Today was not a good day. Awesome had a grand mal (literally "big bad") seizure early this afternoon. The first one in more than five weeks. We had hoped to make it to her next neurology appointment at the end of June without another seizure.
But we didn't.
Perhaps the seizure happened because I had gotten complacent this week--I didn't feed Awesome a second supper right before bed last night (she said she wasn't hungry and I didn't insist) and then this morning I let her eat what she wanted for breakfast--a bagel and cream cheese. By the logic of our own trying-to-figure-this-epilepsy-thing-out, I let her blood sugar get too low overnight and then, sadly, I made matters worse by letting her eat a food--the bagel-- that was even higher on the glycemic index than white bread (the epitome of badness). And let's not even mention that high fat spread (the cream cheese), because we've also observed that for Awesome (unlike most kids with epilepsy) high fat foods are like pushing the "let's have a seizure now" button. And so my series of complacent stupidities, by our own reckoning, added up to a very, very bad thing for Awesome. What was I thinking?
Or maybe, to put a kinder-to-self spin on the situation,what really happened is that I had grown to believe that we had more margin than we actually did. Margin? Yes, you know what margin is--it's that space that separates you from life on the edge and life further back from the edge. It's that space between you and the edge that makes all the difference in the world when you make a mistake or don't live up to being perfectly conscientious all the time. Margin is, when you screw up, the difference between still being safe or actually falling off the edge.
And then again, because really and truly, it's hard to know at any one point in time anything with certainty about how close to the edge someone with epilepsy is standing--and why (seizures aren't like diabetes where one can test and quantify risk in real time and then apply the appropriate safeguard to increase margin again), maybe my complacency with Awesome's food today had nothing whatsoever to do with her having a seizure. It's not like she's on an official treatment diet. She's not on the Ketogenic Diet or even the Modified Atkins or any official diet (except of our own constantly revising making). Perhaps her seizure today was a random occurrence. Maybe ALL her seizures are random occurrences. It's possible.
It's true that we think we've found patterns and so we've made adjustments, established routines. But who's to say that we're not reading more into it all than is really there? Looking for patterns in the chaos may have more to do with what we want to be true than what is actually true.
But then again, isn't that what humans--and especially humans who think--do? We look for patterns. We try to establish cause and effect relationships. We try to control the randomness that is life on this earth. As individuals. As a species. As those who believe that observation can net knowledge and that, with that knowledge, we might come to have some control over our lives.
And so today I fell down--and then because there was no margin--or else, just because....Awesome fell off the cliff.
I heard her yell, "Mommy!!" She's a spirited child and often yells,"Mommy" out of her enthusiasm or impatience or whatever. And so, the first time she yelled, I answered her, "What's up, Awesome?"
A few seconds later, her yell was different--it was urgent and panicked and frightened, "Mommy! Mommy!!!" I dropped everything and ran to her.
I first thought she was in the bathroom--the door was locked--and she was yelling again. I was truly panicked--how would I get the door open if she couldn't unlock it?! Visions of locating an ax and calling 911 raced through my head. And then--thankfully!--I realized she was in the next room, not in the bathroom. There she was, sitting on a chair in front of her brother's computer, with her head turned sharply to the right and her already convulsing right arm up in the air. She was fully conscious and frightened. Her two brothers--18 and 21 years old--had also come running. They were with her; she was not alone--and so I ran to the kitchen cabinet where we keep Awesome's emergency medications.
Awesome's big seizures don't end on their own. Therefore every big seizure is a medical emergency that must be ended with rescue medications. The sooner the rescue medications are administered the better. The longer a seizure goes on, the harder it is to stop. Klonopin--the little guns--is our first choice if Awesome is still conscious; it takes a full 15 minutes to work (though, frankly, it rarely ends her seizures--it's better with auras--so I consider it little better than almost useless). Diastat--the big guns--we use first only if Awesome's seizure is generalizing quickly and is clearly beyond what Klonopin can help; it takes a full 10 minutes to work. Because of the time it takes these rescue drugs to work, every big seizure of hers is, at the barest minimum, 10-12 minutes long (Diastat working time plus whatever time it takes to get Diastat into her). And onto that we can add whatever time we've wasted messing around with Klonopin.
Things were quickly becoming more serious. One of Awesome's brothers carried her to the couch and placed her on her side. She was now beyond her simple partial seizure and into the thick of the altered consciousness of a complex partial seizure. We knew from experience that she was heading quickly for a full tonic-clonic (the convulsive type seizure most people think of when they think of seizures). Given that we could count on another 10 minutes of seizure after Diastat was given, we hastily agreed that we were in already in Diastat territory. Awesome had been seizing for maybe 5-8 minutes now. We noted the time that Diastat was given so we would know when to call 911 if it took more than 12-15 minutes to work. And we knew at this point--given what we were seeing-- that it would certainly, as it almost always does, take the whole 10 minutes to work.
And so, the time of watching,worrying and waiting began. We comforted and monitored. I watched her heart rate on her Fit Bit. We worried over the slight gray color in her face and looked it up on the internet (we read that it is caused by lower oxygen levels because of the constriction of her chest muscles during seizures). We tried not to worry. But we did. We noted the pinkness of her lips and her regular breathing as an encouraging sign. Awesome managed semi-consciousness at one point and her eyes smiled at me. The grunts directed in my direction conveyed love and a sense of well-being. That was of some comfort. We worried over her eyes that blinked in rhythm. And the shaking of her shoulder. We were happy that the tonic-clonic portion of her seizure subsided quickly (without Diastat the tonic-clonic would have continued and worsened), but worried that the complex partial's altered consciousness continued. Shouldn't she be closing her eyes soon and falling asleep--our signal that the seizure was over?
And then when she did close her eyes about 15-20 minutes after the seizure began, I became seriously concerned as her heart rate fell rapidly from 115 down to 85 before bouncing back up to 105 where it stayed for the remainder of the time she slept (I checked it constantly). I put my finger under her nose so that I could feel her breath coming steadily. And then she began to shiver--and so her 18 year old brother went to get a blanket to cover her. It was a long 20 minutes that she slept while we worried over her every symptom. Her 18 year old brother and I stayed by her side, stroking and comforting her. Her 21 year old brother sat quietly praying for her.
And then she began to wake up--mainly because I began to bother her to make sure she was really OK. She was heavily drugged and thick with the exhaustion that follows a seizure. Saliva dripped from her mouth and made her hair wet; the hair stuck to her face. I put her head in my lap and soon my lap was wet too.
And then she was conscious enough to began to ask questions--what happened? A seizure. And then we noticed an unhappy postictal first--short term memory issues. The question--what happened?--was repeated and answered at least 5 more times. The crying, screaming, and mourning that she had had a seizure began then and went on for about an hour. This is yet another reason that I hate Klonopin--for its effect on her. Irrationality. Anger. Hyper-emotionality. Obsession with one idea. Today it was the fact that she wanted to play with her best friend and couldn't because of the seizure (she couldn't seem to process my reassurances that the seizure wouldn't keep them from playing later in the day). Finally I texted her friend's mom to try to stop the screaming and crying. As hard as today was, it was a good day with Klonopin. Some days Klonopin makes her aggressive. Some days Klonopin causes her to literally growl and snarl at us--we the ones she loves most in the whole world--like a dog. Some days Klonopin causes her to shake her fist angrily at us. But not today. Today she was stuck on the emotion of sadness and in obsessing over her perceived loss.
Sometimes the post ictal period after her seizure robs her of her ability to speak and of her ability to read and spell. But not today. Today, mercifully, she retained her expressive and receptive language abilities.
After awhile she asked to relocate to her bed full of stuffed animals and to watch a cartoon on Netflix. And so she did. She walked there herself with some supervision to make sure she was steady on her feet. Sometimes during her post-ictal periods (post means after; ictal means seizure--its the time right after a seizure when the brain & body are recovering) just the mention of the possibility of her watching a movie or TV program fills her with rage at us for trying to distract her (Klonopin again). But not today. Today, she cozily curled up with her stuffed animals, her blanket, her brother, and me, her mama, on the bed and happily watched cartoons. Thank God for the many little mercies we saw today. We needed them.
Sometimes if her seizure generalizes too quickly and we're too slow with Diastat treatment, she vomits during her seizure. Because of her history--one time during a seizure she aspirated and then afterwards developed aspiration pneumonia (temporarily losing half a lung to a necrotizing--flesh eating--bacteria as a result)--this is scary And so, we treat with rescue meds as early as possible in her seizure. The goal is to end the seizure before it spreads to the part of the brain that causes her to vomit. Most of the time we are quick enough to succeed in avoiding the vomiting during her seizure. More often--and very often in fact--she vomits an hour or two after her seizure is over (not as dangerous because she is conscious then). But today---another mercy--she didn't vomit. In fact, as soon as she had settled down on the bed with her brother and stuffed animals, and as soon as I was sure that she wasn't nauseated, I made her a blueberry almond chocolate smoothie which she happily sipped as she watched cartoons.
And then an hour and half after her seizure had ended, she was back to normal.
But the day would not go back to normal for any of us. We all found ourselves wondering---Why? Why did this seizure happen today?.
And, of course, that why question usually leads to even more difficult why questions.
In fact the rest of the day and far into the night has been dominated in our minds by the why questions.
Most of these questions are questions for which medical science, as of yet, still has no answers.
And yet life goes on.
Life is funny that way. We grow up thinking that we live in a time when things are known and understood.
And yet so much isn't known.
So much isn't understood.
Medical science in regard to seizures and epilepsy is still in the age of snake oil and leeches. The more one reads about the current state of knowledge about epilepsy, the more one really does realize that there are no answers. Not yet.
We all--and especially our children with epilepsy--deserve better. But right now there is no better
Right now there are no answers, only questions.
It is as if we are stumbling in the darkness. And as the monster that is epilepsy attacks, we can do little but hold tightly to our beloved children.
There in the darkness, we wonder about margins, worry about the cliff, and--because we are hopeful for the future, that answers will eventually be found by medical science--we wait with hope for the light that will bring answers to all our questions.
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