Five days left: Seizures, sleeplessness as Utah families await cannabis oil bill
In November, Emilie Campbell received a call about her 6-year-old son, Connor, who had catapulted himself over a security gate at school and broken his arm.
Campbell was already at Primary Children's Hospital consoling a friend the mother of a child who, like Connor, has untreatable epilepsy and wasn't coming out of a seizure. By the time Campbell and Connor returned to Primary, three more kids were being treated for epilepsy-related emergencies.
"This kind of thing happens all the time," Campbell said.
Connor's seizures have since increased. He isn't going to school and her husband, Neon Trees bassist Branden Campbell, is about to leave on tour with the Mormon alternative rock band from Provo.
Seizures and sleepless nights. Accidents and chance meetings at the hospital. Another therapy, eventually more harmful and less helpful than the last.
This is how Utah families coping with intractable epilepsy keep time.
Here's another: five days.
Utah's Legislature has less than a week to ponder and pass a record number of bills, including a hard-fought measure that would give families trial access to a nonintoxicating cannabis oil shown to quell seizures in some children who have exhausted all other remedies.
HB105 passed the House and on Thursday skated through the Senate Health and Human Services committee, a good sign it will be warmly received by the Senate.
Still waiting • Getting this far required compromise. Only those with intractable epilepsy and written permission from a board-certified neurologist could apply to the Utah Department of Health for permission to import cannabis oil under HB105.
The oil would have to be certified to contain at least 15 percent cannabidiol (CBD), the chemical believed to have anti-seizure properties, and less than 0.3 percent of tetrahydrocannabinol, or THC, the psychoactive chemical that gives marijuana users a high.
And the bill was amended to expire in two years, allowing lawmakers to test its results.
The Utah Medical Association, a powerful doctor lobby, has since joined neurologists in endorsing HB105.
Still, drug prevention advocates, mostly from Utah County, continue to mount an offense, arguing cannabis oils are unproven and unsafe and that families should wait for federal approval of pharmaceutical-grade cannabis.
That frustrates Pleasant Grove mother Jennifer May, who started Hope 4 Children With Epilepsy last fall. More than 50 families have joined the cause.
"I just get so SICK of the false impression that the drugs currently prescribed for our children with severe epilepsy are safe and effective. They are neither! Nor are they all [Food and Drug Administration]-approved. So why must this treatment be?" she vented in a Facebook post on Feb. 25.
"Why can't I, as a parent who cares for my 11-year-old child 24/7, sit down with his pediatric neurologist and make an informed decision about his care?"
Refusing to wait • Some families have lost patience and moved to Colorado, for now their only means to legally obtain cannabis treatment.
"We need to try this and rule it out before taking the next step, brain surgery," said Mandi Cromar.
The Cromars Mandi's husband, David, and three of their four children sold their Farmington home, and headed for Colorado Springs just after Christmas. Cromar's 14-year-old stepson remains in Utah with his mother.
"I've had to just turn off emotions. I can't cry, because if I do, I can't stop," Cromar said.
Holden, 6, started having seizures at age 2. His developmental delays are mild; he's a year behind in school and Cromar hopes he'll live a "normal" life.
But every day he loses cognitive ground, she said. "At age four or five he knew his colors and numbers and now he struggles with that."
On the drive to Colorado, after coming out a seizure, Holden looked at his mom without recognition and made a grab for the car door handle, asking, "Can I go now?"
He is on a waiting list for a CBD oil made by the Realm of Caring Foundation in Colorado Springs that has been shown in observational studies to reduce seizures in some children by 50 to 90 percent.
As of early February there were more than 2,000 children on that list, all of whom were told to expect their CBD oil by at least October.
While they wait the Cromars decided to try another oil made by Realm, higher in THC, that has worked for some families.
They're still working up to their maximum dose, keeping Holden on his other seizure-control medicines. But they've seen significant improvement.
"He's been on it for three weeks and we've seen his seizure clusters go from three or more a day to one or two. And instead of 75 seizures in a cluster he's having 20," Cromar said.
'There's nothing else left' • Campbell's son, Connor, is more impaired.
In the days following surgery for his broken arm, the 6-year-old "was like a caged animal," said Campbell.
He ran up and down the stairs and jumped on and off the dryer. In anger, he bit his mother and scratched at his bandages, which had to be replaced. His seizures have increased.
"I don't know if it's the pain meds or the trauma. I can't send him to school so he's home all day, and my husband leaves this week on tour," said Campbell, days after the accident.
Campbell's husband is Branden Campbell, the bassist for the Neon Trees, the multiple-platinum, Mormon alternative rock band from Provo.
Many of the commonly prescribed drugs for epilepsy are psychoactive and addictive. Some can cause blindness, organ failure and brittle bones.
Connor's broken arm, however, was a freak accident; he's not taking any drugs, because none have worked, said Campbell. In fact, they made Connor's seizures worse.
Most recently the Campbells flew to the Cleveland Clinic in Ohio to see if Connor was a candidate for brain surgery.
"If they can find exactly where seizures come from, they can scoop out part of the brain, separate the two hemispheres or implant a nerve stimulator," she said. "But his seizures are so generalized and widespread, that they can't find a point of originâ¦ They say his brain looks like an electrical storm 24 hours a day."
Because Connor is drug-free, the effects of the cannabis oil may be more immediate and pronounced, said Campbell.
Connor can't talk and exhibits autistic behaviors. But he has a sense of humor, is sometimes bashful and likes to play chase with his older sister, Katie.
"We see those little moments of his personality," said Campbell. "Those are the kinds of things we might see more of if we could get control of his seizures. It's not true that he's in his own world, separate and unreachable."
She realizes cannabis may prove to be another disappointment.
"It could make things worse. We don't know," she said. "But there's nothing else left."
By the numbers
About 100,000 Utahns have epilepsy, nearly 33,000 of whom have refractory seizures that are difficult to control, according to the Epilespy Association of Utah. Of those, about 10,000 are children.