Jace's ambulatory veeg (video eeg)

I could kick myself for not taking a pic of the video camera for the eeg.

They made it sound... small...ish.

Funny, I expected Aidan's monitor box to be big, but it was tiny.

I expected Jace's camera to be small, but it was ginormous!

And heavy.

The reason you don't see it in this pic is because they gave me a wheelchair to cart it down on, and the wheelchair was to the side of me in the elevator.

Let me sort of set the stage...

I didn't even want to do this eeg.  I felt like we were wasting our time.  He's on Depakote, I haven't complained about it not being good enough, we're happy with the seizure control it's providing.

But his neurobehaviorist wanted to make sure the dose is right, and really wants to change med to Zonegran.  This is one that Aidan is on too.  It's the one that makes it so you can't sweat.  No thank you!  Why fix something that isn't broke?!  Especially with something that will cause other issues.

So...  I do it anyway, confident nothing was going to show.  He had told me not to make any changes, just do the test.  But when it was scheduled the techs asked me to sleep deprive him.  They like having them tired because they put up less of a fight.  From experience, I know this really doesn't help my boys, but bribery does.  (Notice that bear he's holding?  He earned it by letting them put the leads on without a fight.)  But I did it just like they asked, because I figured, well, it'll mimic stress that brings on the breakthrough seizures.  We can't do the up all thing anymore, period.  I can't even function on reduced sleep, let alone none at all.  So Daddy kept him up late and then I woke him early.  He ended up with less than half the sleep he normally gets.

Things seemed to be fine, once we got all connected I let him do DT with the dda for a couple hours.  They brought him home, I get everything hooked back up, and then tried to relax.  But I noticed Jace wasn't himself.  He was increasingly spacey, jerky, and seemed to be just uncomfortable and tense.  (The tension and spaciness he had before went away with the Depakote introduction.)  As the evening progressed I saw more and more upper body jolts, spacing, and then his eyes started rolling and deviating.  Now I was down right worried.  This is what Aidan does when he's spirally out of control in seizures.

We get Jace all ready for bed and situated.  Then I hear it.

He puked on probably half his bed.

And all the worry and stress and frustration with the whole situation flowed.

I threw a royal mommy temper tantrum.

All. On. Video.

Now I'm worried that the neuro will be so distracted looking at me and my tizzy fit, that he won't pay good enough attention to Jace.

Now the monitors are off, Jace has slept and slept and slept, thanks to the oil.   And is slowly recovering.

Now we wait for 2 months for the result.  Unless he just sees our names and doesn't even look... the neuro that's reading it is less than ethical, (was one of their old neuros) so it would not surprise me.  Which is why I'm getting my own copy. ;)