Page 57 of Pot Shot
“I completely agree!” Nomi catches up with me, grabs me by the arm, and pulls me back. “This child needs much, much more than I can give him. Butpleaselisten to what his mother has to say. They need our compassion and help. Not your outrage and not your judgment. Do you understand?”
I force myself to breathe deeply in, then out. I understand a grown woman’s decision to get sleep however she can, and after seeing the damn-near miraculous effects on Mr. Gutierrez’s dyskinesia, I can accept that some treatments are worth the unknown future impacts to make the present worth living. But there’s no reason a child with severe epilepsy should be treated by a person without a medical degree, even one as knowledgeable, intelligent, and caring as Nomi.
“I’m not trying to be an asshole, I promise. I’m just really, really concerned.”
“I am, too. The others, I wanted you to see because I wanted you to learn. For Charlie, though, I want your help. But youmustremain calm.”
“Okay.” I blow out a breath. “I’ll do my best.”
She nods, and her fingers loosen around my arm. Part of me mourns the loss of the concrete, physical connection between us. Her hand holding me in place for once instead of pushing me away.
We walk up to the front door.
“Hello!” A small, harried woman answers after one knock. “Come in. I’m Deborah, Charlie’s mom. You must be Dr. D’Angelo.” She holds out her hand to shake, and I take it. Her eyes are exhausted but bright with hope, something I haven’t seen since an early stint in the pediatric ER. It pinches my heart.
“Nice to meet you, Deborah.”
She leads us to the living room where a skinny, long-limbed boy with a flop of brown, unruly hair sits playing video games. If Nomi hadn’t told me, I wouldn’t have known he suffers from epilepsy. He glances up with a big, goofy smile. “Nomi!”
“Hey, my man!” Nomi hands Deborah a package of glass vials filled with liquid. “Deb, please fill Dr. D’Angelo in whileIbeat Charlie atRacing Raptors.”
“Aww, you wish!” Charlie says, then scoots over to make room for her.
I clear my throat, not realizing Nomi would be leaving me alone for this part. Her eyes find me, as if to sayI’m choosing to trust you, and this feels like therealtest.
Deborah and I sit at the scratched-up table. “So,” I wrack my brain for the best way to start.How long have you been dosing your child with marijuana?is not it. Thinking back to our visit with Mr. Gutierrez, I remember how open Nomi was—how gentle. How did she begin that conversation?
I smile softly. “Tell me about Charlie.”
Deborah, like most mothers I’ve met, lights up when she talks about her child. It’s just the two of them, his father cutting out when Charlie started experiencing seizures as a baby.
“Some relationships can’t pass the stress test,” Deborah explains wistfully. “That was me and Charlie’s dad. He still calls, sometimes.”
I want to punch Charlie’s dad. Hard.
She tells me about the long, difficult years in rural Kansas—trying to find care for Charlie, fighting for the state’s insurance for children living in poverty, then fighting it to cover the neurology care Charlie needed. “When I finally found a neurologist that would accept our insurance, she was wonderful—fought so hard for us. Listened when others wouldn’t, and stood by us as Charlie’s seizures broke through each of the standard medications we tried.” Deborah swallows. “It was her idea to try the Epidiolex, the purified prescription CBD oil for seizures? I didn’t approve at first. Charlie’s dad smoked pot and look howheturned out.” Deborah releases a sad huff. “But the doctor told us how it was a godsend for her other patients with treatment-resistant epilepsy, and the seizures had gotten so bad, I was struggling to keep Charlie in school.”
She glances over to where Nomi and Charlie sit, laughing as their characters ride the backs of raptors across a racetrack, dodging falling comets and meteorites. “He’s really smart, my Charlie. Most children with epilepsy as severe as his have significant developmental delays, and while he has his difficulties, he thrives in school, when he can go. But his seizures were uncontrolled, and the school was scared. I was, too. Legally they had to take him, but how could I send him knowing he was suffering all day long? That’s when I agreed to try the Epidiolex, and it was like night and day. Charlie’s seizures became milder, then with regular dosing, stopped for days, weeks at a time. It was a miracle.”
I blink. “Why’d you stop?”
“The free samples his neurologist gave us ran out, and Charlie’s form of epilepsy is not an approved condition for Epidiolex—he’d need to be diagnosed with Dravet or Lennox-Gastaut syndromes to qualify. The state insurance refused to cover it, no matter how many appeals we filed, and I had to watch as Charlie’s seizures came back and worsened. I couldn’t afford to pay out of pocket, though I bankrupted myself trying.”
Deborah looks at her hands, and the shame coloring her cheeks twists my stomach.
“That’s when we moved to New Jersey and met Nomi, our angel. It’s hard finding a CBD oil that works the way Charlie needs it to, and while nothing’s as good as Epidiolex, Nomi’s gotten us pretty damn close.”
“That’s amazing,” I murmur, watching them laugh as Charlie beats Nomi, again. I turn my gaze back to Deborah, trying to keep my voice steady and devoid of judgment, mentally rehearsing before I let the words leave my mouth. “Have you found appropriate medical care for Charlie here? With his condition, a pediatric neurologist would be… a wonderful addition to his team.”
Deborah smiles as though I didn’t just utter the obvious. “We’re on a waitlist for the only practice that accepts the state insurance for childrenin this area, though we’ll still have the same issues with getting Epidiolex covered for Charlie. His condition simply isn’t eligible for it, even though it’s the only medication that works for his seizures. Our immediate problem is with his school, though.”
“How so?”
“Legally, they’re only allowed to give Charlie officially prescribed medications during the school day. Over-the-counter CBD oil doesn’t count, and Charlie needs to take his second dose at lunch. Without it, his seizures become uncontrollable again. For a while, we got around it by me visiting him every day, but the school caught on.” Deborah breathes deeply. “They love Charlie, but they have to follow the law.”
“And a doctor can’t legally prescribe medical marijuana…” My voice trails off as I fully understand Deborah’s terrible predicament. “They can only recommend it unless they can meet the stringent special prescription requirements due to its federal designation.”
“You see where we’re at. We can’t afford the legal medication that Charlie needs, and we’re not allowed to take the medication we can at school. Charlieneedsto be in school, Dr. D’Angelo. He gets depressed without it, so isolated at home with just his nervous wreck of a mother. But how can I let him go when his seizures are so dangerous?”
