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Couple's Son Had 1,000 Seizures A Day, Then They Tried Medical Cannabis

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Marijuana is on the ballot this year in South Dakota. In fact there are two initiatives to legalize pot - for different uses.
 
One ballot measure allows both medical and recreational marijuana. The other initiative, legalizes marijuana for medical use only. That one, has support from more than 70 percent of South Dakota voters. But the state medical association and some in law enforcement oppose it.
 
At a young age, Rodger and Janice Knutsen’s son Kai started getting seizures.
 
“From age two, until high school, we dealt with seizure after seizure—sometimes 1,000 a day,” Janice says.
 
Kai was diagnosed with a rare and serious form of epilepsy that starts in childhood and persists into adulthood.
 
Once Kai was out of highschool, the Rapid City family found a medication that worked for about 5 years.
 
“Then, his seizures started up again,” Janice says.
 
By then Kai was taller and larger and his falls created injuries.
 
“He’s had broken teeth, a broken shoulder, broken elbow, head injuries, stitches,” Janice says. “I can’t even tell you how many times stitches.
 
“Just the worry about falling in front of a bus, falling down some stairs,” Rodger says.
 
For nine years Dr. Rodger Knutsen and his wife watched as their son’s condition declined. Every year, they would meet with Kai’s doctors at the University of Minnesota. They would ask about medical marijuana which is legal in Minnesota.
 
“But we could not get it because we did not have a certificate, because Kai was not a resident of Minnesota. I’ve heard people say why don’t you move? Well, that means uprooting the whole family with jobs, insurance, Kai’s programming here," Janice says. "It just didn’t seem like it would work moving to Minnesota.”
 
So they waited until the FDA approved a drug made from purified cannabidiol, or CBD—in 2017. Kai’s condition is one of three the drug is approved for. Two weeks later, Kai Knutsen started taking the medication and he’s been doing better ever since. Because of their experience, the Knutsen’s support medical marijuana for South Dakota.
 
“I just wonder a lot how many other diagnoses there are out there that people are suffering and waiting to have medication for," Janice says.
 
Ballot measure 26 would allow South Dakotans to use marijuana to treat seven medical conditions. It could include additional medical conditions added later by the state Department of Health. A patient would need a doctor’s prescription to obtain small amounts of cannabis for personal use.

The South Dakota State Medical Association is against legalizing medical marijuana.
 
“There are a lot of very strong and loud voices that are calling for the legalization of medical marijuana,” says Dr. Benjamin Aaker, president of the group.
 
However Aaker says he wants more research to prove medical marijuana is helpful.
 
“If it could be found that some drug—for instance, medical marijuana—was helpful yet not harmful, then that would be something the state medical association would be likely to support," Aaker says. "Our group found that there was more harm than benefit to expanding medical marijuana."
 
He says the FDA has already approved a few drugs that contain THC. That’s the intoxicant compound found in cannabis. Aaker says those are already options for prospective patients.
 
Other opponents point to states like Colorado. There, 92 percent of patients approved for medical marijuana use it to treat severe pain. Just three and a half percent use it to control seizures.  
 
Captain Tony Harrison is a former drug interdiction officer with the Pennington County Sheriff’s Office. He opposes medical marijuana. Specifically, he takes issue with the large number of people in other states who use cannabis to treat conditions like severe pain.
 
“And why would I want to give an entire community a narcotic that alters the way your brain develops and you’re operating a vehicle and you make decisions for such a small percentage?" Harrison says.

North Dakota legalized medical marijuana in 2016. That ballot measure approved its use for 12 medical conditions. State lawmakers have added 14 more. A patient needs a prescription from a licensed doctor.
 
There are about 3,800 patients registered overall in the North Dakota program. Compared to other states, that’s tiny. In fact, Colorado’s medical marijuana program registered more patients just in the month of August.   

Jason Wahl is the director of North Dakota’s Medical Marijuana program. He says the department can review medical records of patients.
 
“If we were doing a review of medical records, we would need to see the appropriate documentation in that medical record to support what the healthcare provider identified on that written certification.”
 
Wahl says the most common condition for medical marijuana in North Dakota is anxiety disorder, followed by chronic back pain.
 
The Knutsen family in Rapid City says they have slowly scaled back the epilepsy medications their son Kai has been on for year. Janice says they see a big change.
 
“As we reduce the other medications, and with the addition of Epidiolex, I’m getting my son back.”

The Knutsens hope other families will get that same chance in the future.

Lee Strubinger is SDPB’s Rapid City-based politics and public policy reporter. Lee is a two-time national Edward R. Murrow Award winning reporter. He holds a master’s in public affairs reporting from the University of Illinois-Springfield.
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