Sunday, March 22, 2009

Some good press

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.

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.

1 comment:

Marcia said...

Hello Linda,
I am so very glad to hear that Xian continues to make wonderful progress and that you continue to be an amazingly fierce advocate for your daughter and for the many others who struggle or will struggle with this insidious disease.
Please keep posting when you're able. I continue to consider it a privilege to follow Xian's return to living fully and to see the extent to which your Mother's love of Xian is bringing you through this journey of venturing into a whole other world of science and medicine, to struggle through the overwhelming complexities of it all, and then marveling at the breathtaking results.
Blessings to your family,
Marcia (a fellow SWT group member), happy Mommy to Sara Marina (age 5 1/2) and Kate (age 3), both adopted as infants from Kazakhstan