LINCOLN — Shelley and Dominic Gillen have to rely on luck and prayer to keep their son safe.
That's about all the Bellevue couple have left to protect the slender, dark-haired child from the seizures that wrack his brain and body hundreds of times a week.
Since he began seizing at 4 months, they have tried countless medications, two special diets, a surgically implanted nerve stimulator, homeopathy and neurofeedback.
Will, now 11, continues to seize, each time risking injury or death.
Now the Gillens are looking to a new option — a marijuana extract called cannabidiol, delivered in drops of oil. The extract has shown promise in other children with uncontrolled epilepsy.
“We're under no illusions that this is a magic bullet for Will,” said Dominic Gillen. “We just feel he deserves the opportunity to try it.”
He can't try it in Nebraska, though.
Because it comes from the marijuana plant, the extract is illegal under state and federal drug laws.
So the Gillens have launched a grass-roots push to legalize the extract.
Shelley Gillen took her plea to State Sen. Sue Crawford of Bellevue at a town hall meeting last month.
She also started an online petition that has garnered more than 1,700 signatures in less than two weeks. Several are from parents, relatives and friends of other Nebraska children with seizure disorders.
“We've had a lot of desperate phone calls from a lot of families saying, 'How can we get this moving? What can we do?' ” Shelley Gillen said.
Cannabidiol, also called CBD oil or alepsia, generated excitement among epilepsy parents nationwide following reports of dramatic improvement in some children treated with it in Colorado.
The best known is Charlotte Figi, a 6-year-old who went from having seizures every 15 minutes that left her unable to talk, walk or eat on her own to being practically seizure-free with cannabidiol.
With the extract, she was able to stop taking her powerful anti-epilepsy drugs and now walks, talks, feeds herself and is able to learn.
Not all children treated with the extract have shown as much improvement. But it has reduced seizures in many.
“I thought, my gosh, we would love to try that,” Shelley Gillen said.
But the Figis live in Colorado, which allows the medical use of marijuana. That includes the cannabidiol extract of specially bred plants that are very low in THC, the compound that produces the marijuana high.
Federal law bans the consumption of all parts of the marijuana plant.
Barbara Carreno, spokeswoman for the U.S. Drug Enforcement Administration, said it would take an act of Congress or the Food and Drug Administration approving it as medicine to change the legal status of CBD oil.
The FDA has approved dronabinol, a synthetic form of THC, as a medication to prevent nausea in cancer patients and to increase appetites of AIDS patients.
Nebraska law classifies marijuana as a Schedule I drug, with no legal use. State law has a specific exception for dronabinol.
The Gillens said they are not looking to legalize medical marijuana generally, as has been done in 20 states. They said medical marijuana has not been regulated sufficiently.
But they argue that the extract is different because it would not attract abuse.
“Unfortunately, people have a preconceived idea,” Dominic Gillen said. “You're not lighting a joint and blowing smoke in his face.”
“Why can't we have a responsible program that's regulated by doctors?” Shelley Gillen said.
Dr. Michael Sedlacek, an Omaha psychiatrist and a friend of the Gillens', has the same questions.
He said there is enough good science supporting CBD oil as a safe compound and enough research on its efficacy to favor legalization, at the very least for “compassionate use.”
He noted that the oil is not psychoactive and that other, much more addictive medications currently are available by prescription.
“There's a lot of other nasty drugs out there that are managed by physicians,” Sedlacek said. “It could treat a lot of the problems they're trying to treat with medical marijuana.”
But some other health professionals are unconvinced. The Gillens said Will's epilepsy specialist is among them.
Ken Saunders, a pharmacist who is chairman of the State Board of Pharmacy but who would not speak on the board's behalf, is skeptical.
“There's really nothing in the literature that supports the use of hemp oil for patients with epilepsy,” he said, adding that anecdotal reports are not the same as controlled scientific studies.
Dr. Joseph Acierno, chief medical officer for the Nebraska Department of Health and Human Services, said he doesn't know enough about the extract to have an opinion about its effectiveness.
“We're looking into it,” he said.
The national Epilepsy Foundation, in a statement, said it supports research on CBD and other marijuana as treatment options.
However, the foundation said research on the subject is incomplete.
“While there is experimental evidence that CBD can work to stop seizures in animal models, and there are reports that it may be effective in patients with epilepsy, there is a lack of scientific data in humans,” it said.
Some answers may come from studies now getting under way.
GW Pharmaceuticals, a company based in Great Britain, is starting clinical trials in the United States of a CBD compound that it calls Epidiolex.
According to spokesman Mark Rogerson, seven pediatric epilepsy specialists so far have received FDA approval to try the product on children with epilepsy.
The trials could lead to federal approval of CBD extracts as medications. But that approval would be several years down the road.
In the meantime, the Gillens live in constant fear.
When Will seizes, he risks falling and hurting himself. He wears a helmet with a facebar on it and sleeps in a special netting-enclosed bed to lessen his chance of injury.
Even so, he has suffered multiple concussions, mouth trauma, broken teeth and bruises. He hasn't learned to talk, has to wear diapers and can't feed himself.
The Gillens don't know if his cognitive delays are the result of the constant seizures or the medications they give him in an attempt to control them.
Doctors offer Will only one more option — surgery to sever links between the two halves of his brain.
It's a drastic step and, at best, would give only partial relief from one type of Will's seizures, the Gillens said.
They would try Will on the cannabidiol oil grown in Colorado now, if it were allowed in Nebraska.
Marc Bowman, an Omaha father, is among the other parents interested in CBD oil.
His daughter started seizing when she was 6 days old. Now 10, she cannot walk, talk or sit up by herself. Until she started on a new drug regimen, she needed emergency medications to stop her seizures.
“If it's something that would benefit our daughter, I'm willing to try it,” he said.
Crawford, the Bellevue senator, began working on the issue after hearing the Gillens' story.
She said she is researching whether a change in the law is needed or whether there may be other avenues to make the extract available in Nebraska.
If no other avenue appears doable, she said, she will offer narrowly targeted legislation to legalize CBD oil. Lawmakers in Utah and other states are looking at similar legislation.
“We will not be introducing a broad medical marijuana bill,” Crawford said.
Passage of even a narrow bill would put Nebraska out of compliance with federal drug laws. However, federal authorities have taken a generally hands-off approach to states with broader medical marijuana laws.
Sen. Brad Ashford of Omaha, the Judiciary Committee chairman, said he doesn't know enough about the issue to have an opinion but would be willing to look at proposals.
“Anything that helps kids and doesn't become a street drug, and there's oversight by a physician, I'd be willing to look at it,” he said.