“Your insurance flagged it again, so we can’t fill it.” The pharmacist said it like she was reading off a grocery list.
My daughter Becca is seven. She has a seizure disorder. The prescription she just rejected is the one that keeps Becca from seizing in her sleep.
I’d been at the pharmacy counter four times in two weeks. Same answer, different face.
“Can you call the override line?” I said.
“We did. They need a prior authorization from her neurologist.”
“Her neurologist submitted that three weeks ago.”
The pharmacist shrugged. “It’s not in the system.”
A bad feeling settled in my stomach. Not about the insurance company. About something else.
I work ER. Twelve-hour shifts. I’m gone before Becca wakes up and back after she’s asleep. My husband Derek takes her to school, picks her up, handles her meds.
He’d told me twice that the pharmacy was backed up.
I called him from the parking lot.
“Hey, did you actually go in when you picked up Becca’s prescription last month?”
A pause. “What do you mean?”
“Did you hand them the prescription or did you use the drive-through?”
“The drive-through. Why?”
I went back inside. I asked the pharmacist to pull Becca’s full fill history.
She typed for a second. “Last fill was four months ago.”
My legs stopped working.
“Four months,” I said.
“Yes ma’am.”
I called Derek again.
“When did she last take her medication?”
“I give it to her every night.”
“What bottle?”
Silence.
“Derek. WHAT BOTTLE.”
“The old one. I’ve been refilling it with the vitamins from the cabinet so she wouldn’t be scared.”
Everything in my head went white.
“She’s been having headaches,” I said. “She told you she was having headaches.”
“Kids get headaches.”
I hung up. I was already calling Becca’s neurologist when my phone buzzed.
It was my mother-in-law, Patrice.
“Honey, Derek just called me. There’s something you don’t know about why he stopped filling it.”
What Patrice Said
I almost didn’t answer.
I was standing in the parking lot of a CVS at 11 in the morning on my one day off, running numbers in my head. Four months. One hundred and twenty-some nights. Becca sleeping in her bed, Derek putting a vitamin in her hand and watching her swallow it, and me working midnight codes in the ER thinking our daughter was covered.
I answered.
“Patrice, I need to call the neurologist.”
“I know. Just give me two minutes.”
She sounded tired. Not surprised-tired. The other kind.
“Derek’s been scared,” she said. “About the side effects. He read something online last spring, one of those groups, parents saying the medication causes developmental delays. He convinced himself it was making Becca slower in school.”
I stared at a crack in the asphalt.
“She’s in second grade,” I said. “She’s seven.”
“I know.”
“She told us she was getting headaches, Patrice.”
“I know, honey.”
“Seizure headaches are a thing. Pre-ictal headaches. I’ve explained that to him. I’ve explained it more than once.”
Patrice didn’t say anything for a second. Then: “He didn’t tell me he stopped filling it. He just told me he was worried about the medication. I didn’t know until he called me just now.”
I believed her. Patrice isn’t someone who sits on things. She’s the kind of woman who shows up with a casserole and an opinion before you’ve finished telling her what’s wrong. She’d have said something.
I told her I’d call her back.
The Neurologist’s Office
Dr. Renee Marsh has been Becca’s neurologist since Becca was four. She’s small and sharp and she talks fast, and she doesn’t sugarcoat things for parents who look like they need sugarcoating.
I got her on the phone in four minutes, which almost never happens.
I told her what I knew.
She was quiet for exactly two seconds.
“How is Becca right now? Today?”
“Home with Derek. She seemed okay this morning. She complained about a headache yesterday evening.”
“Okay. I need you to bring her in this afternoon. Can you do that?”
“Yes.”
“And I need you to go to the pharmacy and get that prescription filled today. I’ll call them directly. Don’t wait for the insurance, I’ll sort that out later. You pay out of pocket if you have to and we’ll fight the reimbursement after.”
“Okay.”
“She’s been off it four months?”
“Yes.”
Another pause. “Bring her in at two.”
I sat in my car for a minute after I hung up. My hands were on the wheel. The engine wasn’t on.
I’m an ER nurse. I’ve held children who were seizing. I’ve done it dozens of times. You learn to move fast and talk slow and not let your face do anything that makes the parents worse. You get good at it. You get maybe too good at it.
I couldn’t move.
Derek
He was home when I got there. Becca was at school, second half of the day.
He looked like he’d been waiting. He was sitting at the kitchen table with a coffee he wasn’t drinking.
I put my keys down. I didn’t yell. I work nights, I know what my body does when adrenaline has nowhere to go, and I needed to be functional at two o’clock.
“Tell me about the Facebook group,” I said.
He rubbed his face. “It wasn’t just Facebook. There were studies. Or things that looked like studies.”
“Derek.”
“I know.”
“She’s been having headaches.”
“I thought they were from school stress. She started a new year, she didnds some of the reading hard – “
“Seizure headaches present as tension headaches. I’ve told you this. It’s in her care packet from Dr. Marsh. It’s on the sheet on the fridge.”
He looked at the fridge. Like he was checking if the sheet was still there.
It was. I’d put it up two years ago with a magnet shaped like a pineapple.
“I was going to tell you,” he said. “I just didn’t know how.”
“Four months, Derek.”
“I know.”
“You watched her swallow a vitamin every night for four months.”
He put his head down. I watched the back of his neck. I’ve known this man for eleven years. I know the sounds he makes when he’s actually sorry versus when he’s sorry he got caught.
This was real. That’s the thing that made it harder, not easier.
He wasn’t malicious. He was an idiot who loved his kid so much he broke her medication protocol based on a Facebook thread, and then couldn’t figure out how to tell me, so he just. Kept going. Every night. A vitamin. A kiss on her head. Tuck the blanket.
“She has an appointment at two,” I said. “You’re coming.”
Dr. Marsh
Becca sat on the exam table in a paper gown and told Dr. Marsh about her headaches like she was describing a mildly interesting movie. She’s a talker. Always has been. She told her about the one on Tuesday that made her eyes feel “too full” and the one last week that happened during gym.
Dr. Marsh listened and nodded and did the exam and didn’t look at me or Derek once during it.
When Becca was dressed and sitting in the chair playing a game on my phone, Dr. Marsh asked us to step into the hallway.
She looked at Derek first.
“I’ve seen this before,” she said. “Not exactly this, but parents who go down a research hole and start making decisions about medications they’re not trained to manage. I understand the instinct. These drugs are real drugs with real effects and the internet is full of terrifying stories. But Becca’s seizure disorder is the kind that can present without warning. What you’re describing, the headaches, the timing, that’s consistent with breakthrough seizure activity.”
Derek’s face did something I didn’t have a word for.
“Is she okay?” he said.
“We’re going to do an EEG next week to see where we are. She may need a dosage adjustment after four months off. It’s not a simple reset.” She paused. “She didn’t seize in her sleep. That’s lucky. That’s very lucky.”
Derek nodded. His jaw was tight.
“You need to tell me,” Dr. Marsh said, “if you have concerns about her medications. That’s what I’m here for. You can call me. You can email the nurse line. There is a process for this that doesn’t involve stopping a prescribed anticonvulsant cold.”
She wasn’t cruel about it. She was just straight.
We got the new prescription filled at four o’clock. I paid two hundred and twelve dollars out of pocket. I watched the pharmacist count the pills into the bottle.
That Night
Becca took her medication after dinner. She held the pill up and looked at it and said it was the same color as the vitamins daddy had been giving her, which was not true, but I said yes, basically, and she swallowed it with apple juice.
She was asleep by eight-thirty.
I sat on the edge of her bed in the dark for a while. She breathes loud when she sleeps. Always has. Some kids you have to hold a mirror under their nose to know they’re breathing. Not Becca. You can hear her from the hallway.
I listened to her breathe.
Derek came to the doorway. I didn’t turn around.
“I’m sorry,” he said.
“I know.”
“I should have told you.”
“You should have not done it in the first place. But yes. You should have told me.”
He leaned against the doorframe. “The things I read said – “
“I know what they said. I’ve read them too. You know what I’ve also read? Her chart. Her history. The two seizures she had before we got the dosage right. I was there for both of those, Derek. You were at work for the second one.”
He was quiet.
“I need you to promise me something,” I said. “If you have a concern about her care, you tell me. You call Dr. Marsh. You do not make a unilateral decision and then cover it up with Flintstones vitamins for a third of a year.”
“I promise.”
I looked at Becca. One arm was out from under the blanket, dangling off the side of the mattress the way she always sleeps. Her hair was in the braid I’d done before dinner.
“She’s going to be okay,” Derek said.
I didn’t answer that.
I pulled her arm back under the blanket and I left the nightlight on when I left.
The EEG
The appointment was the following Thursday. Dr. Marsh’s tech put the electrodes on Becca’s head and Becca decided she looked like an alien and spent twenty minutes asking if she could keep the cap. She could not.
The results came back two days later.
There was activity. Not a full seizure pattern, but the kind of low-level noise that tells you the brain has been working harder than it should, compensating for something that wasn’t there.
Dr. Marsh called it manageable. She adjusted the dose slightly upward. She said we’d recheck in six weeks.
She also said, and I wrote this down because I wanted Derek to read it exactly: “Four more months of this and we’d be having a very different conversation.”
I taped it to the fridge. Next to the pineapple magnet. Right under the care sheet Derek had been walking past for two years.
He read it. He didn’t say anything.
Becca’s headaches stopped after eleven days back on the medication.
She told me one morning at breakfast that her head felt “like regular.” I asked her what that meant. She thought about it.
“Like nothing,” she said. “Like it’s just there.”
I made her eggs. I didn’t say anything.
She ate the whole plate and then asked if we could get a hamster, and I said we’d talk about it, and she said that means no, and I said it means we’ll talk about it.
She rolled her eyes.
She’s seven and she already does that.
—
If this hit close to home, pass it along. Someone out there needs to read it.
For more stories of unbelievably stressful situations, check out how My Best Friend Told HR She Deserved My Job. I Found Out Through a Break Room Wall., or how My Husband Said He Was Working Late Every Tuesday. He Was.. And if you’re looking for another intense parenting story, you won’t want to miss My Six-Year-Old Was Behind Those Doors and They Wouldn’t Let Me In.
