Like many parents, every decision Kari and Kirk Olavson make about the care of their 3-year-old son has his best interests at heart.
But it’s different for them. And for Jacob.
Jacob had his first seizure when he was three days old. Since then the Anoka family has coped with the chronic uncertainty and never-ending medical treatments that come with caring for a child who often has dozens of seizures a day and at the worst, as many as 40. After trying medication after medication that sometimes provides short-term relief, the seizures always come back.
“It seems like whenever we try something new, he does really well for awhile, and then he gets used to it,” Kari said.
The couple are part of Minnesotans for Compassionate care, a group leading the charge and lobbying for the legalization of medical marijuana in Minnesota.
“Frankly, we want to try this for Jacob because we have run out of other options,” Kirk said.
This week state lawmakers have been debating the legalization of medical marijuana, which has been reported to alleviate symptoms for patients with things like cancer, HIV and AIDS along with seizures resulting from epilepsy or other diseases.
The family, including Jacob, has made multiple trips to the Legislature during the session, meeting with elected officials to advocate for legalization and sitting in on hearings.
Doctors are in the process of diagnosing Jacob with Lennox-Gastaut syndrome, a severe and hard to control form of epilepsy.
The seizures have denied his brain a chance to develop. He can’t walk or talk or eat solid foods. He can’t hold his own head up and can barely roll over.
Although he’s tall for his age – Kari just had to buy him 5T pants – developmentally, Jacob is 3 or 4 months old.
Last October Jacob had brain surgery where two-thirds of the band of fibers that connects the two hemispheres of the brain were severed to control tonic seizures.
In January, Jacob had one month seizure free. He started to giggle.
But then the seizures returned and Kari and Kirk watched as the gains he made began slipping away.
Kari said Jacob’s neurologist said he would sign a letter of support for Jacob to receive medical marijuana treatment. In states like Colorado where it is legal, support is required from two doctors.
Jacob would require treatment with oil made from the high-cannibidiol, low-THC plant.
Success in other states
The Olavsons know of several cases where children suffering from uncontrollable seizures have seen success with this type of treatment.
Most notable is Charlotte Figi, a girl from Colorado, who, after starting to take a specific strain of high-CBD, low-THC cannabis, has had her seizures drop from one every 20 minutes to one a month. Once catatonic and at the end of her life, she has regained her ability to talk, eat and play.
Charlotte’s mom, Paige Figi, was in Minnesota last week to testify in front of the House Rules Committee, which approved a medical marijuana bill that has been amended to not allow a smoked version of the plant, restricting it to oil or pill form.
“These kids probably aren’t going to live to adulthood,” Figi said. “This isn’t a gateway drug. For my daughter, it was an exit drug. It got her off all of the other pharmaceuticals.”
Figi also said 82 percent of children trying this form of medicine see a 50-100 percent reduction in seizure rates.
The nonprofit that administers the production of the marijuana is doing double-blind placebo clinical trials in South America, according to Figi.
Jacob is one of 10,000 children worldwide on a waiting list for Charlotte’s Web, the marijuana strain named after Charlotte Figi. But even if medical marijuana were legalized in Minnesota, it wouldn’t be as easy as importing the drug from Colorado.
Because of federal laws, medical marijuana cannot be taken across state lines. If legalized, it would need to be grown in Minnesota.
Gov. Mark Dayton has reservations about the legalization. .
Last week in a statement, Dayton said he needed more information about the costs of implementation and practicability, along with legal counsel on the potential liability for the state, before making a decision.
The Senate bill, passed Tuesday, was coauthored by Rep. Branden Petersen, R-Andover. It allows for medical marijuana to be taken in oil or pill form, or inhaled through a vaporizer under medical supervision.
The House version was scheduled for a vote Friday. Different from the Senate version, the House bill would require the those allowed to use medical marijuana to participate in a research study overseen by the Minnesota Department of Health.
Both bills are compromises in response to concerns from law enforcement surrounding the smoked form of the drug.
What’s best for Jacob
In the past three years, Jacob has tried 17 medications attempting to control his seizures. Right now he takes six.
“I’m tired of seeing him suffer, and (medical marijuana) has a better chance of working for his seizures than most pharmaceuticals available now,” Kirk said. “Cannabis is a natural option, it would be grown here and mixed with an oil, we would know everything that’s in it.”
Right now the family is considering trying a new drug, Felbamate, but it comes with side effects that could include liver failure and anemia.
“It’s hard to decide if that or constant seizures are worse, and we’re faced with tough choices like that every day,” Kirk said.
At home in their Anoka apartment, the walls are lined with Jacob’s baby photos. Soon they will need to make room – the couple is expecting a new baby in August and Jacob will be a big brother.
With the help of a Consumer Support Grant administered by Anoka County, the additional financial help allows Kari to stay home through the week and care for Jacob while Kirk works at a tool and die company.
Then on the weekends, they trade off and Kirk is at home with Jacob while Kari works as a hair stylist.
Still, the couple has talked about moving to Colorado. But they really don’t want to.
Their family is here. Jacob’s team of medical caregivers are close by. Four days a week he attends preschool at Sorteberg in Coon Rapids, where Anoka-Hennepin offers its early childhood special education program. Here he receives care from physical and occupational therapists.
But if medical marijuana is legalized in Minnesota, it would take away some of the angst for Kari and Kirk and it also could give Jacob one more chance.
“We can’t afford to move to Colorado, and there is no guarantee we would see results,” Kirk said. “We wouldn’t have to feel like we’re keeping Jacob’s best chance for treatment away from him; we could try the treatment with the support we need.”
Mandy Moran Froemming is at firstname.lastname@example.org