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article imageUtah mother seeks new marijuana treatment for epileptic son

By Nancy Houser     Oct 11, 2013 in Health
Huntsville - A Utah mother is seeking a marijuana treatment for her son who has severe epilepsy, The treatment, cultivated by the nonprofit Realm of Caring in Colorado Springs, Colorado, is low in THC that creates a high in traditional marijuana for its users.
April Sintz's 7-year-old son, Isaac, is developmentally delayed due to Dravet Syndrome, a rare and catastrophic form of intractable epilepsy that begins in infancy.
Ms. Sintz brings in a weekly tutor to help her son with his letters. However, even though Isaac is able to grasp shapes and sounds, he soon forgets them. According to the Salt Lake Tribune, "It’s one step forward and two steps back," said Sintz, who hasn’t lost hope that Isaac will one day read.
Conditions of Dravet Syndrome
-- Delays in the child's behavioral and development
-- Issues with the child's movement and balance
-- Orthopedic conditions
-- Delayed language and speech issues
-- Issues in growth and nutrition
-- Sleeping difficulties
-- Chronic infections
-- Sensory integration disorders
-- Disruptions of the autonomic nervous system. regulates sweating and body temperature
An herbal treatment for epilepsy
The mother has not given up on her pursuit of an "herbal" treatment. She found that the medical marijuana dispensary in Colorado is providing a treatment that has worked miracles for children with severe, intractable forms of epilepsy. The dispensary is owned by the Stanley brothers, one of the state's largest marijuana growers and dispensary owners who cross-bred a strain of marijuana that is high in CBD and low in THC,
Even though the treatment for children with severe epilepsy is not from medical marijuana, the plant is cultivated by a medical marijuana nonprofit business in Colorado Springs, Colorado. The cultivated plant, when finished, is high in cannabidiol (CBD) but low in THC, the tetrahydrocannabinol. THC is the psychoactive chemical of marijuana that creates the high that causes people to smoke it.
Marijuana and Dravet Syndrome
The marijuana that is cultivated into an oil contains 0.5% THC and 17% CBD, too low for people to buy it for recreational purposes. CNN reports that when it was used for 6-year-old Charlotte Paige, a young girl who also has Dravet Syndrome, she went from over 100 seizures a day and over 300 grand mal seizures a week ... to one seizure a week.
Charlotte's seizures began when she was 3-months-old. After struggling for years with the medical field to find out what was the matter, the parents took her to the Children's Hospital in Colorado. Little Charlotte was found to have the SCN1A gene mutation, which is common in 80% of Dravet Syndrome cases.
Intractable forms of epilepsy in children
Intractable forms of children is a form of epilepsy where up until now, it was impossible for seizures to be controlled by medication. According to Tennessee's Le Bonheur Children's Hospitals, the most common form of treatment for children with intractable epilepsy is surgery:
(1) Hemispherectomy---One side of the brain is removed or disabled. This surgery is performed only if seizures have not responded to medications and other types of surgeries.
(2) Corpus callosotomy---The nerve fibers between the two sides of the brain are severed (cut). This interrupts the spread of seizures from one side of the brain to the other. The result is that seizures become less severe.
(3) Resective surgery--The part of the brain that causes seizures is removed. This often cures epilepsy.
(4) Vagus nerve stimulation---A small device called a vagus nerve stimulator is implanted beneath the skin of the chest. A thin wire that's attached to the device electrically shocks the vagus nerve in the neck. This has been shown to stop or reduce the severity of seizures.
Hope 4 Children with Epilepsy
April Sintz is a member of Hope 4 Children With Epilepsy. It consists of a group of Utah Mormon moms who have found a lawmaker, Rep. Gage Froerer, R-Huntsville, who is willing to help them secure a way to legally import an extract from a cannabis plant.
Bringing the extract to Utah may not require legislation, said Froerer, the same lawmaker who pushed a ban on a synthetic form of marijuana, "spice." But he has committed to sponsor a bill if needed.
According to the Salt Lake Tribune Froerer he is seeking buy-in from the Utah Substance Abuse Advisory Council to treat the extract as something other than a controlled substance, allowing families to import it without risk of being arrested.
"It’s not a drug, it’s not medical marijuana," said Rep. Gage Froerer, R-Huntsville.
More about Utah mother, marijuana treatment, Son, severe epilepsy, Dravet Syndrome
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