News 8 Investigates: Marijuana as Medicine
SPARTA, Wis. (WKBT) — It’s been more than a year since Wisconsin legalized cannabis oil for treating seizures in children.
Governor Walker signed a law in April of 2014 allowing for the use of a marijuana derivative called cannabidiol.
However, our investigation found the law isn’t helping patients.
Records filed with the state’s Controlled Substances Board show that since the law was passed, no doctors in Wisconsin have prescribed cannabidiol or CBD to their patients for the treatment of seizures.
Why? Because an amendment added to the bill to get it passed requires physicians to first apply for and carry out an investigational drug trial with the FDA.
It’s a lengthy, rigorous and expensive process that many doctors just aren’t willing to do.
And it’s something the Falk family of Sparta wasn’t willing to wait for.
6-year-old Danny Falk and his twin sister Olivia have a special kind of bond.
“She watches over Daniel like a hawk. She’s very protective of him,” said their mom Kim.
It’s a bond, that’s in part, born out of a tough entrance into this world. They came at just 24 weeks.
“Just at any point, you don’t know if you’re going to bring your babies home.”
Daniel and Olivia each weighed in at a little more than a pound and suffered many complications in their first few months of life.
Kim said, “It was a roller coaster, but we made it through.”
But the roller coaster ride wasn’t over just yet for the Falks. In fact, it was really just beginning.
“Danny had his first seizure that we know of for sure when he was one year old. All of the sudden started jerking, his lips started turning blue, his face started losing color.”
“It was pretty terrifying. You don’t know what’s going on,” said Kim.
It was a few months later before they got the official diagnosis. Danny had epilepsy. His seizures typically included a blank stare and his eyes rolling back in his head.
“Sometimes he’d just have one a day, two a day, sometimes he’d go a couple of days without them, most recently he had up to 24 a day.”
When Danny turned 4-years-old, he started to regress in nearly every aspect of his life. And by the time he was 5-and-a-half, it was to the point where he couldn’t do anything by himself anymore.
“He would lay on the floor and not interact with us at all. He had no interest in toys. He was completely blank, his face was. Wouldn’t smile,” said Kim.
It got so bad he lost the ability to swallow and chew. Doctors had to put a tube in his stomach to feed him.
“He had no quality of life, it’s awful to watch your kid, just regress so much.”
“In kids with epilepsy, about 20% of those children will have seizures that are not easily controlled with medication and unfortunately Danny falls in that group,” said Dr. Elaine Wirrell, Danny’s neurologist at Mayo Clinic in Rochester.
Kim says they tried medication after medication, special diets, and chiropractic care, but they were watching their son slowly slip away.
Kim said, “You just feel completely helpless, you just want to help your kid. It’s just an awful feeling and you want to have so much hope for your child, but at one point, you’re almost losing hope and it’s an awful feeling.”
Running out of options, Kim started researching medical marijuana. “All I’ve ever been told is marijuana is bad, I never heard anything good about it. It’s something that I knew we needed to try.”
After many conversations and support from Danny’s pediatrician in Onalaska and his neurologist at Mayo Clinic in Rochester, Kim, her mother, and Danny packed up the mini-van and headed to the one place where medical marijuana was easily accessible; Colorado.
“Not everything was completely planned out before we went, but we just kind of had to jump and hope and pray that everything would be OK when we got there. It was kind of a last chance, we’ve got to do something for our son, I can’t do this any more, watch him not enjoy life at all.”
The decision to move to Colorado wasn’t an easy one. Kim’s husband Nick and Danny’s twin sister Olivia stayed behind in Sparta. And there was no promise the medical cannabis was even going to help Danny’s condition.
“We were praying that he’d be like the other people you hear about that they take one dose and they don’t have seizures that day, but that’s not what Danny was,” said Kim.
The first few months in Colorado were rough. Danny’s seizures actually got more frequent with the medical cannabis. But doctors told them to wait it out before they gave up.
“We stuck with it, it was awful, but all of the sudden he started sitting up, his seizures got worse, but he started sitting up again on his own. Then all of the sudden, he only had 10 seizures one day, then 7, eventually he had a couple a day and then all of the sudden he didn’t have any more.”
“I was a bit surprised to see how well he responded, pleasantly surprised. I’ve certainly had kids in my practice who’ve also tried medical marijuana with no where near the benefits, some it hasn’t helped at all. Marijuana is a drug just like the other ones we use so I think clearly it has some benefits, but it needs more careful studies,” said Dr. Wirrell.
After 3 months in Colorado, Kim knew they couldn’t stay. It was just too hard being apart from the rest of their family. But as it turns out, Minnesota had just passed a medical cannabis law of its own.
“We started seriously looking at Minnesota and decided that if we can’t stay in Wisconsin with his medication, we had to move to MN,” said Kim.
Since June, the Falk’s have been living in Rochester, together again as a family. Danny now gets his medical cannabis from one of only three dispensaries in the state of Minnesota, one being in Rochester. He’s given the medicine at home 3 times a day.
Kim said, “it’s an oil actually. We draw it up in a syringe and it goes through his tube in his stomach. What Daniel has, there’s very little THC in it which is the part that gets the person high so he’s not getting high off it, it’s just helping his brain relax.”
Danny is still on an uphill climb, but he’s making progress almost every day. “It’s amazingly different. Really, I had a child that laid on the floor and did nothing at one point to the point where he’s smiling and loving his dog again.”
“I’m not completely unrealistic, Danny’s seizures will affect him forever, he is not cured, but he actually has quality of life.”
Two years ago, Kim was among those with a negative perception of marijuana. Now, she considers herself an advocate and hopes others get educated too.
“I’m going to do what I can to get the word out there that marijuana and the cannabis plant is not the evil thing we’ve all been taught it is, there are huge benefits to it.”
Kim hopes Wisconsin can pass a workable law sometime soon. She says they almost feel like they’re held hostage because they can’t leave the state of Minnesota with Danny’s medication for fear of being federally prosecuted.
And it’s important to note, that it’s not even known Wisconsin’s law would benefit Danny. It doesn’t allow for any THC, which Danny’s medication in Minnesota does.
Both Gundersen and Mayo Clinic Health Systems released statements on the use of medical marijuana:
“Decisions regarding medical treatment and the prescribing of pharmaceuticals are confidential and will remain between patient and provider. Pharmacies within the health system reserve the right to stock certain pharmaceuticals on a case by case basis and within the confines of state and federal laws.” -Gundersen Health System“Participation in the Minnesota and Wisconsin Medical Cannabis program is voluntary for health-care providers. Mayo Clinic has developed a policy and associated procedures to guide providers who choose to participate in the program. Patients with questions about the program should visit the Minnesota or Wisconsin Department of Health Medical Cannabis website or talk to their healthcare provider.” -Mayo Clinic Health System