Pubdate: Fri, 28 Feb 2014
Source: Virgin Islands Daily News, The (VI)
Copyright: 2014 Virgin Islands Daily News
Contact:  http://www.virginislandsdailynews.com/
Details: http://www.mapinc.org/media/3486
Authors: Robert McCoppin and Duaa Eldeib, ChicagoTribune

PARENTS PUSHING TO GET MARIJUANA EXTRACT FOR CHILDREN WITH EPILEPSY

CHICAGO - Nicole Gross was so desperate to find relief for her son's 
near-constant, debilitating seizures that she moved him from 
Naperville, Ill., to Colorado so he could receive medical marijuana.

Weeks after Chase Gross, 8, started taking a marijuana oil extract 
through a dropper, his mother believed she saw a dramatic decrease in 
the number of daily seizures he suffered, allowing him to make 
developmental leaps, like dressing himself and learning several new 
sign language words, since his condition has left him unable to speak.

Nicole Gross became so convinced of pot's effectiveness in treating 
her son's severe epilepsy that she has joined a growing number of 
parents and advocates lobbying Illinois to change its rules-not only 
to add epilepsy to the list of qualifying conditions, but also to 
make medical marijuana available to children, as Colorado and several 
other states do.

The drug's positive effects on Chase, his mother said, was "shocking."

Public opinion has been shifting in favor of medical marijuana: 
Twenty states have legalized it, and the vast majority allow children 
to get it. But its use, particularly among juveniles, remains controversial.

Marijuana is still illegal under federal law, where it is classified 
as a dangerous substance with no medical value. While its proponents 
cite largely anecdotal evidence as they lobby to expand the use of 
medicinal pot for a growing number of conditions, many physicians 
warn there's not nearly enough research to demonstrate pot's 
effectiveness for treating sick adults-let alone children.

Dr. Kent Kelley, chief of pediatric neurology at NorthShore 
University HealthSystem's Evanston's hospital, treats several 
children who suffer from seizures and whose parents have asked him 
about marijuana as a last-resort option. He advises them to wait and 
try to seek out clinical trials for their children.

"It's a hard thing to ask parents. On the other hand, it may not be 
as good as we think, so we want data to know how effective it is and 
what the risks are," Kelley said. He added he would support the 
proposed change in the Illinois law but hopes more clinical research 
will take place first.

The American Academy of Pediatrics notes that while research on pot's 
potential therapeutic benefits is scarce, the drug's harmful effects 
on memory, motivation, judgment and motor control are well-known.

Dr. Sharon Levy, director of the Adolescent Substance Abuse Program 
at Boston Children's Hospital, said using state laws to sidestep 
federal medical regulations makes bad public policy. She noted that 
marijuana abuse remains common among her patients, and that use 
during adolescence is associated with drops in IQ, and increased 
rates of schizophrenia and other psychiatric disorders.

While there may be rare special cases that warrant exceptions to the 
rule, Levy said drugs that derive from the marijuana plant, called 
cannabinoids, should go through the same rigorous testing and 
approval process as every other drug to show they work safely. 
Otherwise, she said, children may be taking something that ends up 
doing more harm than good, particularly for other conditions that are 
much more common than extreme forms of epilepsy.

"Failing to develop cannabinoids as medication is a disservice to the 
kids who may benefit from them," she said. "The answer is better 
regulation, not less of it."

Marijuana advocates counter that federal regulation has stood in the 
way of the very research that is needed. The U.S. Drug Enforcement 
Administration classifies marijuana the same as it does heroin, as a 
Schedule I controlled substance with no accepted medical use and high 
potential for abuse.

Yet of the 38,000 people who died from drug overdoses in the U.S. in 
2010, according to the Centers for Disease Control and Prevention, 60 
percent were related to FDA-approved prescription drugs, while 
reported deaths from marijuana are extremely rare.

Advocates argue that children with debilitating, sometimes fatal 
diseases don't have time to wait for the years it typically takes the 
FDA to approve a new medication. Many parents say they've already 
spent years giving their children legal prescription drugs that don't 
work or have horrible side effects, and they deserve access to other 
treatment options.

Before their struggle to save their son, Nicole and Randy Gross said 
they were the last people to support marijuana use. Randy Gross 
attended the Air Force Academy in Colorado Springs, where he met his 
wife, who was a biologist who later worked in a forensics lab.

Their feelings began to shift when they heard that other children 
with severe epilepsy were finding relief through marijuana. Chase is 
thought to have myoclonic astatic epilepsy, also called Doose 
syndrome, and his parents say that, before he started ingesting 
marijuana, he would have hundreds of short seizures each day.

But the oily extract they administer to their son is low in THC- the 
psycho-active component of marijuana that causes smokers to get 
"stoned"- and high in CBD, or cannabidiol, which has shown promising 
results in animal studies.

That strain of marijuana is known as Charlotte's Web, named for a 
5-year-old girl named Charlotte Figi, who gained national attention 
last year when CNN reported that the drug had drastically reduced her 
severe seizures.

Though Charlotte previously could not walk, talk or feed herself, she 
is now doing all those things and riding a bike, according to her 
physician, Dr. Alan Shackelford, who also helped approve Chase for 
medical marijuana use.

But even advocates like Shackelford, who estimates he's seen about 30 
children who are being treated successfully with medical marijuana, 
agree that the drug needs clinical trials to establish proper and 
standardized content and dosing. However, he said, time is of the essence.

About 200 kids are registered in Colorado to receive medical 
marijuana, according to the Colorado Department of Public Health and 
Environment. Children need approval from two doctors, not just one as 
for adults.

Dr. Larry Wolk, the department's director and chief medical officer, 
said it appears that most of the children approved to use medical pot 
have epilepsy, and the majority have come from out of state. Yet 
children make up only a small fraction of medical marijuana patients, he said.

Wolk worries that the spotlight on children brings medical 
expectations that the research has yet to support.

"It's possible that your child may not respond," Wolk said. "And it's 
also possible that even if your child does respond, you might be 
trading treating the seizure for creating a different kind of problem."

Despite calls for broader legalization, FDA officials say, not so 
fast. Spokeswoman Sandy Walsh said in an email that manufacturers and 
researchers must show new drugs to be safe and effective before 
they're marketed in the U.S.

Any efforts to bypass that process "would not serve the interests of 
public health because they might expose patients to unsafe and 
ineffective drug products," she wrote.
- ---
MAP posted-by: Jay Bergstrom