Saturday, August 2, 2008

About the seizures

Time for another piece of introduction to Joy's complex medical situation: the seizures.

The first thing to know is that "seizures" and "epilepsy" are pretty well interchangeable terms. If you have more than one seizure, you're considered to have epilepsy.

What is a seizure? According to the Epilepsy Foundation,

A seizure happens when a brief, strong surge of electrical activity affects part or all of the brain.

How many people have it?

By 75 years of age, three percent of the population can be expected to have been diagnosed with epilepsy, and ten percent will have experienced some type of seizure.

Up to 70% of epilepsy is "idiopathic," having no diagnosed cause; up to 40% of people with autism also have epilepsy.

The first seizure that we noticed happened at a family gathering in July 2005, when Joy was 14 months old. In her grandparents' living room, sitting on the floor in the middle of a roomful of conversation, she suddenly "zoned out" and sat there quivering for what must have been over half a minute. Then she "came back" and everything was fine. We shook our heads, commented on how weird it was, and that was all. The second one was like unto the first, several weeks later at a noisy restaurant dinner -- zoned out in her high-chair, with a slight tremble. If I'm remembering right, she got pretty snoozy afterwards too.

Those episodes were enough that I mentioned them at her 15-month pediatric appointment. The pediatrician was sufficiently on the ball to get us scheduled for an EEG with a couple of weeks, which was very helpful because during those two weeks, we started having daily episodes. The daily episodes were a little different. Joy's arms would jerk out to her sides, and she'd get a startled look and whimper a bit. Then a few seconds later, another jerk. These sequences lasted up to a minute at a time and were mighty disconcerting to all of us!

We were pleased to discover that the pediatric neurologist on duty during the EEG was someone we already knew. He made a special point of coming in during the actual EEG (rather than just reading it later), and though Joy had no visible seizures during the EEG, the pattern was such that he could tell right away that there was abnormal electrical activity going on in there.

The very first medication at the very first dose was a big initial winner. The visible seizures disappeared, so thoroughly that the neurologist had us come in for another EEG four months later to see if the underlying pattern was gone too! (It wasn't.) So the medication stayed, and the only side effect we identified was that we're pretty sure it made Joy more hyper than she'd otherwise have been.

Unfortunately, the seizures started to re-emerge about a year later, early fall 2006. At first we weren't even sure we were seeing them, just a little seizure-y flicker out of the corner of our eye, and a passing thought, "Hm, I wonder if she's about to have another seizure." Her neurologist confirmed that we probably weren't imagining things, and before too long we were back in the world of stronger, longer seizures. As they got stronger and longer, they looked like this: Joy's arms would fly out to her sides, and her face and body would get stiff. If she was standing, she'd topple over. She'd stop breathing for a few seconds, enough to make her face turn red. (Later, it sometimes got long enough to make her face look blue-ish, and she'd drool and convulse a bit too; right now, we're pretty much back in red-faced territory.) After she comes out of the seizure, if it's a short one (10 seconds or so), she may pop right up and go about her business. If it's longer, she may be cranky for half an hour. If it's a blue-face one, she may be exhausted and limp for half an hour, then inconsolable for the hour after that.

So our little neurologist-plus-family team started juggling meds -- first increasing the original one, then adding another, then removing the original and adding a third, then tried to remove the second (NOT good), then re-upped the second and removed the third, then added a fourth. We also tried a low-glycemic-index diet along the way, sort of an Atkins-diet treatment that was supposed to stay just shy of ketosis, which we followed very faithfully but without any decline in seizures.

We're still on the "second and fourth" combo, which puts us into manageable territory, with no side effects that we're aware of (an immense blessing). We've had some very fine stretches, including something close to a month in April when we had no visible seizures at all. The day the seizures came back, though, we had SEVEN of them. More often, the daily record on our calendar looks like this: 0, 0, 1, 2, 1, 0, 0, 1, 0... This summer we've noticed a tendency to have more seizures during travel. The lake-vacation calendar went: 3, 2, 2, 4.

We never know when a seizure is coming on, so climbing-play (which Joy loves) and park playground equipment and swimming lessons are all somewhat scary things. Fortunately, however (touch wood, quick prayer, avert! avert!), we've never needed an emergency room trip, either for the seizures or a resulting fall.

Right now, it's just part of our daily adventure with Joy and all of who she is.


Niksmom said...

definitely touching wood and said a prayer for no ER visits! we almost had a few of those when nik was still in school and fell head first into a concrete wall. school staff couldn't exactly tell if it was a seizure (his are absence/petit mal) so they didn't tell us about them until the end of the day. (one of many reasons we pulled him out of school last year!)

we also went through a nightmarish 18 or so months when his combo of meds was causing such horrible side effects; no one (including his now-former neurologist) realized it was the meds so they kept throwing more meds at the problem to releive symptoms---only to make it worse. we're back down to one med being increased and the second being weaned...and seeing such fantastic diffrences in nik's alertness, coordination, social interaction, etc. he's still autistic but he's functioning much better on a day to day basis! And the mysterious pain he used to have (from the meds!) is GONE.

mama edge said...

We got lucky with our third medication, and though my son has small spikes several times a day, no (wood/avert) big blue-lippers, as I call them. Has your neurologist talked with you at all about Vagus Nerve Stimulation down the road? My son's almost old enough, and it may be an option if his current med (more wood) stops working.

Trish said...

Thanks for the information about seizures. I'm sorry to hear that they have come back and are still happening. It must be a very scary experience.

Anonymous said...

thanks for sharing about joy's seizures. i can certainly relate to the roller coaster aspect of it. we're also in the middle of trying to figure out the best meds for rhema. just started a new one this weekend, and it's making her pretty sluggish. but honestly, sometimes i don't know if her behavior is the result of a seizure or the med!

JoyMama said...

niksmom - it is SO hard to know what is meds and what is symptom... sounds like Nik is on a much better track recently though.

Mama Mara - "big blue lippers" - good term - glad your guy's not having those now! As for VNS, I've heard of it, but it hasn't come up officially, maybe because it would be years away. I'll have to re-file it for future reference, though.

Trish - the first couple of times we see something new are mighty scary. It's amazing what you can get used to though.

rhemashope - I've been thinking about you & Rhema, and hoping that as the days go by, this latest med is more helpful and less disruptive for her!