December 15, 2008

Monster hunt

Originally uploaded by Citizen Rob
In real life, events do not wait for the proper moments in perfect chapter order.

There are really two things going on right now that are taking most of my attention. On one hand, my book will be released in trade paperback on January 6th, followed shortly by new author appearances at a number of locations. For the paperback, I'm trying to focus on independent bookstores and want to visit different parts of the country where so many of you who have asked might actually be able to attend. (I'm looking at you, San Francisco.) Two days after the book release, I'll be at the amazing new Legacy Books here in Plano.

(If you live in the area, you should really come. The store is huge and beautiful and has a liquor license. And as an additional bonus, my lovely friend Monique van den Berg will be there. She's an exceptional and popular writer who was kind enough to contribute study guide questions for the paperback edition of Schuyler's Monster. I suspect that between Monique and Schuyler, I will be the third biggest audience draw to my own signing. I can live with that.)

So that's the week of the paperback release.

The day before the book release, Schuyler has an EEG, to determine if she is having absence seizures.

Okay, so let's talk about the seizures.

The test itself should be interesting. It's called a "Sleep Deprived EEG", and that's exactly what it is. The night before, Schuyler is not allowed to sleep more than four hours (and preferably not at all), which of course means that someone will have to stay up with her. Given my regular insomnia, the job will fall to me. Julie will sleep and be ready to do all the driving (and listening, and thinking, really) the next day, and I will be up with Schuyler all night, probably watching monster movies and whatever else I can think of. When she's a zombie the next day, I'll be there with her, hungering for brains.

The next morning, neurologists will glue little sensors all over Schuyler's head, flash some lights in her face and then send her off to sleep for an hour or so. The idea is that the lack of sleep and the fancy light show will trigger seizures that will then be recorded by the EEG. (Remind me to add Speed Racer to the all-night film line-up; it's one of her favorites, and if anything will trigger seizures, it's that movie.)

The problem with this test is that it can only prove a positive, not provide a conclusive negative. If she has a seizure during that hour or so, then we know she's having them. But if not, all it means is that she didn't have a seizure during that time period. After that, if nothing was seen, I believe the next step is an ambulatory EEG, in which she is wired up to a portable sensor unit like a little laboratory capuchin monkey and sent into the gawking world for twenty-four hours. I have no doubt that Schuyler would love that. She flies her freak flag higher and more proudly than anyone I know.

So that's what's next. If there's a little monster waiting, we will flush it out. Well, I shouldn't be overly dramatic about this. We don't actually know that she's even having absence seizures at all. She turns nine this coming Sunday, after all; there's a condition that that causes an inability to focus that many nine-year-olds suffer from. It's called being nine.

There are people who are very close to Schuyler and should know better who are perhaps in bit of denial about the possibility that she's having seizures. I understand that impulse, I understand it completely; I'm fighting it myself. There's a numbers reality here, however. We've known for five years that Schuyler had a ninety percent chance of developing seizures, and ninety percent is pretty high.

That means that in a world population of -- what, almost seven billion people? -- there are maybe a thousand that suffer from bilateral perisylvian polymicrogyria. So really, what we're hoping for is that Schuyler is going to randomly join a group of about a hundred people in all the world, the ones with BPP but no seizures.

I'd love to think that could happen, and it absolutely can, but still, you know? Julie and I talked about this the other night, and we were a little surprised to find that both of us had a secret, shameful wish. We both confessed, almost in a jinxy, simultaneous way, that we were both sort of hoping, maybe just a little, that Schuyler's EEG comes back positive.

I know, that sounds wrong. It feels wrong, really, but there's a harsh reality behind that wish. If Schuyler's EEG comes back negative, and the subsequent battery of tests also show that she's not having absence seizures but is just a spacey little kid, that's good news. It means she still has a chance to be one of that hundred.

But if you are willing and you are capable of looking the statistical reality in the face, then what a negative EEG most likely means for Schuyler, and for us, is a return to the waiting game. In my head, I envision us grabbing a magazine and the tv remote, scooting our cool red couch back under the swinging Sword of Damocles and sitting again. Waiting.

If that monster is coming, we're tired of waiting for it. Get your ass here already so we can go to work.


Mete said...

"Get your ass here already so we can go to work."

That was EXACTLY how we felt for 2 years, waiting for what the doctors told us would be the most-likely-inevitable frequent seizures that were coming for our son... "some day".

For two years, I lived in constant fear. I was so scared of what they'd be like, and how they'd affect him, and what would happen if we missed the signs... I never anticipated what a relief it would be when they finally came. At least we had something to fight against, rather than an invisible and anonymous demon, coming to attack us at any moment.

*Tasha* said...


I've been reading this for awhile (but not THAT long, maybe 2 weeks). I was fascinated and kept reading. So finally I went, "Geez, why don't I just read the book since I've read back pretty far?" So I did today. It was great- especially with how hard you and your wife worked to get Schuyler's educational support. (That sounded so... geeky. I hate that phrase.)

I understand, because my own parents did that for me. I hate to think where Schuyler would be if she didn't get transferred. She would still be her strong self, but they would've started to break her down a bit.

I was born TOTALLY deaf in both ears. Basically, you could blow up a bomb a few hundred feet from me and I would only hear it very quietly. Good thing I don't live in a country where there are a lot of bombs.... although I don't know if it would help being able to hear one, AFTER the fact. ;)

Anyway- I'm 19 now. I don't really speak. I'm starting to hate sign increasingly just because not everyone understands it. Don't get me wrong, it's been very useful and helpful but I wish I didn't have to depend on it. So I got a cochlear implant. Boom- now I can hear that bomb and not just that, but a whisper, the wind... I still have to learn how to speak and learn sounds though. Years of work, so who knows.

I know I'm "broken" and while some people objected to me trying to "fix" myself, I can say it's been the most frustrating but best thing I've done. I know you can't "fix" Schuyler (please, people, don't get mad at me for using that phrase)--- and I wish there was a way to eliminate the lurking potential-monster once and for all. I hope it goes well. Perhaps she will be one of those 100. I really have nothing to say further though regarding that except: Speed Racer? Ha. No kidding.

Also, have you heard of paka-paka? Wikipedia it if you haven't.

Here's a link to a banned paka-paka pokemon episode that actually caused seizures in people prone to seizures.

I have to say, the warning and hype is so impressive that I actually get scared I'll have a seizure and I have no history of that. So... use at your own risk!

*Tasha* said...

Oh, and skip to the 1:09 mark. All the buildup before the actual showing is ridiculous. The warning is well-displayed but probably adds an extreme level of suspense. :P There are better quality-videos of this clip out there. See the "related" videos for them.

Monroegirl said...

WORD! I have that feeling about Mas, too. If there's bad news lying in wait on the horizon, bring it! I completely understand where you're coming from. I also wish you the best on staying up all night...I had to deprive Mas of sleep for a regular ol' EEG just once, and I still remember it. Not a fun time for either of us. At least you can reason with Schuyler. Hope you get the news you (I think that's an add for our local CBS affiliate...sorry to plagiarize!) In short, if she's seizing, I hope like hell that they find it.

Malcolm Gin said...

Bless you for all your hard work for Schuyler's sake. My parents worked similarly hard for me as I grew up with serious chronic asthma (this is actually a medical term) and allergies.

Mostly I just wanted to say that I also enjoyed Speed Racer and I agree about the over stimulation. But I'm 40, and not prone to seizures, however much I enjoy a good super-saturated flick with lots of visual stimulus.

I am so impressed by your family's courage. Keep on keeping up the good work!

Julia O'C said...

It's not wrong to want a conclusive answer (and one with treatment options - bonus!). Waiting for your life to explode is harder than dealing with the aftermath. At least, that's been my experience.We knew about my son's abnormal brain 5 months before he was born and no one would tell us anything except that termination was still an option. The waiting and the not-knowing was a million times more horrible than the reality of him. You and Julie want a concrete answer so you can deal with it. I get that. I think most people would, too.

Also, a book store with a liquor license? That's like my best, most secret fantasy come to life.

Anonymous said...

Sleep-deprived EEGs are a special kind of hell, no doubt. Our girl had one when she was 15 months old. My husband and I both stayed up all night watching Elmo DVDs with her and worrying our asses off. Then, later that day, the neurologist dropped the bomb--our kid has epilepsy. We were floored. Shocked. I cried--and the doc looked at me like I was a Martian.

Flash forward a couple of years...her seizures are controlled by medication with no side effects.

Not exactly a bright side, but bearable.

Anonymous said...

I know, "only a dog," but I can relate to a similar wait and worry. We adopted a five-year-old dog, now seven, who had a history of terrible seizures. Long expensive holiday weekends spent at emergency vet hospitals. She hadn't had a seizure since we got her, and I'd like to think it was because we were so diligent about her improved care and all the supplements. And then one day she had two short absence seizures, a lot like what you described recently, accompanied by acting like she had a really bad taste in her mouth. And that was it. Nothing since. But what a relief to know that THAT was what a seizure could look like. Best of luck to you all -- knowledge is power, and having a plan of attack is always very empowering.

Anonymous said...

We have been pretty sure for a while that our little one (age 3) has been having absence seizures. We did the sleep deprived EEG -- had to travel to the nearest big town (1.5 hrs away), stay the night, keep little guy awake. The outcome? He didn't have a seizure during the test. So we still know nothing. Totally bites. Our doctor isn't very pushy about additional tests, either. But one word of advice -- the goo that goes on the head is sticky nasty stuff. Take good shampoo.

DESJ and Company said...


I was SO happy when my Dovi was diagnosed-give me a diagnosis, and I can give you a plan.

I can do anything with a plan.

Azul said...

I absolutely understand. Sometimes, the not knowing is worse than knowing.

My best to you and Schuyler.

Anonymous said...

I understand your fear. My daughter Emily is a 7 year old with Mowat-Wilson Syndrome (those with this diagnosis also develop seizures 90% of the time). She had 2 grand mal seizures in 2004 and one more in 2005. She has been on trileptal and has now been seizure free (knock on wood) for over 3 years. We are taking her for a sleep deprived EEG next Monday to see if we can talk about weaning her off of medication I would like to see that, but it also scares me to think that this may cause her to have more seizures. I guess you can only take it one day at a time. I wish you all the best!

Nightfall said...

When I was a kid it seemed I'd had more EEGs than hot dinners. ;-P At least the glue they use these days isn't as nasty or hard to remove as the clay they used in the 70s. The neurologists were considerate enough to observe St. Patrick's Day with green clay one time... very funny. I think what they use now is easily removed with acetone, kind of like superglue. If it isn't actually superglue.

Rebecca said...

Best of luck for you sleep deprived EEG. My daughter had one a few weeks ago, and it back fired on us! She was SO exhausted that she didn't have any seizures. She was just way beyond tired. We had a 24 hr last year. It was a pain! Our hospital doesn't have a portable one, so we were stuck there...The wiring at least got her into the bathroom...but that was about it! I hope the sleep deprived shows something, so you can forgo the 24 hour. And if it does show something, I hope Schuyler's seizures are easily treated with medication and no side effects.

CharmingDriver said...

I hope the math is on her side; if when she was diagnosed she was only the 41st, maybe there is a good chance she can be in the vaunted 100 that are seizure free. Obviously, there is exactly no science behind that reasoning, just a want for your daughter to have the best life possible.

But, in the end, I also get yours and Julie's want for an affirmative diagnosis not just, ''nope, she's fine, today''.

Anonymous said...

The usual orders-of-magnitude apology here, but I know what you mean. We're waiting to find out if our 3-year-old needs to have his tonsils and/or adenoids out, and the waiting is murder.

We had a wait of a rather higher order of magnitude when he was much smaller, and got diagnosed with craniosynostosis, i.e. the premature closing of skull sutures. In his fairly rare case, he did not have to undergo major neurosurgery, as only two of his sutures had closed.

But there was a rather long period of time where we didn't know that, and the dread of ambiguity weighed on us like a lead overcoat. I hope you get answers soon, whatever they may be.

Galen said...

I understand so well that feeling of living under the swinging Sword of Damocles. With me, it was waiting to see if my son Gabriel developed schizophrenia, for which he had a strong genetic predisposition. Sometimes when he was a kid and would do something weird, I couldn't help looking at him like he was a time bomb, ticking away. Yes, it's good to have an answer, but I'll still be rooting for the 10% odds for you guys. (Have fun with the sleep deprived least Schuyler is 9 and not 12 months old. When Gabriel had one at that age, I felt like I was torturing him, trying to keep him awake in the car all the way from Fort Worth to Dallas.)

Lucky said...

I feel your anxiety and fear. We had our 2.5 year old daughter with BPP admitted to Children's Boston last week for what I thought I was seeing as absence seizures- 24 hour EEG, and nothing- all came back negative. So what were those "spells" I thought I was seeing 20 times last Sunday night?? So we live and wait again.

little.birdy said...

I know you what you mean, about just wanting to KNOW. I hope you find out something conclusive soon. Have fun stayin' up all night watchin' cool movies!

Melissa said...

I hope you and Julie get a satisfactory outcome, whatever it may be.

And there's a lovely independent bookstore right here in St. Louis (Left Bank Books) where you know someone with a very nice guest room. And a seriously awesome "museum" (the City Museum - check it out) that Schuyler would lose her shit over. Just saying.

Bluestem said...

I hear Chicago is very nice this time of year. For, you know, book signings and the like. If you generally have them indoors.

Karen said...

I understand the desire. It's not as if you wish she had seizures. It's just that you wish for something specific and concrete so that you can move forward. If the test could tell you that she isn't having seizures and will never have them, we all know that that's the result you'd be wishing for. But the only concrete answer you can get is a bad one. So your choices aren't good news or bad news, they're no news or bad news. It's only natural that you'd rather get the worst over with.

Ellen Seidman said...

Rob, I know exactly what you are feeling, I would rather just be sure about the worst so we can attack back. Just tonight I came home to a note from the nurse at Max's school in which she basically suggested he was having absence seizures so now, we wait, too.

Matilda said...

In the immortal words of Mr. Plow: "The Waiting Game sucks! Let's play Hungry, Hungry Hippos!"

So I'm thinking of using _Schuyler's Monster_ in my Medical Anthropology class in the spring. The timing of the paperback release has probably sealed it.

adequatemom said...

I can absolutely relate and SO get what you're saying about the conclusive positive/inconclusive negative result. I always just want to KNOW, dammit, even if the news is bad. Waiting and wondering sucks the big one.

Whatever comes of her EEG, it sounds like you and Schuyler are going to have a fun night beforehand! Best of luck, and keep us posted when you can.

Justinich Family said...

I have a 4yr old with BPP and I felt the same way about the seizures, and he started having visible seizures in January 08, so far they have been pretty well controlled with meds. He has had about 7 this year that I can say for sure are seizures. His first EEG came back abnormal but no seizures, 2nd 72hr EEG came back with seizure activity but not yet seizures, 3rd 24 hr EEG came back as a lot of seizures and/or activity mainly at night.

Anonymous said...

We went thru the 48hr EEG with our now 7yo son over 2ys ago. It came out positive in his case, Complex-Partial Seizures.

One of the uneasiest things about the EEGs is how the electrodes are applied. The Techs use a glue that smells strong and they use gloves to make sure that their hands don't come in contact with it.

It'll probably take several a few days for the dried glue to come out of her hair completely. You may want to bring a nice hat for her to wear for the way home.

I wish the best for all of you.