Wednesday, May 9, 2012

Well That Sucked.

You know how sometimes you worry about something sucking, and people tell you, ohh, it'll be okay!  And even though you know they're wrong and it's going to suck, you start to hope they're right and you're just being a pessimist?  BUT THEN YOU WERE RIGHT AND IT SUCKED?

So today's EEG!  Was. A. Disaster.  I knew it would be, and it wasn't about the sleep deprivation.  That part sucked for us but not at all for Grace.  She was totally happy to stay awake until midnight (and I"m pretty sure I fell asleep before she did) and when Stephen woke her up at 4am, it was relatively easy.  The part I knew would be ugly was the EEG itself.  Grace hates having her head touched at all- brushing her hair is an exercise in patience, to put it mildly.  Combine that with all the trauma between last week's MRI and this week's ER visit, and the kid is DONE with doctors and procedures.

They tried to make it easier, they really did.  She was just in that zone- you know when your kid gets in that brain space where you know that absolutely nothing- no talking, no patience, no bribing, NOTHING- is going to get through to them?  She was there.  We ended up wrapping her in a sheet while the tech stuck the leads on her head as she arched, writhed, kicked, wiggled her hands free and started scratching, bit, spit, you name it.  She was like Linda Muthaloving Blair.  I hoped once the leads were on, it would be okay.  It was not.  I was able to distract her for one episode of Dora and a few rounds of Cut the Rope (or whatever the stupid game is called), so they were able to get some good awake recordings, but she never fell asleep.  Not for a second.

Here's a little EEG background for the uninitiated: you need to be sleep-deprived beforehand for two reasons.  One, to stress the brain and make it more likely to have seizures.  Two, because it's really important to see the transitions between sleep and wake, and get sleep recordings.  Nobody would sleep in an EEG lab with wires hooked up to their heads if they weren't extremely tired, least of all a little kid.

You would think a three year old who only got four hours of sleep would fall right asleep in a cool, dark room, but then, you're not Gracie's mom.  It did not happen.  As the neurology attending who reads EEGs would later say, "she didn't even get DROWSY."  (and yes, you can even tell that from an EEG, which I think is so cool.)

So.  Her awake EEG was totally normal. Which is GREAT.  But the lack of any sleep recordings is an issue, because the most likely diagnosis for her would need some sleep recordings to confirm or deny.

...but maybe she doesn't have that at all.  She doesn't fit ANY classic pattern.  What we know right now is that her MRI and her awake EEG are both very, very normal, and that is supposed to be reassuring.  And in my rational moments, I know that is true.  If someone else were telling me this story, I would very, very sincerely tell them not to worry.  But it's not someone else, it's me, and I'm a neurotic mess.  So I feel a little better...but only a little.