Friday, July 11, 2008

This week....

Xian's continued to have some reactions from about the 2nd day of the new medication (Mepron, for the babesia). Very similar to the couple of days she reacted to the zithromax---lots of little crying outbursts, saying that she's scared or angry or "I'm crying!" Her mornings are the worst, though today was a bit better---she'd had a full 12+ hours of sleep (I'm hoping this means she's on a new sleep trend) and woke up happy and smiling, but after her doses of both medications she had some reactions on and off until about noon. She's looking 'clearer' this afternoon and more smiles and silliness. We attended a playgroup Rachel goes to for kids who have limb differences and the coordinator, who last saw Xian in mid June said that she definitely noticed a difference in her speech---even though she was having the odd crying moment. (She seemed to be having some pain/bad feelings in one arm and her hand.)

Yesterday Xian started breaking out in some odd looking bumps -- they don't look like hives, as they appear in little curved lines and clusters and some have a clear bubble of honey coloured liquid. I posted about it to one of the Lyme discussion groups and it sounds like it is a bartonella rash, which can also appear as red stretch mark type lines---Xian's had some of those previously, on her neck, top of hands and across the backs of her upper legs. The sort of interesting bit is that once Xian's little bumps showed up she started showing some improvements and seems a bit less 'foggy'. Will keep an eye on them and call her Lyme doctor if they get worse, but apparently the two week mark of zithromax is when they've shown up in other kids being treated.

Anyway, off to take advantage of Xian's cheerful mood, hopefully we'll be seeing more of that as the days continue!

Saturday, July 5, 2008

Xian the media princess

Xian and I went to the Lyme rally here and Suh Ling Goh, one of the local media who covers health for Global asked me to do an interview (ack!). It went pretty well....wonder if we'll be getting any phone calls from any of Xian's doctors?

Xian's and my interview on Global TV:

Go to http://www.canada.com/globaltv/edmonton/video/index.html -- then click on "Health matters" and our story is the one at the top (or close to the top) that says "Lyme disease".

You can see Xian looking like a 'cool kid' with her Dora hat and sunglasses---though the reason for wearing them is 'survival' -- the Lyme has given her sensitivity to light.

Another story on the Rally:

http://www.canada.com/edmontonjournal/videogallery/index.html# -- click on Lyme Disease Rally

Xian's been having some reactions to the new medicine (Mepron). Started at the two day mark the night before last, same as her reaction to the Azithromycin. She has bouts of crying and pain, times when she says she's scared or "it's scary." I think she's having occasional hallucinations maybe, based on some of her comments about whatever it is that's scaring her -- an adult we know who was treated said that she had them on and off for the first month of her treatment. Yesterday she also had a sore knee and was limping quite a bit---have heard that the Lyme bacteria when under attack will 'show up' in new spots. She's also started needing to spit a lot again--she's had this at bad points when her taste sensations seem to be 'off'. This time around her 'herx' doesn't seem quite as bad as the first time (yet...) and she does have periods where she's feeling better -- usually once the afternoon hits. I've also been told that sometimes there's a bad reaction at around the one month mark--something to do with the life cycle of the bacteria. Guess we'll see. Overall, though, Xian's still continuing to show improvements, even on days when she's not feeling so good. She seems to know that her medicines are making her better---she's constantly going over and handing me one of the bottles. Now I just have to get her to remember when she gets the doses!

We're off for a visit to Chuck E Cheese (and maybe a bit of shopping beforehand while I have something to 'help' with the cooperation) and to buy today's paper to see what the coverage is for the rally -- apparently it's quite good. Will see if there's an on-line link later.

Thursday, July 3, 2008

Progress report



Xian, Rachel and I went to the pools at the Legislature a few days ago -- as you can see, Xian's now attempting her old 'cheesy' smile. You can see, too, one of her symptoms---the clenched hands. Sometimes she has a lot of difficulty unclenching them---I suspect it's probably caused both by muscle involvement and perhaps weird sensations or pain (they also get very, very hot). But, even a couple of days later her hands seem to be 'open' more of the time.

Xian's done quite well with the Mepron. She takes it willingly---which surprises me as I'd been told that many kids will refuse it because of the taste and I'd have to hide it in something. But no, she sucks it back from the syringe and then shudders a bit. She woke up smiling this morning---happy, cheerful, more like the 'old' Xian. During her illness mornings have always been the worst point in her day---she'll often awake crying or even screaming and is normally very irritable until later in the day. While she's still a bit worse in the mornings than later in the day (apparently a big Lyme trait), she's not waking up feeling uncomfortable. Xian's showing lots of little signs of improvement---seems to be tolerating a bit more variety in foods and not having the severe reactions if she gets too much sugar (and will sometimes refuse sugary things now after she realizes it made her feel yucky), speaking a bit more and more interactively, though still struggling with language. I expect that whatever damage has been done by the infection will take some time to repair. Apparently with CNS Lyme lesions can form on the brain or spinal cord---don't think Xian has any spinal involvement (though may have earlier with the problems she had walking/moving), but probably has something going on in her brain. With Lyme, unlike other causes, they can completely resolve, so hopefully that will be the case for Xian. She is popping out with occasional full sentences that aren't repeating something we say, so things are coming along. Rachel keeps commenting on things that she sees as signs Xian's "spell" is breaking---"Xian like cuddles now," "Xian's talking is starting to work again," etc. I bet daycare is hearing some interesting things! Rachel is a bit jealous of Xian's medicine regime---though she's getting the odd vitamin just to make her happy.

Xian's sleep is improving gradually, though with our hot weather and her night sweats (will be happy to see the medication kick those away), she's had a few nights where she has trouble falling asleep. I've been giving her icepacks (or rather, frozen 'boo boo bears') to cozy up with and they do give her some relief. We're camping out on our main floor to stay cool---Xian likes the leather couch, but I usually have to mop up the puddle that forms under her by the time I'm ready for bed. (My menopausal friends say they can identify!)

Xian and I met up with a woman and her two boys who are all being treated for Lyme (they contracted it in the Kootenays in BC) yesterday. This was the woman who told us to call Dr. M in Seattle. It was helpful to hear her experiences, especially in terms of making sense of what Xian's been going through---she had the visual, auditory sensations as well as hallucinations, and could also tell me what Xian might be experiencing in her hands. She also said that she figured that we might see fairly good recovery with about 6-8 weeks, since Xian's already improving. Here's hoping!

I'm going out to see the Canadian premiere of "Under Our Skin" (a Lyme documentary of course---but who knows maybe I'll actually get out to see a movie one of these days!), a friend is coming over with her daughter to hang out with Xian and Rachel. It's hot here so expect they'll hang out in the backyard and paddle in our little pool.

Monday, June 30, 2008

Day by Day

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

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

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

Saturday, June 28, 2008

The treatment begins....

We're back in Edmonton now.

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

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

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

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

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

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

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

Wednesday, June 25, 2008

The "Good Witch"

This will be short, as it was a pretty intense and busy day. Both the clinical picture and the test results were enough to get the Lyme doc to start treatment. Xian's Lyme result showed a mild positive (not enough for a CDC positive, but enough for the doctor to begin treatment based on the whole picture), and she tested strongly positive for one of the Lyme coinfections (something known as babesiosis or babesia), which was pretty much the clincher, since it doesn't appear you get a coinfection all on its own. The interesting thing is that this coinfection is known as a sort of North American form of malaria (it's a protazoa that infects the blood), and one of the big signs is...heavy night sweats, which has been a big problem for Xian ever since she first got sick. The doctor also suspects she may have a couple of additional coinfections, but she said that one of them has a number of variants so it can be hard to get a positive unless the test is specific.

She did a physical exam of Xian and picked up on a few things that no other doctor has made any sense of, if they even noticed. She did a couple of balance/equilibrium tests--while I've noticed the differences in Xian's play and figured that her lack of climbing was due to some problem in that area, it was good to see it confirmed as a 'real' issue. She also noticed (and named--but I've forgotten already what it's called) Xian's 'crunchy' sounds when she bends her arms or you hold her hand, and noticed the dilated pupils and 'off' colouring (circles under her eyes etc.), and her weak pulse (Xian's slowed heart rate came up as an issue during anaesthetic). And of course, noticed the language/memory/neuro issues. I told her how Xian earlier had been interpreting her illness, the "bad spell" given to her by a "bad witch"---and she told Xian that she would be the "good witch Glinda" (of Wizard of Oz fame---Xian happened to bring a little "Dorothy" doll with her) and would help to break her spell with some medicine. Interestingly....as confused and 'scrambled' as Xian is now, she was very cooperative and friendly with the doctor---and once we returned to our hotel room she was wanting me to give her some of the supplements (vitamins, probiotics etc.) we'd gotten from the doctor. (We pick up the antibiotics at the pharmacy tomorrow). So, I'm sure she was aware of that conversation---and the mind is a powerful thing, so probably a helpful little 'seed' to plant.

Hoping everything goes smoothly with medication pick up and getting us to the Clipper and to Victoria. We had a harder day today with getting food into her and she's tired so sounds/light seems to be bothering her more. Will try to take things as easy as possible...but looking forward to being back at "Grandma's house".

Tuesday, June 24, 2008

Crossing fingers

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

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

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

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