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'Marijuana refugees' seek help for sick daughter

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Posted at 3:50 PM, Apr 06, 2015
and last updated 2015-04-06 17:00:41-04

In a sixth-floor room at Children's Hospital Colorado, Kristy Frederick gives her daughter a dose of cannabis oil. Then she climbs gingerly into her child's bed.

She lifts her daughter onto her lap and, careful not to tangle the IV tubes, begins to style the girl's hair into two pigtails.

Michaela, 3, is partially blind. She cannot walk or talk or even hold up her head. On this morning, she whimpers until her mother abandons the hairbrush. With her hair still askew, Michaela ends up in her favorite spot in the world, nestled against her mother's shoulder.

"You want me to hold you?" Kristy says softly. "It's OK. I got you. We'll do your hair a little later."

If love alone could cure a child, Michaela Frederick would no doubt be a typical, healthy girl. But, deprived of oxygen at birth, she sustained brain damage that resulted in crippling epilepsy.

Doctors tried everything they could think of to stop the seizures that plagued the child as many as 100 times a day, but nothing worked. And then last year, the Fredericks moved from Illinois to Colorado to try a cannabis oil that some said was a miracle cure.

Three drops of the fragrant green oil three times a day, and suddenly, the family says, the seizures nearly disappeared.

"It was surreal," says Kristy, 38.

Not every day since has been as encouraging. Health complications landed Michaela in the hospital, and the seizures increased.

Now, after Gov. Bruce Rauner's decision to issue licenses that will soon allow medical marijuana to go on sale in Illinois, the Fredericks' story illustrates the tremendous hope that has driven parents to push for access to the drug, even in the absence of proof that marijuana is effective in decreasing seizures, or is even safe.

Adam and Kristy Frederick met in high school in the central Illinois town of Washington. After graduation, Kristy earned a computer systems degree at Illinois State University and moved to Chicago, while Adam stayed close to home and worked as a concrete finisher. They hadn't seen one another in years when they met at a bar in 2007 and immediately connected. "I knew I wanted to marry her right away," said Adam, 37.

In 2009, they wed at a botanic garden and later built a small ranch house in Washington, 10 minutes from Adam's parents' house. Kristy got pregnant, and life seemed close to perfect until, during the delivery at the hospital, the baby got stuck in the birth canal, the family said. When the doctor finally held up the 6-pound, 6-ounce girl, her skin was blue and her body was limp.

For the first few weeks, Michaela cried almost constantly. Because movement seemed to comfort her, Kristy and Adam worked in shifts, cradling her as they walked endless laps through the house.

But nothing could stop the seizures.

Most of the seizures were brief: Her body would shudder for a split second and her arms would jerk outward, as if she had been startled by a loud noise. If you looked away, it was easy to miss.

Michaela's parents, though, did not dare look away.

They watched and counted the seizures for fear that one could spiral into status epilepticus, a prolonged and life-threatening seizure that can further damage the brain. Doctors prescribed heavy medication and an ultra-high-fat, low-carb diet, which reduced the seizures to about 50 a day but left Michaela so lethargic that she sometimes slept for nearly 24 hours.

At 2, she could not roll over or sit up. Doctors tried seven medications and eventually told the family that the chance of finding an effective treatment was  slim.

Kristy quit her job as an applications engineer to dedicate her days to Michaela. At night, Adam slept in a lounger with Michaela in his lap so he could soothe the child when she woke, sometimes as often as every hour.
Grief gave way to acceptance.

Then, in summer 2013, CNN broadcast a documentary that explored the medicinal benefits of marijuana and featured a 5-year-old Colorado girl who suffered from devastating seizures. When her parents began giving her oil made from cannabis, Charlotte Figi's seizures nearly vanished.

Adam and Kristy had no strong feelings about marijuana. If it hadn't been for Michaela, they would have been skeptical of medicinal claims. That night, though, they agreed: We need to try this.

At the time, medical marijuana was available in Colorado but not in Illinois. Because it is illegal to carry the drug across state lines, the Fredericks did not consider bringing it to Illinois for fear that, if they were caught, law enforcement might challenge their fitness as parents and take Michaela.

That left one option: Join the hundreds of so-called marijuana refugees and move to Colorado.

Across the country, legalization of medical marijuana has created a paradox.

Even as 23 states passed comprehensive laws allowing for medicinal use, the federal government considers the drug illegal.

As a result, barriers to research are very difficult to surmount. Scientists seeking to study cannabis by administering the drug to people have to secure approval from at least three federal agencies. Only four completed human studies have examined the drug's effect on seizures; each included fewer than 15 participants, and all took place more than 20 years ago.

Animal studies show cannabidiol, or CBD, a nonpsychoactive component of cannabis, can suppress seizures in rats and mice. The FDA in 2013 approved a trial of a purified CBD oil called Epidiolex for treating seizures in children, the first trial to win approval since the 1980s. Results are years away and, so far, there is no proof that cannabis, or its compounds, works in people.

Nevertheless, parents of children with intractable epilepsy, which doesn't respond to the usual medications, have successfully lobbied to have medical marijuana approved as a treatment in states around the country. On Facebook and YouTube, mothers tell stories about cannabis oil unlocking their children from catastrophic seizures.

But doctors urge caution. At Children's Hospital Colorado, epilepsy program director Dr. Susan Koh says she cannot tell families whether cannabis oil is safe. Some animal studies indicate that the active ingredient in marijuana, THC, can make seizures worse.

"We don't know the long-term effects on cognition of a child. On behavior or psychiatric mood. We don't know how it interacts with other medications and if it can cause toxicity. We don't know if it causes liver and other systemic issues in the body. There have been no studies demonstrating any of that," Koh said.

What's more, even if cannabis is effective, proper dosing is tricky. In Colorado, there is no state oversight to ensure consistency and safety.

Koh understands families' desperation and never judges their decision to try cannabis. Hospital policy allows parents to give the drug to their children who are admitted for treatment, but doctors and nurses cannot administer it, nor will they advise families on dosing.

Many parents end up taking a do-it-yourself approach, consulting with one another and adding other compounds, such as THC, which some believe helps with sleep and pain.

Against that backdrop, pressure is mounting in favor of federal legalization of medical marijuana. In March, bipartisan coalitions introduced legislation in the U.S. House and Senate to ease federal restrictions and allow research to proceed.

For now, though, Koh said the simple fact is this: "We just don't have the evidence to know whether this hurts or helps our kids."

In January 2014, the Fredericks moved to Denver. The day after they landed, the Fredericks drove to a Colorado Springs dispensary -- one of only two in the state -- that sold the oil.

Back in their two-story rental home in Denver, Adam held Michaela on his lap and Kristy placed three drops of the oil under Michaela's tongue.

"You have all this hope," Adam said. "At the same time, in the back of your mind, you think, 'What if it doesn't work?'"

Within 48 hours, the seizures, which had hammered the girl 50 times a day, were gone.

That month alone, Kristy counted 22 days that were seizure-free.

With the epilepsy seemingly under control, the family was able to push Michaela in a stroller along paths that wound into the mountains, take her to a baseball game at Coors Field in Denver and visit a nature pavilion filled with butterflies.

And they watched with awe as she seemed to change.

Michaela began turning her head and smiling when her parents walked into the room. During music therapy, she tried to sing. Then, three weeks after starting the oil, she said her first word: "Hi."

Kristy and Adam were ecstatic. They began to imagine a future when Michaela might be able to communicate.
"This is life-changing," Kristy wrote in a Facebook post at the time. "Something is happening that may lead to more."

Slowly, they reduced the pharmaceutical medications that, they felt, left Michaela in a fog. The seizures returned, sometimes as many as 10 a day, but were nowhere near as frequent or as terrifying as they had been, the family said.

Kristy enrolled Michaela in a preschool for children with disabilities and took her on play dates with other children with epilepsy who were also taking cannabis oil.

Then, in August, after seven months on the oil, Michaela starting crying and could not be consoled. At the hospital, doctors diagnosed pancreatitis, a painful and potentially life-threatening inflammation of the pancreas.

It was not clear what caused the condition, but it can be exacerbated by one of Michaela's seizure medications and the ultra-high-fat, low-carb diet. Doctors discontinued both. Complications have kept Michaela in the hospital ever since. And her family, painfully aware of the lack of research into the side effects of cannabis and concerned that it might be hurting her,  in mid-March stopped giving her the oil.

Did cannabis oil control Michaela's epilepsy?

No one can know for certain. The reduction in Michaela's seizures was never confirmed by electroencephalograms. But after Michaela's parents stopped giving her the oil, they say her seizures spiked from 10 a day to 50 a day. That increase, though heartbreaking, only confirmed their faith in the oil.

"I know the oil works," Adam says. "We're going to start it up again eventually. It's just a matter of when."

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