Ali Selva was in striped pink PJs, cuddling with her mom on the couch to watch “The Emoji Movie” for roughly the dozenth time, when police began pounding on the door of their Costa Mesa apartment.
A short time later, Ali’s dad, Joseph Selva, was in handcuffs, and a social worker was preparing to take the 7-year-old to Orangewood Children’s Home.
Ali was separated from her family for nearly a week, and found herself at the center of a custody battle that lasted another two months. Her parents say social workers accused them of “severe medical neglect” because they chose to change the medicine they give to Ali to help combat the seizures she suffers as a result of epilepsy.
A few months earlier, they had stopped using a doctor-recommended anti-seizure medication that produced harsh side effects. Instead, they gave their daughter CBD, a non-psychoactive compound found in cannabis, that was blended into an oil they bought at a nearby supermarket.
“It never crossed my mind even for a second that using CBD oil to treat my child’s seizures, and seeking alternative treatments, would lead to what happened,” said Ali’s mother, Maria Selva.
As Maria has since learned, her family is far from the first to face custody issues over CBD.
Because cannabis remains illegal at the federal level, many government workers and medical professionals don’t see CBD, or any other cannabis derivative, as a legitimate treatment option. So even in states like California, where recreational marijuana is now legal and medical marijuana has been legal for 20-plus years, families can face legal trouble — even separation — for using cannabis compounds to treat their children.
That’s why even though Ali is back home with her family her parents are continuing to fight back. They’ve filed a $1 million claim against Orange County, with plans to bring a lawsuit soon.
“My hope is that by being knowledgeable, being active and being vocal about these injustices, we can keep more families together and safe,” Maria Selva said.
Separated over CBD
Ali was 10 months old when she had her first seizure.
After that, every couple of months, her limbs and face would twitch and her tiny body would briefly go limp. Each time, the Selvas would rush their daughter to the hospital. And, each time, doctors couldn’t find anything wrong, confident she’d grow out of it.
When Ali was 3, the seizures stopped. They took it as an answer to prayer.
But in spring 2016, during a trip to the Santa Monica Pier, Ali had seizure unlike anything they’d seen to that point. Her lips turned blue and her eyes rolled back. An ambulance took the Selva’s daughter to a nearby hospital, where doctors recommended starting her on a powerful medicine called Keppra.
The first day on Keppra, Maria said, Ali’s personality changed. The typically sweet, helpful little girl was suddenly moody and aggressive. Maria was 7 months pregnant at the time with their youngest child, Liam, and Ali — who wasn’t previously violent — repeatedly hit Maria’s stomach. After being told to stop, Ali shifted her anger, repeatedly banging her head against the ceiling by jumping on her bunk bed. At one point, the little girl sprinted out of their second-story apartment and nearly fell down the stairs.
“She was a wild child,” Maria Selva said. “She wouldn’t stop.”
While Keppra can be effective at controlling seizures, it causes aggression in as many as one in five patients, according to Dr. Shaun Hussain, a pediatric neurologist at UCLA.
The Selvas told doctors about Ali’s behavior and asked for alternatives, but they were told Keppra, a pharmaceutical, was their only option. They then made the difficult choice of taking Ali off any drug while they continued their research. Soon after that they read case studies that described other children with epilepsy finding relief by using CBD oil.
The Selvas were leery. Maria said neither she nor Joseph has ever smoked anything. But they also were desperate. So they picked up a bottle of CBD oil from Mother’s Market & Kitchen in Costa Mesa and, in July 2017, they started giving Ali a couple drops each day.
That initial dose was too low and, for a couple months, Ali had a few more seizures. After Maria and Joseph did more research they upped the dosage. Soon, the seizures became less frequent and less severe, and Ali felt no apparent side effects.
They thought they were finally on the right track.
On Oct. 20, Ali hadn’t had a seizure in nearly two weeks. But when school ended that day, both Ali and her older sister, Taliyah, told their parents they’d been pulled out of class and interviewed by social workers about their life at home. A week later, on Oct. 28, police were pounding on their door.
The Selvas still aren’t sure who called child protective services, or why. They suspect the complaint came from either a neurologist, who’d insisted they keep Ali on Keppra, or a school nurse, who Joseph had told about the CBD oil.
Videos shot by Maria on the night Ali was taken from their home depict officers handcuffing Joseph before showing a warrant that said the Selva’s care of Ali posed “a threat to the child’s health or safety.”
The videos show Maria asking Ali to get her suitcase ready and saying, “Remember how you wanted to go somewhere?” A grinning Ali — whose tongue keeps going to a gap where she’d recently lost a baby tooth — responds, “Yeah, to Hawaii!”
A social worker handed Ali a teddy bear and drove her to the children’s home in Orange.
“It just felt like we were being ripped apart,” Maria Selva recalled.
“I wanted to call the police, but it was the police that were doing it.”
Taking the fight to court
Ali spent four nights away. During daily supervised visits, she repeatedly told her parents she wanted to come home.
At their second court hearing, the Selvas were granted temporary custody of their daughter provided they agreed to 16 conditions — including putting Ali back on Keppra. On Dec. 5, all conditions were dropped when the judge dismissed the case.
Orange County Social Services declined to answer any questions about Ali’s case or a parent’s rights to choose kids’ medical treatment, citing confidentiality issues.
In April, the Selvas filed a $1 million claim against Orange County. The claim alleges, among other things, that county workers falsified court records.
The Selvas are looking for an attorney to take the case to court. In the meantime, Maria continues to speak out, with their story featured in an upcoming documentary and a Facebook page that’s connecting the Selvas with other families who share similar stories.
Family separations linked to cannabis
There’s the case of Kelsey Osborne, a mom in Idaho who lost custody of her two kids in 2016 after giving her 3-year-old daughter, who was suffering from seizures, a smoothie made with marijuana butter. She was still fighting for custody as of most recent media reports more than a year ago.
Tammy Searcy is an Oklahoma mom who lost custody of her five children in 2017 after social services saw video of her giving CBD oil to her 14-year-old daughter, who lives with severe autism and epilepsy. Searcy was also still trying to get her children back when local media last reported on the case.
The Jergers in Indiana nearly had their 20-month-old daughter, Jaelah, taken away in 2017 after doctors reported them to social services for treating her severe epileptic seizures with CBD oil. They managed to keep Jaelah after a state legislator personally intervened.
Many of these cases play out in states with conservative marijuana laws. But in the 11 years Dr. Bonni Goldstein has used marijuana to treat patients in the Los Angeles area, she knows of eight families who’ve faced custody issues for medicating their children with cannabis or some variant of the drug.
Goldstein, former chief resident at Children’s Hospital Los Angeles, helped get charges against these parents dropped by serving as a witness in court. That’s one reason — along with how CBD can potentially interact with other seizure medicines — that she urges parents to find a doctor to support them rather than going it alone when it comes to choosing CBD.
Evelyn Cox, a Sacramento attorney who specializes in custody cases, agrees. She says social workers shouldn’t get a say in how a parent chooses to medicate a child as long as the substance in question is legal for that use and a doctor is part of the approval process.
Goldstein said most of the disputes between parents and social services spring from a lack of education about cannabis.
That’s beginning to change, she said. But until cannabis-based treatments gain wider mainstream acceptance, Goldstein believes legal problems will continue to pop up.
Interest in CBD skyrockets
High-profile custody battles haven’t stopped families from turning to cannabis products as a medication to help their children.
One factor in that interest is a 2013 documentary on CNN about Charlotte Figi. The Colorado girl was 5 and nearly catatonic, suffering hundreds of uncontrollable seizures a week, when her parents began giving her CBD oil. She improved dramatically, having just one seizure a week. Today, Figi’s parents say she’s living a full, healthy life.
Another reason CBD oil is gaining traction as a treatment for seizure disorder is that standard medicines are ineffective for more than a third of the population, Goldstein said. Most patients she sees have already tried several different pharmaceuticals, seeing little improvement or side effects so severe that their families are frantic for alternatives.
She tells the story of an 18-year-old with seizures and autism who was on Keppra. The teen flew into such a rage at a thrift store that onlookers called 911. He was handcuffed and hospitalized on a mandatory 72-hour hold.
Since he’s switched to using CBD oil, Goldstein said the teen hasn’t had a single seizure or aggressive outburst.
Goldstein partnered with a Seattle doctor for a 2017 study that tracked 272 epilepsy sufferers using CBD. In that group, 86 percent saw at least some reduction in seizures and a full 10 percent were declared seizure free. Side effects, she said, were rare and mild, though some patients noted fatigue and changes in appetite and sleep patterns.
Even the federal government has recognized CBD as a potential seizure medication. In June, the Food and Drug Administration approved a syrup called Epidiolex, made with purified CBD. It’s expected to hit the market this fall.
In the meantime, families continue to rely on store-bought CBD oils. That includes a strain developed specifically for Charlotte Figi, known as Charlotte’s Web.
That popular oil is what the Selvas were using — and still use — to treat Ali.
They have a new doctor who has weaned Ali off pharmaceuticals again. She’s been on CBD alone since April, and her mom says her seizures are nearly gone.
This experience has taken its toll, though, with hefty bills and lingering post traumatic stress of the night when Dad was handcuffed and Ali was taken from her family.
“It fully changed our perspective on life and the way we see the world,” Maria said.
Ali still won’t go to sleep without a nightlight. And Maria is in therapy to work through the anxiety she feels every time someone knocks on her door — and the distrust she now has for doctors, schools and law enforcement.
To get a fresh start, the Selvas recently moved to Los Angeles. They’re also now homeschooling their kids, looking to foster Ali’s passion for becoming a baker or a doctor.