Thursday, May 29, 2008

The testing zone

Not too much to report. I've managed to figure out how to fill out the IGeneX form for Xian's Lyme test, and after a few phone calls today with Xian's clinic we've got someone who'll sign it. Before we left for Victoria I called and spoke with the nurse -- Rachel had hand/foot/mouth (poor kid had a mouth full of blisters, though at least she recovered quickly) and I wanted to book an appointment to get Xian's Lyme form signed as well as find out if she actually ever was tested for Lyme using the provincial lab, even though the provincial results haven't shown positives in the cases of the other local kids. So, last week the nurse said just to call and we could drop in and get someone to sign the form. Today, after she spoke with the pediatrician in the meantime (who doesn't remember a Lyme test being done, but no one has had time to actually look through Xian's files -- it always seems like I am asking them to run a marathon or something when I am asking for information, but they've also been reluctant to pass on a copy of her whole file) the nurse said I'd have to come in on Monday when Xian's pediatrician was going to be in. I said that if that was the case I'd just go to a walk in clinic -- but just heard back that the other ped who has helped with Xian's case is able to do it. The Lyme test needs to be done on a Monday in order to get tested "fresh" after travelling to the lab--they won't test samples that arrive later than Weds. and the sample needs to get shipped to California. I figure Xian should probably also get the 'local' Lyme test, but since even people with Lyme confirmed in Europe or other provinces don't test positive I won't be holding my breath. I don't know if she was tested for Lyme in her lumbar puncture, but since they reserved extra vials for later testing it seems like something that could be ordered if one of her doctors chose to do that.

On a happier note, we had a great time in Victoria -- everyone there noticed how much better Xian is from when they saw her in early March. She was thrilled to see my sister and went running to her and leapt into her arms. She still had some ups and downs there and one spectacular 'episode' but it was probably fortunate it happened there as my mom made the connection between the event and Xian's breakfast of oatmeal -- she also remembered a couple of oatmeal triggered screaming bouts when she was here. While it's been clear for a while that Xian's reacting to wheat, making the gluten connection seems to really be helping and I think she's actually sensitive to very tiny amounts (such as breaded coatings on french fries). Since then, and avoiding gluten and high fructose foods she's not had any of the big episodes. I think there may be a few other things she's sensitive to, as sticking with very plain non processed foods does seem to work best right now. She's also started asking for "pink medicine" (tylenol) and seems even clearer about when she's having pain and can point to what's hurting her.

In Victoria she was the most interactive in terms of play that she's been for months. She set up a "doctor's examining bed" on the end of my mother's treadmill (which she folds up when the kids are there) got the play medical kit, lay down and called for Rachel to come and examine her! She also took on the doctor role (and I have to say the kid really does know how to use all the instruments, after her own experiences). I made sure to take some video clips and will be sending those along to Xian's psychiatrist before her appointment next week. Aside from a few language difficulties (Xian still hunts for the right word and often comes up with related by incorrect words) she was playing much like her old self---interactive, assertive, funny. Hopefully it'll help lay the autism mis-diagnosis to rest and maybe get her doctors refocused on trying to find what's actually going on. As you can see in the picture below, Xian was back onto swings and playground equipment -- though she still fluctuates We went to the Beacon Hill playground and there was a band playing outdoors -- the sound really bothered her and she wasn't able to do anything except cover her ears. The other thing we noticed was that while she was able to identify people by going to them if you asked her to ("Go get Grampa," etc.) and she obviously knew and responded to them, unlike March when she was in such a fog that there wasn't even a glimmer of recognition most of the time, she rarely was able to come up with anyone's actual name. Everyone (including my father) was called "Mommy". She also does this with her teachers in her program -- can't remember anyone's name for very long. Yesterday we were looking at the photos my sister sent. I pointed to Rachel and asked her to tell me who she was and she said, "YueYue" which was Rachel's Chinese name and what we called her for the first few months after she was adopted. At her program yesterday she also signed "more" -- something she used to do as a toddler, and hasn't done it since she was probably about two and a half. So, odd little pockets of information from long ago seem to be resurfacing, while she will forget more immediate information. Last week in her program she wrote the first three letters of her name, though not in sequence---I asked the woman who was working with her yesterday if she'd given her some help and she said she hadn't. Before Xian got sick she was able to write her name correctly and using upper and lower case letters -- she started "losing" letters and sequencing and moving to a shakier upper case in the middle of last fall, and then lost all of her writing ability. So, good to see it beginning to emerge again. It was a bit funny, though, as I commented on it, a number of the parents observing their kids were commenting that their 4 and 5 year old boys couldn't write their names at all except for maybe an initial, so while Xian's writing isn't 'back to normal' for her, at least she's in a fairly "kindergarten" realm again. They've been starting to assess some of the kids in Xian's program -- and are trying to track down Xian's neuropsych testing report, though it's pretty invalid by now (it was done in early March when she wasn't speaking much, couldn't hold a pencil etc.). They keep asking me if I've received any further results -- which I am not expecting to -- so it seems that they are just as puzzled as everyone else, though at least are observing Xian's 'quirks' and trying to see which ones respond to behaviour strategies. Seems rather 'hit and miss' --- eventually she'll comply but I often think it's when she's stopped having whatever weird sensory thing going on rather than it being the last strategy used. They've been trying to work on her tendency to plug her ears during music/sound events, and some of the 'eye' issues (shutting her eyes to block out stimulation), and while they know that she does have control over what she's doing, they also admit they don't know what's going on in terms of background causes. I'm happy to see others trying approaches I've tried and seeing that things tend to work pretty much the same as with me, I don't feel too bad about my attempts! So far they still seem a bit stumped about what should happen for her in terms of kindergarten---which probably increases the likelihood she can begin the school year in one of their treatment programs. Her memory and language issues are being documented, so hopefully that will lead to getting some speech and language support.

Have been getting a few leads on Lyme doctors in anticipation that we may run into difficulty getting treatment here if she does test positive. And, got the name of the psychiatrist who treated the local boy (he ended up being the one to prescribe the antibiotics), so will be going to Xian's appointment with hers next week well prepared. I figure if she can prescribe nasty antipsychotics without even blinking, maybe she'd be open to prescribing something else....hard to say. I'm busy printing out articles on neuropsychiatric manifestations of Lyme to bring along, so at least she'll have something to read!

1 comment:

Monique said...

So glad to hear that Xian is doing a little better. I sure hope they find out what's wrong with her, poor little sweetie. I read your blog all the time and am happy to see a bit of positive news. You are all in my thoughts and prayers.