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.