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EEG: Round 2

  • Posted on August 8, 2012 at 8:00 AM

So, we went to see the neurologist and I must say I was impressed—and that can be pretty hard to do when it comes to providing services for my kids. This is not to say, however, that I was pleased.

Getting there involved a lot of anxiety on Will’s part and none too little on mine, though for different reasons. (I’m not so good with going places I’ve never been before.) When the neurologist came in, the first thing out of Will’s mouth was “What language are you speaking?” To which the neurologist replied good-humoredly, “English,” in a rather pronounced Asian accent. I admit I cringed with that one.

His accent, however, did not impede our ability to communicate with one another, and the appointment proceeded at a rather rapid pace, with me providing information that was (for the most part) already in the questionnaire that I’d filled out, which he didn’t take until the end of the appointment.

The sum result of the visit is that he can’t diagnose Will yet. This is where the disappointment comes in. However, the reason is because he doesn’t have enough hard data, which is what impressed me. I guess I’ve just spent too much time listening to psychologists, for whom behavioral data is THE data, so I’m not used to actually needing conclusive tests.

And so the long story short is that the first EEG was not conclusive. The neurologist is not satisfied that epilepsy has been ruled out, though he did talk about the possibility of “frontal lobe seizures” without explaining the implications—he wants to know what we’re dealing with before he leads me down any rabbit holes (my phrasing, not his).

So, we’re going back tomorrow to have a video EEG which may require an overnight stay. The goal, once again, is to actually record a seizure event and we’re going to stay until we do even if it means staying overnight, which Will and I would rather not do for a whole host of reasons.

Wish us luck!



  • Posted on July 6, 2012 at 8:03 AM

Willy chose sooner, rather than later.  So, he went to bed right around his usual time.  Four hours later, I woke him up.  The three primary pre-EEG conditions were 1) four hours of sleep maximum, 2) no caffeine, and 3) clean hair.

The EEG wasn’t scheduled until 10 am the next day, so those eight hours of forced wakefulness were pretty rough.  Willy kept trying to go to sleep on me, but I couldn’t let him.  Willy told me he didn’t want an EEG after all, but that wasn’t a choice.  He said he wanted to heal his seizures all by himself and I told him “That would be wonderful, but we don’t know how.”  He said, “Well, I wish I had magic, then.”  I said, “You know, so do I.”  He folded his arms across his chest, harrumphed at me, and flounced away.

At this point he was more grumpy than anxious, which was something of an improvement.  At his doctor’s appointment, I’d used the pain chart to ask him how anxious he was.

He chose number 9.  He was scared that the doctor was going to send him to the emergency room and that he would die there.  I’m not sure where this came from, since his own emergency room visit went relatively well.  We reassured him, of course.  I did.  The nurse did.  The doctor did.  But Willy was unconvinced.  I drove him by the hospital the next day, showing him the big hospital and the (relatively) small emergency room wing, and showing that we’d be going to the big hospital for his EEG.  I found a YouTube video of an EEG and we watched it together.  We talked about seizures and EEGs.  All told, these efforts reduced his anxiety from a 9 to a 7.  Being sleepy and grumpy trumped anxiety and brought him down to a 5.

Seven and a half hours of grumpiness later, it was time to go.  We drove to the hospital, avoiding the entrance that shows the big red EMERGENCY ROOM sign.  When Willy got inside, he was in hypersocial mode, trying to introduce himself and chat up everyone in the waiting room.  I had to caution him against stepping in front of people who were in a rush to actually get some place, but otherwise I tried to let him do what he needed to do to make himself feel better.

The best part was when Willy introduced himself to two gentlemen who were talking in the lobby.  I knew who they were—rather, I knew what their function was—but Willy had no clue.  So, when the receptionist asked one of them to take us up to the next waiting room, Willy was shocked (imagine a cartoon-style performance, with bug eyes and dramatic gestures) and said, “I just met you!”  So, we explained that the gentleman was a volunteer who made sure people got where they needed to get when they needed medical care.  That eased Willy’s anxiety quite a bit.

Then, of course, there was the waiting in the waiting room, and that’s never good.  But finally, we got to the appropriate room, met the very nice and understanding sleep technician, and spent quite awhile getting Willy hooked up.  Getting him hooked up took longer than the actual EEG.  Even getting him unhooked took longer than the EEG, but the hooking up took longest of all.

She started with a wax pencil and a tape measure, making marks in the shape of plus signs to indicate where the electrodes should go.  Then she “erased” the center of each plus sign using an exfoliant, which she called a “scrubber” for Willy’s benefit.  Then, she gooped up the electrodes and stuck them on, placing a bit of cotton over them to hold them in place.  I didn’t count how many wires she used, but there were lots of them.  Finally, after all the electrodes were in place, we were ready to go.  She dimmed the lights.

There was a lot of closing and opening of the eyes, without strobes, then with strobe lights, then with progressively more “aggressive” strobe lights.  (I don’t react to strobe lights, but even I felt they were aggressive.)  Willy had a hard time complying.  At first, it wasn’t a problem, but towards the end of the strobe light session he wouldn’t keep his eyes open because “it’s messing with my brain.”  Willy was not at all comfortable with the idea of actively triggering a seizure, even with the technician and me right there with him.  Later, when it was time to try to sleep while hooked up to the EEG wires, Willy was especially uncooperative.  He feigned sleep, but he resisted actually letting himself sleep.  Even afterwards, he wouldn’t let himself sleep.  So, I can’t help but thing that, whether it’s conscious or not, Willy has some self-defense mechanisms against triggering seizures.

So, I’m not sure how productive the whole thing was.  I’m hoping they could see enough to tell if they had found what they were looking for even though they did not trigger a seizure, but the technician wasn’t allowed to indicate the relative success of the EEG.

However, a little birdie did confirm that the minor fugue episodes we’d been seeing were examples of seizure activity.  After the grand mal, I’d been working under that assumption—not that there’s anything I can do about it at this point—but the birdie confirmed it.  Like the technician, however, the birdie is not a neurologist, so it’s a birdie, because birdies can’t get in trouble for passing along information that’s above their pay grade, I mean medical qualifications.  Still, I trust the birdie.

Now that this part is over, Willy’s a lot less anxious, even though nothing has actually been resolved.  He’s still clinging to both Mark and I and he still needs a lot of emotional support, but his anxiety levels aren’t hovering around 9 anymore.  Now, it’s back to the waiting and the hoping that there will be answers that give us the power to do something.