Pubdate: Sun, 07 Dec 2014
Source: Denver Post (CO)
Copyright: 2014 The Denver Post Corp
Author: John Ingold

Part one of three


Hundreds of Families Have Moved to Colorado in Hopes of Healing Their 
Sick Children - Kids Conventional Medicine Has Failed. They'Re 
Turning to a Liquid Form of Marijuana That Has Helped Some, but Not 
All. This Is the Story of 12-Year-Old Preston and His Mother, Ana.

Ana Watson looks across the living room of the Colorado Springs house 
that still doesn't feel quite like home and sees her son, Preston, 
sitting stiffly on a brand-new couch. His eyelids flutter, struggling 
against the seizures that have quaked through his brain every day 
since he was 3 months old.

"We have a special squirt-squirt we need to do, OK?" Ana tells 
Preston, adopting a smile as she walks toward him. "You need to be a big boy."

July 12 Ana Watson measures 0.5mg per pound of body weight for 
Preston's first dose of "Haleigh's Hope," a high-CBD oil she has been 
pinning her hopes on to help control his seizures and change his life.

In her hand, Ana holds the first dose of what she hopes will finally 
stop the seizures. More than a dozen medicines have already failed, 
and continuing down the certain path of conventional treatments 
promises only more misery and maybe even death for Preston. So Ana 
has chosen uncertainty in the form of this amber oil created in a 
Boulder County garage.

Just to get to this moment in July, she had to uproot her family and 
move across the country from North Carolina to Colorado, one of the 
few places where the new and unregulated treatment is at least 
somewhat legal. She's committing a federal crime just for trying.

"Open up," Ana coos.

Instead, Preston turns his head side to side to avoid the dropper. 
Squirming on the couch next to his mother, he's nearly as tall as she 
is. But hundreds of seizures a day have restrained his development to 
that of a 2-year-old. He is 12 years old, yet in many ways he's a 
70-pound toddler.

Ana grabs his arm, but he pushes her back. She tackles him and 
squirts the oil into his mouth, but he coughs it back up. She reaches 
for her cellphone.

July 12 Ana watches Preston fight off his first dose of CBD oil, 
being administered by a family friend who was visiting from North 
Carolina. The dose went into Preston"s mouth, but he immediately spit it out.

"Help," Ana writes in a Facebook message to the community of parents 
who have tried the same treatment. "He is spitting it out and 
gagging. Can I mix it with food, give rectal? Any suggestions?????"

Ana's mom, Milly, stirs more medicine into ice cream and brings it 
over. But Preston won't eat.

Ana tries to bribe him with his favorite YouTube videos - "I'll press 
play if you take a bite." He still refuses.

She promises him that his little sister, Sydney, will dance if he 
takes his medicine. "I'm not doing it," Sydney says.

Ana's shoulders slump, and Milly tells her to back off.

"You're overdoing it," Milly admonishes. "Skipping it is not going to 
hurt him."

But Ana's jaw clenches.

"Why did we even come down here if he's not going to take it!?" she snaps.

"We can't force him to take it!" Milly shouts.

"He needs to learn to take it!" Ana says.

Milly walks out of the room, saying they should try later.

"Stop arguing with me!" Ana finally says. "Damn."

She turns toward Preston, and, as if he senses the tension, the 
cringe on his face pivots into an awkward smile. He starts to laugh, 
and she does, too.

"Silly mommy," he says quietly.

Ana eventually calls a friend, who suggests giving the medicine in 
emptied pill capsules delivered as a suppository. She grimaces. But 
she has already been at it for an hour. The odds that seizures will 
kill Preston increase every year; the damage in his brain may soon be 
permanent. She is compelled to try.

"OK," Ana says as she fills the capsules. "It's not going to be pretty."

This time, she walks to him without a smile. She leads him into the 
bathroom and pulls down his diaper. She muscles him close.

Preston squeals. Once. Then again.

"I know!" Ana pleads. "I'm sorry!"

His cries fade to whimpers. His eyelids twitch with another seizure. 
Ana sits on the toilet, holding him on her lap as he quivers in her arms.

"It's OK," she whispers. "It's OK, Boo-Boo."

Seven months and 1,600 miles after their journey began, Ana has 
finally given Preston his first dose of marijuana.


Medical marijuana has made Colorado a promised land for desperate 
parents trying to save their children.

Children have arrived here nearly lifeless. Families have lived out 
of motels when they couldn't find housing. Parents have shown up at a 
medical marijuana provider's house in the middle of the night.

At least two children and one woman across the country have died 
while their families prepared to move to Colorado for medical 
marijuana. One child who made it here died when the treatment didn't 
help her condition enough. Her mother moved back home alone.

But no one knows more than anecdotes because Colorado does not track 
how many families come to treat their children with medical marijuana 
- - although it's in the low hundreds - or where they go.

No agency thoroughly regulates the treatment providers, beyond basic 
licensing. No rules govern the right formulation or dosage of the 
marijuana extract at the core of the treatment. No studies 
conclusively document the side effects.

Most important, no one knows how often it works.

A handful of organizations have sprouted in the past couple of years 
to offer support to parents moving to Colorado and those already 
here. Communities of families have grown up to provide advice and 
encouragement and a happy source of friendship.

But, when parents such as Ana Watson arrive with little more than a 
desperately sick child and a hope to make it better, they walk into 
uncharted territory. They become part of a medical experiment that 
plays out in living rooms, not doctors' offices.

"I can't be the parent who didn't try," said Janea Cox, a mother from 
Georgia who brought her daughter to Colorado in March for treatment 
of seizures that left her unable to even breathe on her own. The move 
meant breaking up her family; her husband remained at home in Georgia.

"Colorado represents hope at this point," she said. "This is the 
state of hope."

A spectrum of illnesses afflict the children coming to Colorado for 
medical marijuana: cancer, autism, Crohn's disease. Most, though, are 
seeking help for incurable forms of childhood epilepsy - diseases 
with names taken from medical-journal bylines: Dravet syndrome, 
Lennox-Gastaut syndrome and Doose syndrome.

The migration began just over a year ago, when CNN aired a 
documentary featuring a Colorado girl named Charlotte Figi, whose 
constant seizures caused her to stop speaking for months. While 
taking a form of the marijuana treatment, the seizures subsided, and 
she bloomed anew into a happy child seen laughing and playing in 
video clips. News stories began reporting that other children were 
seeing similarly miraculous results. To parents of kids with severe 
disorders, the articles seemed almost out of a storybook. So it was 
fitting that the brothers who grew the marijuana for the kids named 
their product Charlotte's Web.

Smaller numbers of children in California and other states have also 
begun to use marijuana to treat seizures. But what makes Colorado the 
epicenter is the state's large medical marijuana system, which allows 
for kids to be registered patients; the growing community of families 
with sick children; and the feedback loop of publicity that surrounds 
the treatment. Every happy story about a family seeing success with 
cannabis in Colorado pushes another family to move here.

Today, there are 427 children under 18 on the state's medical 
marijuana registry, including 13 under 2 years old. That total number 
is up from just 60 in August 2013, when the documentary aired. More 
arrive every month.

This is marijuana that often comes in medicine bottles, an oil 
extract from cannabis plants that is frequently squirted under a 
patient's tongue. It's the opposite of most commercial cannabis. 
Rather than being high in THC - the plant's psychoactive chemical - 
the marijuana is low in THC and rich in CBD, a compound that does not 
get users stoned but has shown medicinal potential.

The few, small studies of its efficacy, though, are preliminary and 
even disputed. Federal laws against marijuana have hampered research 
on CBD for the past four decades. As a result, states have 
increasingly passed their own laws legalizing CBD, based on little 
more than stories such as Charlotte Figi's and the hopes of families 
following in her path.

An early and oft-reported survey of children on Charlotte's Web found 
that 80 percent who tried it eliminated at least three of every four 
of their seizures. Now, even one of the specialists involved in that 
study questions whether it was overly optimistic. Subsequent studies 
have suggested the response rate might be closer to 30 percent or, 
perhaps, even lower.

It's not just that parents are taking a gamble by moving to Colorado. 
It's that they don't even know the odds.

"When these kids come, we hear a lot about it," said Dr. Larry Wolk, 
head of the Colorado health department and a skeptic of the 
treatment's success. "They get their CBD oil or their Charlotte's 
Web. And if they respond, we continue to hear about it. If they 
don't, they quickly disappear."

Like all of the parents coming to Colorado in search of a cure, Ana 
Watson hopes hers will become a success story. Staying in North 
Carolina offered no hope for Preston. Still, she can't predict what lies ahead.

The journey would be harder and more complicated than she ever imagined.

Preston's journey

Preston's baby book begins with pictures from a sonogram.

"It's a boy!" the sticker on the page proclaims.

Turn the page, and there's a picture of Preston in a white onesie. 
Then a picture of Preston sitting in a kid-sized Jeep.

On the next page is a picture of Preston with his head swaddled in 
gauze, a thick bundle of electrical wires poking out of the top of 
the wrapping like a bizarre ponytail.

"The Journey" is the title of this new section in the book.

It sounds so much better than calling it an ordeal.

A family photograph of Preston as a baby.

Ana was only 19 when she learned she was pregnant with Preston. She 
was a college freshman who had to take a break from school and live 
with her parents for a few months in rural Whitsett, N.C., while she 
prepared for motherhood. Her pregnancy was normal, aside from the 
delicate tremors she sometimes thought she felt in her womb. Her high 
school sweetheart, Preston's father, drifted out of her life. He has 
never seen Preston in person.

After Preston's birth, the doctors told Ana that his strange leg 
twitches were common - the result of underdeveloped muscles. It was 
three months later that she learned the doctors were wrong.

She was giving Preston a bath - not his first, not unusual. But then 
his eyes rolled back in his head and his face went white and his 
little body began to shake and Ana was certain he was dying. At the 
hospital, doctors quickly sent her home. Lots of kids have random 
seizures that never recur, they said. But Preston's did.

Ana doesn't remember what Preston's first word was. What she does 
remember is that first word arrived right on time. As did his first 
crawls. And his first steps.

It wasn't until his second year of life that Ana began to notice the 
toll the seizures were taking. When other kids Preston's age were 
learning more words and stringing them into sentences, he didn't. 
When walking and grasping led to running and catching for other 
children, it didn't for Preston. It was as though his life ground to 
a stop, even as time ticked on.

The neurologists were baffled and kept hunting for new medicines.

They started with a drug called Depakote when Preston was 3 months 
old. But the seizures continued - as did the new treatments: Klonopin 
and Felbatol and Keppra. Zonegran and Topamax and Diamox and Banzel. 
Vitamin infusions. A special high-fat diet. An implanted electrical 
nerve stimulator. There were two other drugs not yet fully approved 
by the federal government that cost hundreds of dollars a month. 
There was another that has also been suggested for use in executions.

The government safety sheets for each drug listed dozens of side 
effects. Tremors. Problems with walking or coordination. A 
potentially fatal rash. Panic attacks. Thoughts of suicide. Aggression.

To Ana, it sometimes seemed as if what epilepsy didn't take from her 
son, the drugs would. But she also knew that just one year of 
uncontrolled seizures meant a 1 percent chance of dying. The longer 
Preston's seizures ran riot, the likelier epilepsy would kill him.

"You know you're fighting for your child," she said. "You just do 
whatever it takes to get what you need for your child. People slack 
off. You have to stay on top of them."

Being Preston's mother taught her not to cry because tears won't make 
her son better. For her, there is a process: Try one thing, then move 
on to the next. Lessons can be learned and applied.

So Ana kept searching for a cure.

Her bookshelf at home charted the journey and spoke to her struggle. 
First came "What to Expect in the First Year." Then "Keeping Faith." 
Then "Delmar's Drug Reference for Health Care Professionals." Then 
"Three Weeks to Say Goodbye."

Ana married, and Sydney was born. She and her husband fell into debt, 
in part because of medical bills before Preston qualified for 
Medicaid. Their marriage collapsed under the stress, and Ana moved 
back in with her parents. She tried working full time, then cut back 
to part time.

It wasn't until Preston was 6 years old that doctors finally put a 
name to his condition: Dravet syndrome. And in some ways, that was 
worse than not knowing at all because it meant there was no cure to find.

"Seizures all of the time"

At the North Carolina Children's Hospital in Chapel Hill in May, Dr. 
Robert Greenwood hustled into the meeting room wearing a tie covered 
with Dr. Seuss characters.

"It's been a constant struggle of trying to limit the number of 
seizures he has," Greenwood said of Preston, who at age 1 started as 
a patient of Greenwood's. "We have tried literally everything."

As a pediatric neurologist, Greenwood had treated hundreds of kids 
with epilepsy in his 37-year career. But Preston's case was a unique challenge.

"In his case, the biggest problem is he has seizures every day," 
Greenwood said. "Multiple seizures. At times, he could walk down the 
hall and you could see 10 to 20 seizures happening, little jerks. So 
he was literally having seizures all of the time."

Dravet isn't like other epilepsies.

While some can be treated by targeting the specific areas of the 
brain where the seizures' electrical overloads originate, Dravet's 
seizures come from everywhere, the result of a genetic mutation that 
occurs in every nerve cell in the brain.

Some epilepsies respond well to generalized anti-seizure drugs. But 
the specific genetic mutation of each Dravet patient is different, 
meaning what works for some won't work for others. Preston has at 
least four different kinds of seizure types, and they varied in 
severity and frequency as he grew older.

April 15 Ana Watson keeps a sharp eye as Preston goes into a grand 
mal seizure on the frontage road near Castle Rock on Interstate 25 on 
their way from Colorado Springs to see Jason Cranford at his Rifle 
Mountain Dispensary grow in Boulder. Ana is visiting from North 
Carolina to change her residency and apply for a medical marijuana 
red card for Preston.

There are the grand mals, known clinically as tonic-clonic seizures, 
that are full of violent convulsing that can last minutes. Preston 
falls into one about once a week. But much more common are the little 
eye flutters. In medical terms, they are called myoclonic seizures. 
Ana calls them "blinkies." They look as though Preston is on the 
verge of sneezing.

He can have hundreds of blinkies a day. And, though they usually pass 
gently, each one is like an eraser across his brain's chalkboard. 
Over and over, new development is wiped clean by the seizures. So, 
over and over, he learns the same things.

At 12 years old, Preston cannot spell his name. He cannot reliably 
count to 10. He is still learning his colors. He doesn't know his 
mom's name or where he lives or how to call home if he gets lost. He 
wobbles when he walks and falls over easily.

Myoclonic seizures Brief seizures characterized by little muscle 
jerks. Preston's eyelid flutters are a myoclonic seizure.

Sometimes, Greenwood and Ana would find a medicine that worked for 
Preston. The seizures would lessen and Preston would start to walk 
more steadily. But, just as quickly, Preston's brain would rewire 
itself back to a broken state and the seizures would return.

Sitting in the hospital meeting room, Greenwood said there was little 
more he could do for Preston with the medicines available. Without 
something new, Preston's seizures would continue into adulthood - 
assuming he didn't die before then.

Asked whether Preston would ever be able to speak a complete 
sentence, Greenwood's eyes lit up with the idea, then quickly dimmed.

"That would be really nice if he got that far," he said, "but there's 
not much evidence right now he's moving toward that."

Keeping daydreams in check

Preston's eyes slowly opened somewhere under the fluff of his 
mother's comforter.

"Time to get up, Boo-Boo," Ana said to him. "Come on."

A voice tiptoed back to her with the peanut-butter-mouth slur of a 
child's early words: "Wuh moh minuh."

"OK," Ana said, "One more minute."

May 7 Preston resists his mother's gentle requests to get up as he 
curls up to his little sister, Sydney, 8. Ana Watson's mornings quite 
often start with both of them in her bed at her North Carolina home.

It was about a month before the move away from their little brick 
house in Greensboro, N.C., and, sometime in the night before, Preston 
left his own bed and sleepwalked into Ana's. Sydney was already 
there. When Ana woke before dawn, she was nestled between children.

Once begun, the morning ticked along with practiced precision. Ana 
made the fried potatoes Preston only ever wants for breakfast. 
Eight-year-old Sydney quietly dressed and got ready on her own, until 
it was time to ask mom to fix her ponytail.

Finally dragging Preston from bed, Ana sat him in his 
skull-and-crossbones pajamas in front of the television and turned on 
a video of Barney the dinosaur. Sydney walked by and scrunched up her 
face. She had already outgrown Barney.

But Preston watched rapturously, planting his elbows onto his knees 
and his head into his hands. His eyes are a deep walnut color and are 
framed by long eyelashes. Brown hair swirls atop his head in casual 
rebellion. His smile is all in the top lip, pulling up past his gum 
line to reveal a row of glimmering teeth.

Slowly working his way through the potatoes, Preston's hands stopped 
and his eyelids flickered for a few seconds before popping back open. 
The first seizure of the day had come and gone.

Over the fireplace hung a photo of Preston in a straw cowboy hat. 
He's shirtless, leaning onto his left elbow. His mouth is closed and 
his eyes set in a stoic glare, and he appears startlingly mature - a 
boy trying to look like a man trying to look like a rock star.

There are times, Ana said, when she can almost see what Preston could 
become if the seizures would just let him.

Everyone in her family has their own vision of what Preston might be. 
Ana's mom sees Preston getting a job at a park running a lawn mower. 
Ana's dad - the man who taught Preston how to be a boy, to love 
mowers and tractors, and to shout, "Crank it!" - imagines playing 
catch with his grandson.

Ana tries to keep her daydreams in check. What good is it to view her 
child as something he's not? But there is one thing she hears the 
parents of Dravet children often say, and, yes, she hesitantly 
admitted, she would like it, too.

"The big thing that parents are always saying," Ana said, "is they 
want their child to say, 'I love you.' "

A leap into the unknown

Ana's decision to move had seemed like an easy one. In late 2012, she 
saw on Facebook a video of a California man using medical marijuana 
to treat his son's seizures. "This brought tears to my eyes!" she wrote then.

The documentary about Charlotte Figi aired the next summer, and by 
late 2013 - as Preston approached his 12th birthday stuck in the same 
developmental rut he had been in for his previous nine - the online 
whispers of a marijuana miracle in Colorado had turned into a roar. 
One by one, other Dravet children's parents - with whom Ana had 
become close friends online but never met in person - began arriving 
in Colorado, posting hopeful updates on their children's progress. 
The hope tugged at her.

"We've pretty much tried everything else we can," she reasoned.

And so this was the logical next step. A leap into the unknown.

The closer the move came, the worse Preston seemed to get. He 
suffered a grand mal seizure at the fundraiser Ana and her parents 
put together to raise the $15,000 needed for the move. He suffered 
another grand mal returning from a last-second beach getaway.

He grew reluctant to eat or drink, which left him not only weak but 
also not getting the right dose of conventional medicine hidden in 
his food. The day the movers arrived, Preston sat on the grass 
holding his grandmother's hand while the blinkies attacked.

"Wha doin'?" he shouted between seizures, because he didn't know what 
it meant for the movers to be there.

In advance of the move, Ana reduced the dose of one of the three main 
seizure medicines he takes - a drug called Onfi - because she had 
heard from other parents that CBD amplifies it. He was now taking 
about a third less than what Greenwood had prescribed, although she 
didn't tell the doctor her plan.

Greenwood had been cautiously supportive of Ana's move, in part 
because it preserved some of his input into Preston's care. Tell a 
family no when they're on the trail of hope, and they'll leave you 
behind. For all of the parents asking him about moving to Colorado - 
Ana was not the first - Greenwood had told them the same thing: 
There's no hard evidence it works, but there's no hard evidence it's 
causing harm, either.

When he looked at the exodus of families heading to Colorado, 
Greenwood worried about the people who might prey on their 
desperation. But he also worried about the enthusiasm that might 
spring from their hope. He had warned Ana strongly against taking 
Preston off his other seizure drugs.

"He is quite capable of going into a seizure that is basically all 
the time - all day and all night," Greenwood said.

After the movers left, Preston's blinkies hit even worse. Drool 
dribbled off his chin and onto his T-shirt. Milly, who was watching 
him while Ana packed up the last things, sensed a bigger seizure 
building. She fanned Preston, hoping to calm the blinking.

"You think you'd get used to seeing him like this," she said. "But it 
scares me to death every time."

Hope for Preston

It took 12 days after arriving in Colorado for Ana to get the 
marijuana oil for Preston's first dose. Twelve days of waiting. 
Twelve days of seizing. Twelve days of wondering what would happen.

She had to wait another three days after picking up the oil for a lab 
report to come back to confirm its potency. When the day of the first 
dose finally arrived, in mid-July, Ana bounded into the kitchen of 
her new home to pull a bottle of the oil from the fridge.

She cracked it open and burst into giggles.

"It smells like marijuana," she laughed. "I didn't think it would."

Holding the bottle of amber-colored oil in her hand, she scanned the 
report to figure out how much she should give Preston. But the report 
was indecipherable. How could she convert these numbers into the 
recommended dose?

She checked her phone for online answers. Finally, eager to move on, 
she set the phone down.

"We have a special squirt-squirt we need to do, OK? You need to be a 
big boy," she said.

Walking toward him, she had no idea of the frustration ahead, and no 
inkling of the discomfort she would inflict on them both in her 
effort to bring relief. All she knew as she looked toward her seizing 
son was that she held in her hands the latest, best chance to move 
his life forward.

An hour-and-a-half later, as Preston quivered on her lap in the 
bathroom following the first dose, she realized this journey would be 
tougher than she hoped.

Ana returned to the kitchen and shakily exhaled.

"That," she breathed back in, "was pain."
- ---
MAP posted-by: Jay Bergstrom