Waiting for a Seizure

I’m sitting here late at night in an Edmonton hospital room watching the lines of an EEG dance across a small monitor perched on the wall above my son’s bed. There’s a live video of him in a small window in the middle of the screen. He’s sleeping peacefully now. I’m waiting for him to have a seizure.

Earlier today I helped a nurse hold him down on a bed for about an hour while an EEG technician glued electrodes onto his head. I was in his face for most of the time, my full weight on his body as he kicked and bucked forcefully. As I fed him constant words of reassurance and support he screamed for mercy, asking me to “help him”, “let him go”, and “get off me, Daddy!”

Both of us exited that room mentally wounded, having been so ruthlessly pitted against one another. At least he received a new hairdo – a sort of sloppy Buckwheat – from all the glue; all I got was another notch on the rod of parental guilt.

For good measure, at the elevator, he drew blood from my shoulder with a quick, vicious bite. I just let it go and gave him a kiss.

My son’s been diagnosed with epilepsy and the neurologists are trying to identify the origin of his rather unusual seizures. To do this they’ve tethered this highly active 2-year-old with about 25 feet of wire to an EEG machine in a small private room.

There’s a video camera on the ceiling, recording his movements, and a microphone to record his sounds. There’s a border of Van Gogh paintings along the ceiling, as if in homage to one of epilepsy’s most famous sufferers. My son must stay confined here for a period of undefined days.

The combination of media being collected will provide the neurology team with the data they need to produce a confirmed diagnosis and prescribe him the correct medication.

Credit for the invention of the electroencephalogram, or EEG, is often given to German physiologist Hans Berger. He cooked up the machine in the 1920s during a period of accelerated study into electrical activity in the brain.

It was British physician Richard Caton who first recognized such phenomena in rabbits and monkeys in the late 1800s. It wasn’t until 1935 that the EEG entered a practical laboratory environment at a hospital, however.

By measuring brain activity as a series of electrical impulses, EEG is typically used today to evaluate sleeping patterns and to investigate epileptic seizure events. The resulting measurements are often called “brainwaves”, although this term is apparently discouraged by the folks in this hospital.

The EEG system connected to my son’s head is being run on a garden-variety PC in a standard Windows environment. The small screen displaying his peaceful form could easily be mistaken for a webcam session. The scrawling electrical patterns might be considered the graph form an Excel spreadsheet, or a day’s worth of web site statistical data.

The Panasonic camera dangling from the ceiling is a relatively specialized piece of equipment, but you might find it elsewhere, perhaps in a security setting. And the microphone is not unlike one you might find on a reporter’s desk at the CBC.

Despite all this technical normality, the system is clearly significant. Its functionality and the information it is collecting will likely define the next several years of my son’s life, probably longer. This system will have a direct impact on his future mental capacity and neurological functioning. It will prescribe a ritual of daily struggles involving medication dosing, will help decide the litany of seizure-averting side effects he will have to endure.

Tonight and tomorrow, over the course of time as his brain approaches and then hopefully engages in seizure, this common system of contemporary technology will define my son’s future.

This idea casts a long shadow over everything I’ve personally ever done with a computer and related technology.

Perhaps I’ve once written some words that made someone think differently. Perhaps an analysis I composed resulted in a web site that made a moment of life easier for someone. Maybe, just maybe, I once managed to patch together a string of video clips that made someone browsing YouTube giggle enough to raise their endorphin levels for a second or two.

The arguments of Mac versus Windows, the processor megahertz myth, the iPod-mania, the stunning high definition graphics and surround-sound power of modern video game systems, all of this pales in comparison to this one system’s ability to directly impact my son’s future livelihood.

So as the cheerful and friendly nurses go about their duties around us, as the doctors come and go, pronouncing their words of knowledge and wisdom, as the arms of the clock on the wall slowly turn, I sit here, waiting for my son’s arms to twitch, his eyes to roll back into his head, and for his body to tighten and shake and spasm.

I wait for the EEG to record an electrical storm in his brain and define his future days.

First published in the Yukon News on Friday, July 14, 2006.

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3 thoughts on “Waiting for a Seizure

  1. Andrew, we miss you all so much.

    Whenever I ask Adele who her buddy is, she without hesitation responds “Cole’s my buddy”. And he’s gonna get the very biggest hug from her upon your return.

    Our sincerest love and prayers goes out to you, Cindy and that beloved, beautiful son of yours tonight.

  2. Just doing a search and came upon your blog. We’ve been on the seizure rollercoaster for just over a year now. 3 times now we’ve held our son down to have EEG’s done and wait for seizures. It’s an awful, ironic situation to be in. Don’t let the results dictate your son’s future. Epilepsy is a constantly changing demon. But, sometimes you get the upper-hand.

    Hang in there.

  3. I have been following your blog for a while now and just caught up with your son’s diagnosis. I wish Cole the best and thanks for sharing this with us here in the Yukon. It really puts things into perspective.

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