Pubdate: Fri, 09 May 2014
Source: Coon Rapids Herald (MN)
Copyright: 2014 ECM Publishers, Inc.
Contact:  http://abcnewspapers.com/index.php?Itemid=28
Details: http://www.mapinc.org/media/4979
Author: Mandy Moran Froemming

MEDICAL MARIJUANA LEGISLATION CLOSE TO HOME FOR ANOKA FAMILY

Like many parents, every decision Kari and Kirk Olavson make about the
care of their 3-year-old son has his best interests at heart.

But it's different for them. And for Jacob.

Jacob had his first seizure when he was three days old. Since then the
Anoka family has coped with the chronic uncertainty and never-ending
medical treatments that come with caring for a child who often has
dozens of seizures a day and at the worst, as many as 40. After trying
medication after medication that sometimes provides short-term relief,
the seizures always come back.

"It seems like whenever we try something new, he does really well for
awhile, and then he gets used to it," Kari said.

The couple are part of Minnesotans for Compassionate care, a group
leading the charge and lobbying for the legalization of medical
marijuana in Minnesota.

"Frankly, we want to try this for Jacob because we have run out of
other options," Kirk said.

This week state lawmakers have been debating the legalization of
medical marijuana, which has been reported to alleviate symptoms for
patients with things like cancer, HIV and AIDS along with seizures
resulting from epilepsy or other diseases.

The family, including Jacob, has made multiple trips to the
Legislature during the session, meeting with elected officials to
advocate for legalization and sitting in on hearings.

Doctors are in the process of diagnosing Jacob with Lennox-Gastaut
syndrome, a severe and hard to control form of epilepsy.

The seizures have denied his brain a chance to develop. He can't walk
or talk or eat solid foods. He can't hold his own head up and can
barely roll over.

Although he's tall for his age -- Kari just had to buy him 5T pants --
developmentally, Jacob is 3 or 4 months old.

Last October Jacob had brain surgery where two-thirds of the band of
fibers that connects the two hemispheres of the brain were severed to
control tonic seizures.

In January, Jacob had one month seizure free. He started to
giggle.

But then the seizures returned and Kari and Kirk watched as the gains
he made began slipping away.

Kari said Jacob's neurologist said he would sign a letter of support
for Jacob to receive medical marijuana treatment. In states like
Colorado where it is legal, support is required from two doctors.

Jacob would require treatment with oil made from the high-cannibidiol,
low-THC plant.

Success in other states

The Olavsons know of several cases where children suffering from
uncontrollable seizures have seen success with this type of treatment.

Most notable is Charlotte Figi, a girl from Colorado, who, after
starting to take a specific strain of high-CBD, low-THC cannabis, has
had her seizures drop from one every 20 minutes to one a month. Once
catatonic and at the end of her life, she has regained her ability to
talk, eat and play.

Charlotte's mom, Paige Figi, was in Minnesota last week to testify in
front of the House Rules Committee, which approved a medical marijuana
bill that has been amended to not allow a smoked version of the plant,
restricting it to oil or pill form.

"These kids probably aren't going to live to adulthood," Figi said.
"This isn't a gateway drug. For my daughter, it was an exit drug. It
got her off all of the other pharmaceuticals."

Figi also said 82 percent of children trying this form of medicine see
a 50-100 percent reduction in seizure rates.

The nonprofit that administers the production of the marijuana is
doing double-blind placebo clinical trials in South America, according
to Figi.

Jacob is one of 10,000 children worldwide on a waiting list for
Charlotte's Web, the marijuana strain named after Charlotte Figi. But
even if medical marijuana were legalized in Minnesota, it wouldn't be
as easy as importing the drug from Colorado.

Because of federal laws, medical marijuana cannot be taken across
state lines. If legalized, it would need to be grown in Minnesota.

Gov. Mark Dayton has reservations about the legalization.
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MAP posted-by: Matt