This is what we do now. We watch Schuyler, and we wait for signs that she's having absence seizures, or not having seizures, we wait to know if she's going to be okay, or in what ways she's not. This is who we are now, both of us. I'm not an author, I'm not a father or a husband or a friend or whatever else. I am a watcher. It feels like it's all I do now. And honestly, at least for the past few months, it really sort of is.
Tonight, I saw Schuyler have an absence seizure, I think. I don't know, because without an EEG being administered, and administered at the right moment, we can't know for sure. But tonight, as we shopped at Target, I looked down and noticed Schuyler staring in front of her, mostly motionless except for a very very slight movement of her mouth that I may very well have imagined. I only observed her staring for maybe five or ten seconds, but she could have been doing it for a little longer. After she came back from whatever place she was visiting, she was drooly and crabby and seemed confused for a few minutes. Then she shook it off. Shortly after that, she suddenly needed to go to the bathroom. She went again before we left the store.
Later, after we got home, she suddenly ran to the bathroom again, this time having a very small accident before she got there. Neither of us were watching her that time, but based on her behavior after, I suspect she probably had another absence seizure.
Schuyler is confused by the ways that her body is suddenly betraying her. She doesn't understand it. Just the early puberty stuff alone is blowing her mind, after all. Add to that the further loss of control that she seems to be having, and you end up with a little girl who is frustrated and frightened, and who, when pressed for information on what she perceives, lacks the descriptive language to explain.
"My head feels weird."
"It's my little monster."
"My brain is mad at me."
Well, I don't know. Perhaps she does a fine job of explaining, in her own way.
In a few weeks, Schuyler will visit her neurologist, and hopefully she'll get another EEG, perhaps another extended weekend one where they glue a bunch of wires to her head and wait, like a hunter watching a trap from a blind. That's the best we can hope for, that something will happen during this tight window of opportunity. An author friend who has experience with absence seizures brilliantly described it as "like trying to take a polaroid of a ghost". That's perfect.
And it may all be nothing. It's feeling less and less like nothing, but then, watching for this particular phantom is making us twitchy and paranoid. We find ourselves falling into the oldest cliche, repeated endlessly by countless parents of broken children.
"We just want an answer, even if it's bad."
We said that before, when we had no idea of the severity of Schuyler's monster, and ultimately we didn't end up feeling quite that relieved once we got that answer. If this new monster introduces itself one day with a full blown grand mal seizure, I guarantee we won't be grateful to KNOW then, either. But the uncertainty wears you down. The watching, and the waiting.
Do you know what I miss? I miss being a funny writer. There was a time, long before all this, long before I discovered what I would be writing about and worrying about for the remainder of my life, when I just wrote funny stuff. Jesus Howard Christ, I miss those days.
My wife, Carole, who has temporal lobe epilepsy, has done the "week with electrodes glued to her head" thing three or four times. When she first did it, the wires were attached to a large cable hanging from the ceiling of her room in a hospital, and she had to unplug herself every time she wanted to go to the bathroom. She also had CCTV cameras watching her 24x7.
ReplyDeleteWhat I am trying to do, in my borderline-Aspergers awkwardness, is convey that I know where you, and Schuyler, are coming from at the moment. Our thoughts are with you.
My older daughter Kat had partial complex seizures for years and years. They originated in the temporal lobe. We knew for sure that she was having them when, one night on vacation in a different city, they generalized into a tonic-clonic (which used to be known as a grand mal) seizure.
ReplyDeleteAt first, I experienced the watchfulness that you are describing. Eventually, I realized that the general frequency and severity mattered but that it did not matter to identify each individual seizure. Worse, my focus on each seizure was not healthy for Kat. Kat needed me to spend more time looking at the growing young woman inside and less time looking at the seizures.
I gulped and did a crazy, scary thing. I let go a bit. I let go of the constant watchfulness. Oh, I still had my moments. But I refocused on my daughter and not on the seizures. They affected her, they got in her way, they needed multiple medication trials to get some control, but they were not the most important thing and they were not HER.
Letting go of the watching was crazy, scary, and the best thing I did. I planned but I refused to spend a lot of time focused.
Your mileage will vary but I wanted you to know that my thoughts are with you and Julie and Schuyler (but not with Polly and not with the likely seizures.) Hang in there. You'll handle this one too.
{{ hugs }}
ReplyDeletenothing else to say, but that I think of you three all the time.
Wow. I'm so sorry. I don't want to read more into Schuyler's symptoms than I should, based on Megan's history, but that does indeed sound like absence seizures, almost a complex partial. Megan would make funny chewing motions with her mouth and stare off then come out of it and start playing again and we were told that's a complex partial. I had no idea at the time they were seizures. We weren't smart enough to know that they could look like something other than a "grand mal", and Dr's would ask us if she was having seizures and we would blithely say no. Until she had a grand mal. Now that happened at age 4, much younger than Schuyler. They did an EEG and it showed unusual activity, but she did not have an outright seizure during. But they recommended trying Trileptal, based on the grand mal (tonic/clonic) and the activity they saw. It did make a huge difference - those little seizures went away. Teachers saw a dramatic difference. However, every time she has a growth spurt, the seizures can come back and we have to increase her dose. Being sick, tired, or overheated lowers her threshold. We go for months, even years, without worrying, then it is back. And when it is back - the constant watching and waiting and worrying is torture. For us it's only until the med gets it under control again or the virus passes. But even then it's bad. I hate that you're dealing with something similar now. It's the worst. I hate to say, but you should be careful if Schuyler is bathing or swimming without constant supervision. You're all in my thoughts. Sorry I don't have anything cheery to say.
ReplyDeleteI'm sorry. I'm sorry for Schuyler, for you and Julie. I hope that if she is having seizures that they're easily treatable. And I hope that if she's not having seizures, that you will still find an answer to the problem and that the problem can be easily fixed.
ReplyDeleteIt does sound like a seizure, from my experience, but I am clearly not a doctor. I am however the mom of a child with a similar monster in her head, who is always "on watch". I hope her EEG gives you some answers, either way. Hopefully she will have one of these episodes while hooked up. If she's anything like my stubborn girl though, she will do perfectly through it and then seize the minute you get in to the car in the parking lot!
ReplyDeleteWhat @CarolAskew said rings a bell with me as well. Ricky has had a couple of tonic-clonic seizures. Within the past few years he has had some complex partial ones as well. Late last year I thought he was having absence seizures -- and they appeared much as you describe Schuyler's. He was drooly and crabby afterward too. But when I mentioned them to the neurologist, he said that absence seizures are super specialized and more rare than you would think, and what we were seeing was more than likely actually complex partial seizures. Just our experience, YMMV, but you might want to ping the neurologist on this. Trileptal has worked very well for Ricky. He's in the midst of a growth spurt and finally entering puberty at 15, though, so I'm guessing we'll see stuff again and he'll have to have a dosage increase.
ReplyDeleteI'm sorry you are having to deal with this but I'm sure you are doing it with your usual, um, aplomb. :) Plus, you are still funny! :)
I'm so sorry. That must be terrifying.
ReplyDeleteLong story, short: My name's Sam (like the monster in one of your blog entries. I worked at Legacy Books, but remember being out of town when you came for an author event. Fast forwarding to the present, I teach in Carrollton and work at A Real Bookstore. A few weeks ago, I was shelving at the store, eyed your work and recalled your visiting Legacy in my absence. I went to your blog (conveniently listed on the back cover) and stumbled upon your Nov. 20th entry. It seems I've missed you guys at least twice now! I bought your book (which I believe is the same copy you're holding in the photo) and am currently half-way through. Delightfully funny and splendid storytelling to say the least.
ReplyDeleteThank you for keepin' on,
-S.
P.S. Photos or it isn't true, right?
http://dl.dropbox.com/u/392526/DSC02686.JPG
http://dl.dropbox.com/u/392526/DSC02687.JPG
Sam, that is very very cool!
ReplyDeleteI miss him, too. But this is life and what can you do?
ReplyDeleteSomething to consider, and please don't freak out or hate me for saying this, is that it might be small bouts of psychosis. I may be completely wrong but that description sounds familiar and anyone with any kind of brain impairment (even simple MR) can get psychosis when puberty kicks in and the hormones start rolling. Psychosis can also be a component of certain kinds of seizures.
ReplyDeleteMeg,
ReplyDeleteHating you? Absolutely not.
Freaking out? Uh, yeah, a little. Not a possibility that had occurred to us, mostly because it's not on the table of usual manifestations for PMG. But something to keep in mind for sure.
I'm not an expert by any means, but I had a lot of "spells" like that around puberty (which no one really picked up on at the time; my hindsight is 20-20) and I get them now as an adult (with crazy hormonal swings) less frequently and learned that it's actually a migraine. Some migraines are "electrical" like a small seizure (treatment is the same drugs as seizures). Nothing has ever shown up on an EEG or MRI or CT scan for me - no extra activity, no tumors, etc. - but I know now to be aware of them. I usually get 15-20 second staring spells and I've never had a bladder incident, but a lot of migraines (due to the crazy wiring of the human body) are wired with the nerves in the abdomen and aorta, and so a sudden blip from my brain can make my intestines go funky in 2 seconds. So it could be something more benign-ish (and harder to see) than straight-forward seizures.
ReplyDeleteStill a bugger, no matter which way you slice it. I just wanted to toss it out there that it could be something like migraines. There are lots of painless varieties of migraines (can cause blurred vision or temporary facial paralysis, etc.) that are monsters in their own right. It might be another option for your neurologist to consider. There are lots of medicines and stuff that only target migraines and have low/no side effects and won't cause collateral damage (lots of seizure meds can cause seizures).
Good luck to you!
My 10 year old daughter was recently diagnosed with absence seizures, and the other day she told me a secret: she knows when she's having them, because it's like she is suddenly asleep, and then awake again.
ReplyDeleteWhen she experiences them they almost always manifest differently. Sometimes she just stares, sometimes she mumbles, sings, chews, her hands work and twitch, she stops walking if she's walking and sometimes she keeps walking but it's more like a stumble. Sometimes she looks stoned with her mouth hanging open, sometimes one eyelid is slightly more closed and the other is open.
We've witnessed these for about a year or longer, and when they seemed to be getting worse, lasting longer and more frequent, I took her to the family doctor where she experienced a handful while talking to the doctor.
We're scheduled to see the neurologist for the first time tomorrow. I'm nervous (okay terrified), but it'll be good to hopefully learn something.
It's nice to read about other parent's experiences with these, since I'd never heard of petit mals or absence seizures at all until after some research, which is how I found your blog. Please keep up the great writing, and thank you.
If it's any consolation, I thought the account of your confrontation with the printer was amusing...
ReplyDeleteHaving done overnight EEGs and innumerable other tests, I know very well what it's like to not know what you're up against. Alas, all too often these appointments and evaluations, that we put so much energy and hope into, end up being so inconclusive that one is left wondering whether anything was accomplished at all. And then another day dawns and some more good, or scary, or unpleasant things happen.
Saying "this is life" seems hollow and yet, as time goes on, I believe more and more that it bears some meditation. While I definitely believe in improving whatever can be improved, I guess we're supposed to like this arrangement. Or at least we might as well try to like it.
I'm really, really sorry you are going through this. I don't know what else to say, except I hope things look up for you and your beautiful daughter soon.
ReplyDeleteI hate to be the idiot who knows nothing but offers advice, but have you looked into EEG biofeedback? (also known as neuro-feedback) We used it in hopes that it would help my child's language processing speed - but my understanding is that it's useful for preventing/controlling seizures.