Pubdate: Mon, 27 Feb 2012
Source: Gazette, The (Colorado Springs, CO)
Copyright: 2012 The Gazette
Contact: http://www.gazette.com/sections/opinion/submitletter/
Website: http://www.gazette.com/
Details: http://www.mapinc.org/media/165
Author: Katie Kerwin McCrimmon

TEEN SAYS MARIJUANA HAS BEEN LIFESAVER

An attack seizes Chaz Moore's body, stealing much of his breath.
Spasms in his throat, lungs and diaphragm cause the 17-year-old to
speak in hiccups, one syllable at a time.

He says it feels like a grown man is jumping on his chest as the
muscles in his belly roll like waves.

Chaz opens a jar labeled MMJ, pulls out some fresh green buds and
crumbles the marijuana into a small pipe. He lights up the bowl and
inhales as deeply as possible through the spasms, turning to blow
smoke out his bedroom window.

A second puff, a deep cough and the attack passes.

Chaz is one of 41 people younger than 18 in Colorado who have a
medical marijuana license, according to the most recent data available
from the Colorado Department of Public Health and Environment.

And he's convinced that marijuana is saving his life.

His doctors have told him he is one of about 50 people in the world
diagnosed with myoclonus diaphragmatic flutter, an affliction causing
muscle spasms that can recur dozens of times a day.

Until a couple of years ago, Chaz was a healthy kid, except for
childhood asthma that he was outgrowing. He played in his school band
and on a baseball team.

Then he started getting hives and the mysterious spasms. At first, the
attacks came three to five times a week and his family rushed him to
the hospital each time. Doctors tried treating him for allergies and
gave him inhalers, along with high doses of painkillers and
anti-anxiety drugs to relax his body.

"One week, we went nine times to the ER," says his dad, Shan Moore.
"We were going nuts, just totally freaking out. Nobody knew what was
wrong."

Doctors in Colorado Springs referred the family to National Jewish
Health in Denver, where Chaz had an attack in an exam room.

One of the doctors who observed the spasms had treated a patient with
the same rare illness nearly 20 years ago.

Chaz finally had a diagnosis and began treatment at Children's
Hospital Colorado, where his pediatric neurologist tried a variety of
medications. At one point, he was taking a cocktail of 16 pills three
times a day.

The medications would work for a time but not consistently.

So Shan Moore says he raised an "insane" idea with Chaz's doctor -
marijuana. He had seen reports online that it might help patients with
multiple sclerosis.

The father says he hesitated to consider marijuana in part because his
relationship with the drug goes "way back."

Shan Moore first tried marijuana at age 10, became a self-described
pothead and used everything else he could get his hands on. By his
mid-30s, he says, he was dealing drugs and wound up in prison for
three years when Chaz was 7.

Now 41, Moore says he has been clean for several years. The last thing
he wanted to consider was getting his son started on marijuana.

But the effects of the high doses of the prescription drugs were also
alarming. The family decided to give marijuana a try.

Chaz says he had tried pot once before and didn't like feeling
high.

Now he rarely experiences that feeling because the family shops for
low-potency marijuana.

He has fine-tuned his medication during the past year. He starts each
day with edibles such as marijuana-infused peanut butter and jelly
sandwiches or marijuana cheesecake.

The food has higher levels of chemicals that seem to fend off Chaz's
attacks and stay in his system longer, without the psychoactive
effects that cause a high. When an attack strikes, he smokes for
immediate relief.

His friends have never hit him up for marijuana, Chaz says, and he
believes kids who abuse the drug are harming patients.

"You're taking away from my medicine," he says. "Even though you're
out there enjoying it, you're messing with my medicine."

Chaz no longer uses other medications, but the marijuana created a
problem.

His school district, Harrison School District 2, refused to allow the
school nurse to give him marijuana. The family switched Chaz to a
closer high school, hoping he could walk home when he had an attack,
use marijuana and then walk back.

But the family says district officials didn't like that idea, either,
telling them they feared Chaz would be impaired and disruptive.

District spokeswoman Jennifer Sprague declined to discuss Chaz's case
and says federal and state law bar the district from administering
marijuana.

"I was doing fine," Chaz says. "I wasn't disrupting anybody. My eyes
weren't red. I wasn't smelling of pot. I was doing all of my work and
wasn't hurting anyone."

Last April, after he started having as many as 35 attacks a day, Chaz
enrolled in an online school.

Now he says he feels like he's on house arrest, stuck in his bedroom
with a small Dell laptop.

He's lonely and says he sometimes loses track of what day it is
because of the monotony. He's more than a year behind his peers but
determined to get an education and become a counselor for kids in hospitals.

His dad shakes his head over the battles they've fought.

"Medical marijuana saved his life but ruined it all at the same time,"
Shan Moore says.

The family spends about $1,000 a month on various marijuana products
and shops at five Colorado Springs dispensaries. The father and son
have become regulars on the pro-marijuana circuit, speaking at
conventions.

Being so vocal about the benefits of marijuana has been costly. The
father says he lost one job because his bosses didn't like having such
an outspoken employee. He now splits wood and trims trees, picking up
jobs where he can. His wife works at a Denny's.

Chaz is on Medicaid.

The father says, altogether, they visited emergency rooms 117 times
before starting marijuana. Now Chaz hasn't been to the ER for more
than a year and only goes to the doctor for routine checkups.

He doesn't like marijuana - the taste of the food or the smell of the
smoke. He feels guilty using it in the home he shares with his
grandmother. He knows the damage drugs can do to a family. Right now,
he sees no other options.

"If I couldn't access marijuana," Chaz says, "I would probably be
dead."
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