Bernie mom travels to Colorado for son's medicine

BERNIE, Mo. ­-- Brandy Johnson recently packed a U-Haul and drove 22 hours with her son and father to Colorado for what she said was an "awful" and "terrible" experience. But she said she would do it again in a heartbeat.

The reason? She was able to get her son, Tres, the medicine -- cannabis oil -- he needed. And despite the struggles of getting to Colorado, there was a big silver lining.

"It worked," she said. "It was almost instantaneous."

Tres suffers from a condition named diprosopus, commonly referred to as cranial duplication.

Of only 35 cases in the world, Tres is the only one with his particular condition. Johnson said Tres has no duplication on either side of his brain. As a result, he suffers an average of almost 300 seizures a day. Sometimes he has more.

"When the barometric pressure changes, that affects him," Johnson said. "That and different lunar phases seem to make him seize more."

Because none of the prescribed medications was working for Tres, and there were no more options, Johnson decided to establish a residence in Colorado for a chance at getting him cannabis oil. But she said it's a shame she had to drive so far to do it.

Missouri Gov. Jay Nixon signed a bill in July 2014 that will permit marijuana to be grown legally in Missouri for the first time since cannabis prohibition began. That will allow cannabidiol (CBD) to be extracted from those plants and provided to patients with intractable epilepsy.

One year later, however, CBD still is not available in Missouri. Among the reasons are that the state only just approved two manufacturers of CBD oil, and CBD is not allowed from anywhere outside the state.

"It would be great if I could just go get the CBD oil and bring it back for my son," Johnson said. "But the state won't allow CBD unless it's been produced in Missouri."

Another issue stems from the fact many doctors are reluctant to authorize CBD oil as treatment. Doctors are licensed by the DEA, and many physicians don't want to risk their practices because cannabis still is listed as a Schedule I narcotic. Schedule I means there is no medicinal value.

Johnson opposes that view.

"It worked almost instantly," she said of the cannabis oil. "I had my doubts about whether or not it would work, but it did. Tres went from 300 seizures a day to having about 60 just in that first day of treatment. And he got better with each passing day."

Since Tres began the treatment, Johnson said she's noticed his cognitive functioning has improved, and he has started gaining weight.

"This works," Johnson said, as she wiped a tear from her eye. "This is what I've been looking for. This is medicine that improves his quality of life and won't put him into renal failure."

Johnson said Missouri is her home, and she doesn't want to have to go out of state to take care of her son.

"I'm hopeful that everything will eventually work here," Johnson said. "But I'm not that optimistic."

For a Missouri patient to qualify for CBD, a state application must be filled out. Upon the application's approval, a physician must sign off on the treatment. Her son's doctors in St. Louis wouldn't even discuss the possibility, Johnson said.

When she went to Colorado, it took thousands of dollars. She had to deal with a corrupt landlord, an apartment with no lights and an entire day in a vehicle just to get there.

"It was horrible," Johnson said. "I hated it. I hate having to go out there because this is my home. But I'll go through that every single time because the CBD works, and it helps my son."