Seizures cause Nic Volker to shake or stare blankly dozens of times most days, despite medication and a special diet, his mother says.
She wants the 9-year-old to try something that has helped children with seizure disorders: cannabidiol, or CBD, an ingredient in marijuana that isn’t psychoactive but is illegal in Wisconsin and most states.
“One seizure can be fatal,” said Amylynne Santiago Volker of Monona. “There really aren’t any other choices for us. I just want CBD to be an option.”
A bill introduced last month by Rep. Robb Kahl, D-Monona, would allow the use of CBD for seizures. Kahl drafted the measure at Volker’s request.
The bill, co-sponsored by Rep. Scott Krug, R-Nekoosa, was approved last week by the Assembly Committee on Children and Families. It hasn’t gone before the full Assembly and could face an uphill battle in the Senate as the end of the legislative session nears, Kahl said.
However, Sen. Leah Vukmir, R-Wauwatosa, chairwoman of the Senate health committee, is reviewing her opposition after an amendment was added last week, her staff said.
The amendment would limit the dispensing of CBD to doctors or pharmacists approved by the state. It would require federal approval of CBD’s experimental use, which the Food and Drug Administration has granted elsewhere.
The amendment led the Wisconsin Medical Society, which opposes a separate bill to legalize medical marijuana generally, to support the CBD bill.
“While this bill is related to marijuana, it is very limited in scope and has a very defined procedure before something can be dispensed,” said Mark Grapentine, a medical society lobbyist.
Several states are considering similar bills, Kahl said. CBD is available in some states.
The national Epilepsy Foundation says CBD’s potential benefits and harms remain unproven. But the group pushed for greater access to CBD last week, saying “an end to seizures should not be determined by one’s ZIP code.”
CBD has shown effectiveness in animal studies and anecdotally in people, but “what we know about it is very little,” said Dr. Rama Maganti, director of UW Health’s epilepsy program. “We don’t know what dose to use.”
Still, Maganti said he has discussed the use of CBD with patients whose seizures are not controlled by other means.
In Colorado, growers of a marijuana strain high in CBD and very low in THC, the plant’s main psychoactive component, have provided the special pot to nearly 300 patients, according to the Associated Press. For consumption, it is typically mixed with olive oil.
The patients include Charlotte Figi, 7, whose dramatic improvement after taking CBD for seizures has become a rallying cry for parents of children with seizure disorders across the country. Charlotte was featured in a documentary last year by Dr. Sanjay Gupta, CNN’s chief medical correspondent.
Volker watched the documentary “Weed” soon after her son’s seizures returned in August. They started in 2011 but had been kept at bay by medication for nearly a year.
“It was so amazing to see a girl who was a lot like Nic,” Volker said.
Nic, a second-grader at Winnequah Elementary School, has battled serious medical conditions most of his life. Doctors in Milwaukee removed his colon in 2009 and gave him a cord blood transplant in 2010 to treat rare gut and immune system disorders. The Milwaukee Journal Sentinel chronicled the ordeal in a series that won a Pulitzer Prize.
Despite all Nic has endured, Volker said she’s most worried about the return of his seizures. Soon after the seizures first started, his speech became garbled and his cognitive ability declined, requiring him to repeat first grade, she said.
“It’s scarier than all the other things he’s gone through,” she said. “The prognosis isn’t good.”
Some patients with epilepsy undergo brain surgery to remove seizure-causing tissue. That is not an option for Nic because tests showed the seizures come from several parts of his brain, Volker said.
He’s tried 10 different drugs for seizures, she said. Doctors recently increased the dose of the medication that seems to work best, and Nic started a special diet for people with epilepsy. The diet seemed to aggravate his gut issues, however, so now he’s on a modified version of it.
Meanwhile, his seizures continue — about 25 to 100 times nearly every day, mostly in the evening, his mother said.
Sally Schaeffer, of Burlington, said her daughter, Lydia, 6, also suffers from seizures that are not well controlled by medication. She wants Lydia to try CBD and testified in support of the bill, along with Volker and other parents, at a hearing Feb. 12.
Charlotte Figi’s mother and a grower of the high-CBD marijuana strain came from Colorado to speak at the hearing.
Schaeffer and Volker said they would consider moving to Colorado, at least temporarily, to get CBD for their children if Wisconsin doesn’t approve it.
Kahl said he supports medical marijuana in general but sees little chance of the current Legislature approving it.
He hadn’t heard of CBD specifically until Volker approached him. He researched the issue, watched Gupta’s documentary and found that the narrow use of a particular type of medical marijuana could get bipartisan support.
“It’s not something that was on my radar,” Kahl said. “But this seems like a common sense approach.”