Fear of seizures: This time, the boogeyman laughed at me

Friday night, Max showed up at our bed in the middle of the night, as he's been doing for months now. We definitely need to do something about it, but my willpower is weak at 2:00 a.m. and Dave doesn't even wake up. What I'd like is a bouncer who can stand guard at our bedroom door and escort Max back to his room and, come to think of it, keep both kids out till 9 a.m. on weekend mornings. I'm sure I could find someone on Craigslist.

Max crashed in our bed. I woke up to the sound of him laughing in his sleep, a hearty chuckle that lasted for maybe 5 seconds.

My first thought was not, wonder what amusing thing he's dreaming about. It was, YIKES, IS HE HAVING A SEIZURE?

I thought I'd once kinda sorta read that laughing in your sleep is a sign of seizure activity.

It was 4:30 a.m. I jumped out of bed and sat down at the computer, my friend and my foe. When Max was a baby, I'd spend hours Googling info about seizures, which he was at risk for. I'd convince myself he was having them. These days, he's on good anti-seizure medication (Trileptal); he last had one less than two years ago.

I couldn't find anything relevant on Google. This was, of course, because I was being ridiculous.

I emailed our neurologist, who is always quick to respond. Sure enough, he did a few hours later, and the subject line didn't even read You Are Whacked. He wrote,

"There is such a thing as gelastic seizures, but that is not the same as laughing in your sleep. The chances of having a laughing seizure are near zero, and the chances of either being awake and happy with life or having a funny dream about cars or some other favorite topic is infinitely higher. Don't worry about it."

He is so very sane.

I am typically a drama-free person (well, depending on whether or not you ask Dave). But seizures are my boogeyman, one of the things I fear most in life. I get irrational about the possibility of them.

For the last month, before bedtime, Max and I have been watching a video of him performing at his school's holiday show. At one point, his arms and face completely tighten up then relax. Every single time I wonder: Is that a seizure? The doctor long ago reassured me that the movement is a tic exacerbated by the spasticity from the cerebral palsy. But as I watch Max and a crowd of adorable kids singing "Here Comes Suzy Snowflake," I dread the moment when it happens.

Much of my fear dates back to Max's birth. He seemed like any other healthy newborn; the next day, a doctor realized he was having seizures. I'm not sure I'll ever get past that feeling of thinking everything is OK only to get sucked into a nightmare. Things may not be fine, my mind says. Pay attention. Worry.

This time around, though, it was only a dream. And a funny one, at that. Maybe he was picturing us all purple?

I suspect I am not alone here. Got something that irrationally unnerves you when it comes to your child?

I'm having one of those roller coaster days

As I type this, my sister is in the hospital, in labor with her first baby. I am very excited, and also very anxious. I think she and her husband know I'm a little cuckoo with concern because he's been calling every few hours with updates. Like he needs to be worrying about me!

After what I went through with Max's birth, I know how horribly wrong things can go. I can't help but freak out a little. Meanwhile my mother told me that my dad, who has Parkinson's, has been muttering about how something's wrong with Judy. We think he may be confusing what happened to Max and her pregnancy, but it's still unnerving.

The other half of my anxiety: last Friday a nurse from Max's school called me at work to report a teacher had seen him staring into space for about ten seconds. The concern is absence seizures,, also known as petit mals. The teacher called his name but did not touch him, which would have been good to try to see if she could snap him out of it (if you can break the trance, it's not an absence seizure). The neurologist didn't think it was a seizure, but said to keep an eye on him, which is what I asked everyone at school to do.
Max staring into space is not a new thing; he does it, and I can always say his name and he'll snap out of it. His brain needs time to organize itself. He can also zone out when he's in noisy settings.

Yesterday, the nurse called to say she'd been observing him and he'd stared off into space for four seconds. She could not snap him out of it. I told her I wanted her to speak directly with the neurologist; often, he has a bunch of questions about what was noticed, and I thought the two of them should talk. They did today.

The neurologist and I spoke tonight and decided, once and for all, we needed to do an ambulatory EEG (they attach a monitor to Max, we go home and click a button anytime we notice any unusual behavior, go back to the hospital the next day and may have to do another day if nothing shows up). Absence seizures, he explained, most often crop up in kids between ages 4 and 8; it's related to the development stage their brains are going through then. Reassuringly, he said this type of seizure could NOT cause more brain damage. The biggest problem is that kids who suffer this lose clips of time here and there from tuning out. It's disorienting. It can interfere with learning. But, absence seizures could be quickly treatable by putting Max on a new medication (he currently gets one and a half teaspoons of Trileptal twice a day).

Words alone could not express the relief I felt when the doctor said there was no risk of brain damage. Still, the fear of seizures has me in its grips. If I had to play armchair shrink, I'd say the reason is this: I can usually act like everything's going well with Max because he basically looks OK and while he has his challenges, I can pretend they're not so bad.

With seizures, there is no denying that I have a child with brain damage.

So, I am excited for my sister's baby, I am anxious about my sister's baby. I am anxious about the seizure thing, reassured that it's not harmful, and dreading dealing with an EEG.

The roller coaster of emotions you can experience in a mere day when you have a kid with special needs is just unbelievable.

My worst nightmare: Max had a seizure

A YouTube video of a child's foot during a focal seizure.

My biggest concern for today was whether or not Sabrina was OK; she started complaining yesterday that her throat (or "froat," as she calls it) was hurting. Dave was going to bring her to the doctor.

Both kids woke up in the middle of the night, and Dave took them downstairs for a half hour or so since they were wired. Then they all came back to bed and fell asleep. At about 6:30 a.m., Max woke up, screaming, a look of terror across his face. I don't think I'll ever forget that look. Dave grabbed him. And suddenly, we were reliving that time four years ago when Max last had a seizure. "MAX! MAX! MAX!" Dave was shouting, sounding panicked. Max's entire body was rigid, his left foot was twitching, he was staring fixedly at one spot. He was not responding. I called 911. Sabrina started crying. Dave ran downstairs with Max. I followed—still on the phone with 911—carrying Sabrina, then grabbed the Diastat injection we had on hand in case of seizures.

I was about to use it when Max's body relaxed and he stopped twitching. It all lasted about two minutes. The ambulance showed up, but the two medics didn't have much to say; we knew it would be better to bring Max to the neurologist who knows his history, rather than the ER.

We asked Max if he was OK. He nodded weakly, but he was so woozy. After that, he lay in Dave's arms on the sofa, limp. Then I cuddled him and he fell asleep on me for a half hour. By 8:00 a.m., he was up and back to his usual self.

I wasn't. You know I've said before that I'm terrified of seizures, a fear that I know many of you have about your own kids. Well, it happened. The last kind was a grand mal that went on for a good 45 minutes, so at least this one was shorter. But. Still. HORRIBLE.

I had to go to work, and it pained me to not be there for Max. Dave took him to the neurologist, who said Max looked fine. He said that it was the sleep deprivation that triggered a seizure—evidently, it can override the medication. It was a focal (or partial) seizure. Our neuro upped the medication from a teaspoon of Trileptal twice a day to a teaspoon and a half twice a day; he said the only change we might see is that Max could be sluggish for three days, until his body adapts.

Max is fine now, but this has shaken me to the core. Oh, and Sabrina has strep.

I know I've griped about the kids sleeping in our bed, but I have to say, it's a good thing Dave and I were right there so we could see the seizure and act on it.

I just pray, with the increased medication, it won't happen again. The silver lining is that Friday, we take off for the Disney Cruise, so it's good this happened now instead of then. Can you imagine if Max had a seizure on the cruise? Obviously, they'd have a doctor on the ship but I keep thinking, Dr. Mickey to the rescue?!