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.