Wednesday, November 4, 2015

His epilepsy

It's his epilepsy. Not mine.

He's the one that seizes. Not me. 

Since he was 3 years and 4 months old, he's been seizing. But we didn't know it was a seizure disorder when it first started.

At first, I was the only one who saw it. Randy didn't see it. I thought I was going crazy. I know about Munchausen syndrome by proxy. Was I going crazy? Is this what it means to be a mom?

But then Randy saw it. He saw Nathan's eyes flit rapidly from side to side! Hooray! I'm not going crazy!

Then a close friend saw it. Woohoo! We're not going crazy! Someone else can verify!

Then more friends saw it. Because it kept happening. And nothing could stop it.

So we went to our doc. Again. He ordered tests. Hearing. Vision. Both were normal. Hooray! My kid can see and hear!

We got a referral for a pediatric occupational therapist. But only because he was struggling with fine motor skills.

We started occupational therapy. The closest pediatric OT at the time was in Poulsbo. So each Wednesday, I'd load both of the boys up, ages 3 and 6 months, and we'd drive to Poulsbo. For nearly a year, every week, we'd be in the truck. Drive for over an hour. Treatment for 50 minutes. Drive back home.

But his eyes were still flitting rapidly from side to side. I later learned the correct medical term is nystagmus. and that it mostly happens in people who are blind.

At Nathan's 4-year well-child check-up, I pushed. His eyes were still flitting, I was scared and emotional, and nobody could figure out what was wrong with my kid.

We ended up with a referral to Mary Bridge Children's Hospital in Tacoma to see a pediatric neurologist. Getting Nathan on a ferry wasn't an option because there's way too much going on.

Get in line. Buy the ticket. Make sure you arrive early. No you can't get out right now, we're getting ready to drive onto the boat. Yes, let's get out and go use the bathroom. Yes, you can play on the huge video arcade machine. The captain said it's time to get back in the truck, Nathan. We need to follow the rules, Nathan. The rule on the ferry is we need to go when the captain says it's time to go, Nathan.

And I pick him up, kicking and screaming, carrying him all the way down the stair, both of us crying, and then he fights to get out. Have you ever had to body slam a small child into his car seat? I have. It's not fun. Transitions suck.

And if we're gonna drive, we may as well stop in Tacoma instead of going all the way to Seattle. Right? Why set myself up--and set him up--to fail by getting on the ferry? Nope. Load up. We're driving.

October 2010, the pediatric neurologist at Mary Bridge, who always wore 4" heels, ordered an EEG at our office visit. I advocated for the EEG to be done at that visit, since we were a 2-1/2 hour car ride away from takes a lot for me to get him there...and I have an 18-month-old toddler.

Sure. Let's get that EEG done.

Thank you.

I'll call you with the results, she said.

We said our good byes to the pediatric neurologist, knowing I'd talk to her soon. 

We did the EEG. I kept him occupied with the iPad. They glued twenty-something electrodes to his head.

His eyes flitted one time, near the end of the test. 

"DID YOU SEE THAT?? DID YOU GET IT!?!? THAT'S WHAT'S BEEN HAPPENING!!!" I screamed to the tech. 

The tech came back in the room and said, "the doctor wants to see you again."

Shit. Are we spending the night? Where will we stay? Is she checking him in? I need to call Randy. 

We went back upstairs to her office. She gave me the news. "Nathan has seizure disorder. See on his EEG right here? Where the lines wiggle? That's a seizure." She pointed to her computer monitor. Lines. Lots and lots of lines that I couldn't understand. But I saw a huge jagged peak and a valley that, based on the time across the top, and the corresponding video she showed me, lasted 1.5 seconds.

She wrote a script. He started taking Depakote. Life started to revolve around his medication schedule.

She also covered her ass. We live in a litigious society, so it makes sense. I get it. I don't fault her.

Let me paraphrase....

"Don't let him swim by himself. Don't leave him alone in the bathtub. He could seize and drown. When he swings on that brand new custom playset you just constructed in your backyard 6 months ago, you need to make sure he's wearing a helmet and that he's buckled in. Don't let him climb the rockwall unless he's helmeted and secured in a harness. If he seizes, he will fall and break his neck. He won't die from the seizure; he'll die from the impact of the fall and he'll likely break his neck. No sleep overs at anyone's house ever because kids stay up late and get up early. Not sleeping enough will cause seizures. You need to keep him as calm as possible at all times. We know that stress causes seizures. And we want to try to minimize the seizures, of course."

Of course. Minimize the seizures. How do I give him the medication? He can't swallow pills. He's only 4.

You need to break the capsules open, then sprinkle the medication into applesauce or pudding. What does he like?

He likes ice cream.

Ok, then sprinkle the medication into his ice cream. 

Ok. Thank you. Goodbye.

Make sure you stop at the front desk and make an appointment in 3 months. We need to keep a close eye on him, she said.

Ok. Thank you. 

Wait. What? Belt him in? Helmet? Harness?

Fuck that. He needs to be a little boy. We did our homework and we have 4 inches of rubber mulch at the high spots on our swing set.

Not that I want him to fall. Not that I want him to get hurt. Not that I want him to break his neck.

But he was a little boy before he was diagnosed with epilepsy. So I'll take the reasonable risk and let him be a little boy.

Let him play.

Hug him.

Love him.

Because I know that at any minute, he could have a seizure so bad that it fries his brain to a crisp and he'll be a vegetable for the rest of his life.

And my regret would be not letting him play; not letting him be a little boy. My regret would be putting him in a bubble; protecting him from himself.

So, today, I express gratitude that he is able to play. 

1 comment:

  1. You are the best mama for that sweet boy. What a lucky kid.