Pubdate: Mon, 02 Mar 2015
Source: Seattle Times (WA)
Copyright: 2015 The Associated Press
Contact:  http://seattletimes.nwsource.com/
Details: http://www.mapinc.org/media/409
Author: Kimberlee Kruesi, The Associated Press

YOUNG GIRL'S STORY MAY LEAD IDAHO TO OK POT OIL

10-Year-Old Suffers Rare Kind of Epilepsy

Family Says Extract Could Ease Her Seizures

BOISE, Idaho (AP) - Ten-year-old Alexis Carey has a rare but 
intractable form of epilepsy, Dravet Syndrome. The genetic disease 
causes severe and multiple seizures, which often leave parents 
guessing if the terror of watching their child seize up will pass or 
turn fatal.

Her Boise, Idaho, family learned that oil extracted from marijuana 
had helped other children and wanted to see if it would help Alexis, too.

"Parent to parent, when you're in a small community and 10 people 
that you know are all having success, that's no longer anecdotal," 
said Clare Carey, her mother. "That's hope."

But Idaho's stringent marijuana laws do not allow for medicinal use. 
The family began lobbying lawmakers to decriminalize the oil almost 
two years ago. Now, they've got some legislative backers and an 
upcoming hearing, as Idaho joins a larger movement to loosen laws to 
allow the use of marijuana extract oil.

Twelve states have legalized the oil while still banning medical 
marijuana. Virginia legalized the oil Feb. 26. In Utah, lawmakers 
have given initial approval to let those with chronic and 
debilitating diseases consume edible marijuana products, while still 
banning smoking.

Marijuana extract oil first received attention when a Colorado family 
fought and won for access for their daughter, who also had Dravet 
Syndrome. It is similar to hemp oil, which is legal in Idaho and can 
be bought in grocery stores.

With no known cure for Dravet Syndrome, children are often prescribed 
a cocktail of medications to counter the seizures. However, the heavy 
drugs often come with side-effects that can permanently damage a 
child's developing liver, kidneys and other organs.

Proponents of cannabidiol oil, a non-psychotropic extract of 
marijuana, argue that it reduces the amount and length of seizures in children.

Over time, Carey hopes that the oil would also reduce the number of 
medications her daughter relies on.

"Like any parent, you never give up hope that you can get complete 
seizure control," she said. "Children die from Dravet by any one of 
the seizures. Alexis could have a seizure that may not stop; we never 
really know."

Alexis began having seizures when she was 2 months old. But even in 
2003, her mom says a lack of awareness of the disease led to many 
doctors not automatically suspecting it could be a rare, genetic disorder.

It wasn't until Alexis lost all speech and potty control when she was 
2 that doctors determined she had Dravet Syndrome, Carey said.

Since then, Alexis' parents have put her on a variety of diets and 
medications to help reduce the seizures but the disease is tricky to 
manage. Dravet Syndrome often causes a variety of different kinds of 
seizures, but medications typically target one particular type.

Alexis' seizures usually occur at night, which means one of her 
parents regularly sleeps with her and monitors her sleep patterns. 
During the day, Alexis requires constant supervision. While most 
10-year-olds freely run and jump around, Alexis walks- albeit 
sometimes unstably and with help going up and down stairs.

Carey says working with Idaho's Republican-controlled Legislature has 
been easier than anticipated.

Lawmakers who resisted the idea at first blush have warmed up to the 
idea, she said.

This year, the bill is endorsed by Republicans Sen. Curt McKenzie and 
Rep. Tom Leortscher. Both are chairs of the legislature's State 
Affairs Committees, panels that often get tossed controversial 
legislation and have a high bar for clearance.

The measure unanimously passed the Senate committee during its 
introduction hearing, which means it now goes on to a full hearing in 
front of the committee.

Yet the bill must survive a Statehouse that approved a resolution in 
2013 vowing never to legalize marijuana for any purpose.
- ---
MAP posted-by: Jay Bergstrom