Friday, August 8, 2008

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.

2 comments:

marciakrull said...

Hello Linda. I'm so very happy to hear the continuing good news about Xian and her treatment progress. How wonderful that you have the Lymies (in the midst of the awfulness of Lymes, a chuckle at this term for all you devoted family members advocating for your loved one!)as your significant resource in knowing what to expect--it offers you much reassurance that all is going as can be expected.
Blessings to you and Xian and Rachel. You're in my prayers!
Marcia K from Wisconsin
A fellow SWT mom-Sara Marina (age 5) and Kate (age 2), both adopted as infants from Kazakhstan

Linda said...

Actually, "Lymies" are what quite a few of the folks on the Canadian Lyme discussion board (CanLyme) call themselves. And then of course, there are lots of plays on Lyme/lime---I'm thinking I may have to get Xian a lime green princess costume as suitable attire for someone who is coming out of her bad spell!

The information I've received from adults who've either had Lyme or who've had children with Lyme has been phenomenal. Whenever there's something I think is a bit of an odd reaction they seem to be able to describe the physical sensations she may be going through. After having no medical person make any sort of sense of Xian's reactions it's been very reassuring to hear that so much of what's going on really does fit into the picture of neurologic Lyme.

And thanks--it's great to see ongoing positive changes.
L.