thing is that while she can orally spell her own and Rachel’s names and could properly spell her own name (Xian) in sequence when she was four, before getting ill, now she is entirely unable to remember the written sequence for either name. She always remembers her own four letters and most of Rachel’s, but the order continues to elude her. She still gets frustrated when people don’t understand what she’s trying to get at and still doesn’t sound exactly like she used to before she was ill. Her articulation is still not entirely back—whatever it was that caused the severe slurring of her speech and lack of tone in her voice seems to still be present but in minor way. She’s met with a speech and language pathologist at her school and I’ll be meeting with the SLP later next week. I’m also in the process of arranging follow up cognitive testing with the Educational psychologist who tried to assess her last summer, both to be able to make some decisions about grade one placement and services she might need, and also to have something tangible in terms of what’s been happening for her cognitively as a result of treatment.

As it turns out, this may be more important than just tracking…. We returned recently from Xian’s last Seattle appointment. The doctor is pleased with her progress, though believes that Xian may need to continue treatment for about a year although that’s a bit uncertain since we won’t know when she’ll be able to end treatment until she progresses a bit further, since she’s still having symptoms and herxheimer responses (which indicate she’s still got a bacterial load). The doctor says that in her experience and that of Dr. Jones (the Connecticut pediatrician who specializes in Lyme treatment), ending too early often results in relapse, and relapse can mean disease that is even worse than it was the first time around. While I (and Xian) would really love to leave antibiotics behind, given how sick she was, how poorly the medical profession responded to her severe illness, and the devastating impact on our lives, I’m reluctant to do anything that would risk a relapse. Unfortunately, a recent publication may have put Xian’s ongoing treatment in jeopardy, at least in terms of getting her prescriptions filled in Canada under my health plan (hundreds of dollars a month….). Canadian pediatric infectious diseases doctors, including the ID doctor who saw Xian in November have put together recent guidelines for pediatricians. This document would deny treatment and testing in cases like Xian’s. Since Xian’s had more than a month of treatment, this says she would be “cured”.
The link is at:
http://www.cps.ca/english/statements/ID/LymeDisease.htm
While up until now Xian’s pediatrician has been quite willing to rewrite the prescriptions recommended by the Seattle specialist, had agreed to a year of treatment, and in January (before the document came out) was still saying she would treat for a year and agreed that treatment for two to four months beyond the last symptoms seemed reasonable (She's prescribed for six months). Well, now she’s balking at further treatment. And rather than seeing us in person, or speaking with me, she left a message on my answering machine with the news. Still figuring out what to do….or what our options are. She did refill part of the prescriptions and we still have some left, so at least that will give me time to see if we have any options. I’m figuring it’s probably time to go to our political representatives (MLA and MP) with Xian’s story and see if they can suggest anything. It seems pretty unwise to allow Xian to become an experimental lesson in relapse for our pediatrician and local ID doctors, and you'd think that she'd have some right to treatment until she is completely well. While Xian's certainly moving closer to the end of treatment, I believe it’s a terrible gamble to end it without some sort of knowledgeable verification (e.g. from a Lyme aware doctor) that the time is right. But, I expect the pressure is on the pediatrician, and I imagine that’s due, at least in part, to the new Infectious Diseases “guidelines”, in addition to this being such an unpopular disease to treat, in terms of the Canadian medical health system.

While I'd hoped, with Xian's dramatic improvements on treatment, that things might get easier for us, it seems that I'll have another fight on my hands. While I've never looked into legal possibilities as a great solution, I'm really starting to think that may be the only way to get any sort of change happening. For Xian, if the doctor refuses further treatment it's not like we don't have other options (at least while we still have a house to sell or relatives to borrow from to finance US purchased meds and treatment), but it just seems so unfair. Criminal, really, that doctors would roll the dice with her health, knowing how entirely disabled and sick she was. We were just getting to the point where I was starting to think I might be able to plan for some parts of our lives over the next few years (a sabbatical, some travel, and even the little things the girls haven't been able to do -- things like music lessons, swimming lessons). I can't imagine being in the situation we were in when Xian was so sick, nor consciously putting her through the pain and trauma she already has experienced.

Mamma Mia, Happy Holidays!

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

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

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

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

Long overdue....

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

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

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

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

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

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

A long overdue update

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

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

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

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

"Before" and Three months of Treatment

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

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

Little by Little...

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

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

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

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

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

Off to School

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

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

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

Back....

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

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

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

Two steps forward, One step back

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

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

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

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

The Roller Coaster

We've had a few ups and downs since the last post. Grandma and Grandpa were here for a visit--saw Xian's improvements and we managed to go out for a few meals, go out into stores and do some things that until recently Xian's sensory sensitivities made very difficult. Unfortunately, the last two days they were here Xian started to have what seems to be a 'herx' reaction -- she had the return of her episodes of pain and screaming, got quite 'foggy' and started having bladder problems again. Since this was happening close to the 30 day mark of her medication, it's probably because of bacterial die off. The little 'bugs' apparently release toxins as they clutter up your system, and it's a fairly common happening between the 4-6 week mark of treatment. She was feeling a bit better yesterday, though still had one episode in the afternoon. This morning she is quite sparky and was dancing to the Backyardigans and playing with Rachel, so crossing fingers that she's clearing out that bacterial clutter effectively. The good thing, I suppose, is that her symptoms are in the areas that have posed some of her worst problems, so hopefully that will mean improvements in terms of those areas, too. What I've heard about herx responses is that while they can be quite bad and go on for up to a week, if it is bacterial die off you should see improvements after the bad period.

Anyway, probably also a good reality check for me in terms of what we can plan in our immediate future -- at least until I can sort out her 'pattern' it's probably a good idea not to make any dramatic moves (like ending my leave of absence too early).

Xian's started doing some interesting things with language. With Grandma reading to her, she was repeating what Grandma read, and she's also been repeating/imitating longer statements that she hears Rachel or I say. Her singing to herself is returning--yesterday (despite the 'bad spell') afterward she was singing the Wizard of Oz song and with a fair bit of accuracy. Just before she got sick she was in a phase where she and a few daycare friends were very keen about all things Wizard of Oz after seeing bits of the Judy Garland movie. Xian used to love musicals---might be time to try to borrow a few from the library and see if that interest is coming back. It does seem that her sound sensitivities are diminishing---she's no longer constantly plugging her ears and can cope with music in stores and restaurants fairly well, with an occasional 'glitch'. Really hoping that we see Xian's language begin to return to her former levels---since it has been affected for so long (really, since mid fall) I've wondered whether she will have lasting damage. People keep telling me that kids tend to bounce back very well with Lyme/tick borne disease, so just hoping that Xian is typical in that way.

Oh, and some good news from the ped's office -- we have prescriptions now for the meds she's on and it sounds like they are willing to work with Xian's treatment, though do want some advice. We will see one of the pediatricians next week (Xian's doctor is on holidays for a month). We're also trying to get one of the meds direct from the drug company (they will provide it at no cost), so hopefully that will work out---the doctor signed the forms, so that's pretty positive. I'll still be approaching Xian's psychiatrist as 'back up' --- it would be nice if we didn't need to make too many more Seattle trips, though at least not having to buy the meds there makes a big difference.

Some Interesting Developments

It's been a busy couple of days. We've heard from Xian's Lyme doctor in Seattle, who sounds pleased with how things are going--and based on the rash suspects we'll need to add a medication, but she wants Xian to have a blood test done first (I've been procrastinating on that but will get it done next week). She's upped the pm Mepron dose so Xian's now taking a half teaspoon twice a day. She also said that since Xian seemed to improve after she began the azithromycin, before she started the Mepron, that's a pretty good indicator that she does have Lyme, as azith. doesn't deal with babesia.

Also, I managed to make contact with the retired Lyme specialist in BC who is consulting with doctors willing to treat for tick borne infections and he is willing to take on Xian's case if we can find a local doctor. He agrees with the treatment Xian's getting right now and also seems to think that she's responding well---his guess was that she may not need the Mepron for too many months and then can move onto focusing more on the Lyme. Have been in contact with Xian's pediatrician's office and it seems they are interested into at least looking into things---I passed along some information and will be getting the Seattle doc to fax a letter with her diagnosis and treatment plan. The ped is going on a month's holidays so we'll be seeing someone else at the clinic in the meantime---and I suspect that if they do agree to treat they may share the responsibility. I left my copy of Pamela Weinstraub's Cure Unknown for the ped - with the neuro Lyme section flagged - I figured if she's going to be on holidays maybe she'll have some time for reading! (Well, it's a $20 gamble...). I've got two new copies about to arrive anyhow -- Chapters has them on sale with free shipping for the price of two. I think that the ped wants to make a referral to pediatric infectious diseases -- which may be problematic as last word I heard they are still denying there are any Lyme cases in Alberta, but I guess I'm curious how they will explain Xian's improvements from the last time they saw her (in December at one of her sickest points) to now, and why the start of treatment for babesia/lyme has coincided with huge improvements. (Well, it'll be fodder for that 'lyme expose' book whatever happens!) The nurse seemed to be impressed with Xian's improvements -- Xian was calm and looking quite 'sparky' and not doing anything weird (thankfully -- she still does have occasional moments). Whatever happens I think it will be good to have Xian seen by a pediatrician so they can clearly document how she has been improving with the treatment. Maybe that will convince someone? And truthfully, I'd forgive a whole lot of medical 'past history' for an acknowledgment of Xian's improvements, and some treatment, of course!

And....some improvements: I'm wanting to keep track, so though I'd include a little list:

--activity level/coordination improving (lethargy is less) -- Xian rode on the geo bike for about half an hour yesterday, racing her sister around the kitchen island. (Previously the most I could get her to do on the geo bike or any bike was a few minutes, and that's with a lot of help/encouragement). She's also been jumping on the rebounder every day and having a blast. (Didn't have enough balance previously.)

--finished a 40 piece puzzle (aside from about four pieces)

--returning to old interests with art projects (yesterday painted a picture and glued on sequins

--playing with toys more (lined up her little Dora figurines along the kitchen counter in order of height after playing with Rachel)

--going to the washroom independently and now wanting 'privacy' some of the time

--tolerating music in the car a lot more (used to scream 'Turn it off!')

--wanting to play with same toys as Rachel, and doing a bit of 'competing' too (Rachel said this morning that she wants Xian's spell to break a bit more slowly! R.'s having a bit of trouble learning to share again, apparently.)

--trying to communicate with and engaging with adults at Rachel's daycare (waving hello, or saying hi, wanting to join into some activities)

--generally more cuddly, except when she's having some discomfort (but that was always true)

--singing, talking to herself in the 'old way' (right now she's singing, "Scooby do, oh, Scooby do -- You can have it, la la la, You can have it")

--dancing along with kid's TV shows (The Wiggles etc.) instead of being freaked out -- tolerating television programs (used to only want very specific DVDs or videos that didn't bother her visually or have sound that bothered her)

--paying close attention when I read books at bedtime (she 'lost' her attention span and any interest in books in mid fall). She's still not joining in verbally or asking a million questions, but the other night she put her hands in the right positions for the book Piggies. For a while during her illness we couldn't even do bedtime stories when Xian was present because she got so irritated (the visual images and just the sound of me reading bothered her).

While it will be great when her speech returns at her old level, the Seattle Lyme specialist says that will take some time, but we could see big improvements by the end of the summer.

Hope everyone has a good weekend.