Score 1 for the Internets

From time to time, I get a random email or comment with a link or a condition name for me to check out in regards to the KayTar. I always appreciate people taking the time to think of our little mystery and pass along information they feel might be pertinent, even though we've (mostly) gotten to the point we've (mostly) accepted the questions we live with and (mostly) stopped pining away for that elusive answer. A couple of weeks ago, however, I had quite the influx of emails/comments all suggesting a single condition, mitochondrial disease. Weird, right? In fact, just as I was telling Josh about the weird Twilight Zone-ness of it all, I sat down to check my email and BAM! there was another one. So I did what any overly superstitious blogger mature, responsible parent would do, I emailed the pediatrician about it.

She knows about the blog, so I basically said, "Hey, the Internets told me to ask about this!" only with a bit more verbal camouflage than that, and she was kind enough to not even point out I was taking medical advice from people who I fondly know only as "anonymous". She even went so far as to hop into her forklift and haul the behemoth also known as KayTar's medical file to her desk for review. She's good to us like that. She said that KayTar fits some of the symptoms of some of the mitochondrial disorders, but not ALL of the symptoms of any. Still, she feels like looking into it might be helpful, so we will. Her neurologist (who we saw yesterday) said that we've tested her peripherally for mitochondrial disorders, through labs and such, but since she is headed to the OR (on November 4th, in case you missed the rescheduling update), he's going to order a muscle biopsy to get some more conclusive results (though they'll be look at things other than mitochondrial disorders, too). Now the OR to do list look like this:

Tonsil/adenoid-ectomies
G-button installation
ABR
Muscle biopsy

We like to multitask, what can I say?

The neurologist said it will take about two months to get the results back and even then we might not learn anything new, but he said there isn't a downside to having it done since she'll be having surgery either way. Two months, meh, big deal. We've been waiting years for a diagnosis, so what's two months? Just a blink, really. I almost didn't write about this at all. After last year's hope dashing debacle I'm reluctant to approach anything even mildly resembling hope, but I don't really feel hopeful about this, just curious. How bizarre would it be if my friendly little lurkers were the reason we happened upon her diagnosis? That would definitely be a story for Mystery Diagnosis. Heh.

So to YOU, my dearest lurkers, (yes, I can see you back there in your trench coats and dark glasses) thanks for the suggestion!

PS: While I'm tapping into the collective knowledge of the Internets, does anyone have any personal or peripheral experience with the BAHA (bone anchored hearing aid)? We're researching options for KayTar's increased hearing loss.