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.
Sunday, March 22, 2009
Sunday, March 15, 2009
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
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
Wednesday, March 4, 2009
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.
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.
Sunday, March 1, 2009
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.
----
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
----
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.
----
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
----
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.
Friday, February 27, 2009
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.
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.
Thursday, December 25, 2008
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.
Friday, December 19, 2008
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.
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.
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