DiversityNursing Blog

Georgia Boy Among First To Receive Experimental Medical Marijuana Drug

Posted by Erica Bettencourt

Fri, Jan 02, 2015 @ 11:36 AM

By LIZ NEPORENT

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A 7-year-old boy is one of the first people in the country to receive a potent form of medical marijuana as part of an “extended use” clinical trial to reduce seizures.

Preston Weaver, who lives in Athens, Georgia, has Lennox-Gastaut syndrome which is a severe form of epilepsy. He experiences up to 100 seizures a day, although many are confined to his brain and aren’t noticeable to an observer. There is no known cure for the condition.

“Today’s the day, buddy. We’re not going to have any more of those,” his mom Valarie Weaver, 36, said she told her son as the headed to his first treatment Tuesday.

Her son can't see, walk or talk, Weaver said. Although he's 7, his behavior is more like that of a 2-month-old. But he lights up when he goes in the water and he seems to love the feel of the sun and the wind, Weaver said.

"Our hope is that this treatment will calm down his brain enough so that he will start communicating with us," she said.

Many of the drugs available to treat the syndrome don’t work long term, especially for children. Even with more than a dozen medications Weaver has had no relief.

The active ingredient in Epidiolex, the experimental drug that Weaver and one other child are receiving, is called cannabidiol. It’s also the main active ingredient in marijuana though it doesn’t produce a high.

Dr. Michael Diamond, the interim senior vice president of research for Georgia Regent University said the drug is not legal or approved for use by use by the Food and Drug Administration. The university’s current study, one of only a handful of trials for compassionate use being held around the country, will expand to include 50 children over the next few weeks.

“We are hopeful the drug will reduce the frequency and severity of seizures within a month, but we know it will not work for every child,” he said.

Georgia Gov. Nathan Deal approved the trials in April. It took some time to get additional clearance at the federal level, Diamond said.

“No one with a heart could hear the stories of these children and their parents and not want to exhaust every possibility to provide them with the treatment they need to combat this debilitating condition,” said Deal

Weaver told ABC News that she was grateful her son was accepted into the trial though she was disappointed the state legislature had narrowly failed to pass a bill that would have legalized the drug for use with sick children. But, she said, she’s not giving up.

"Even though Preston is on it, Preston and I are still going to fight for all the other ones too, we will be at the capital every single time, we need to be there until this becomes legal and every child in the state has the option for this treatment if they need it," Weaver said.

Source: http://abcnews.go.com

Topics: clinical trial, marijuana, medical marijuana, health, healthcare, nurses, doctors, Epilepsy, patient, treatment

Diet Stops Seizures When Epilepsy Drugs Fail

Posted by Erica Bettencourt

Wed, Oct 29, 2014 @ 02:48 PM

By JESSICA FIRGER

jackson small

When Jackson Small began having seizures at 7, his parents hoped and assumed at least one of the many epilepsy drugs on the market would be enough to get things under control. But one seizure quickly spiraled to as many as 30 a day.

"He would stop in his tracks and not be aware of what was going on for 20 or 30 seconds or so," his mother Shana Small told CBS News. Jackson was eventually diagnosed with juvenile myoclonic epilepsy, a type of epilepsy characterized by brief but often frequent muscle jerking or twitching.

But a number of medications typically prescribed to patients with this type of epilepsy were not effective. And so the quest to help Jackson gain control over his seizures led the family from their home in Orlando, Florida, to the office of a registered dietician at the NYU Langone Comprehensive Epilepsy Center in New York City.

They were there to discuss the medical benefits of heavy cream, mayonnaise, eggs, sausage, bacon and butter.

A lot of butter.

The plan was to treat Jackson with a diet that is heavy in fat, low in protein and includes almost no carbohydrates. It's known as the ketogenic diet and has long been in the arsenal of last-resort options for patients with epilepsy who are unresponsive to medication. Doctors may recommend a patient go on this special diet after unsuccessfully trying two or three prescriptions.

The diet works by putting the body in a "fasting" state, known as ketosis. "When we're fasting the body needs to find fuel so our body will break down fat storage and break down their own fat and enter a state of ketosis," Courtney Glick, the registered dietician who coordinated and fine-tuned Jackson's diet plan, told CBS News. "But with this diet, instead of breaking down the body's fat, the body breaks down dietary fat."

The ketogenic diet consists of as much as 90 percent fat. Some patients who feel they can't make such an extreme change adopt a modified Atkins diet, which is between 65 and 70 percent fat. It can be nearly as effective for controlling seizures, though every patient is different.

Though experts don't know everything about why this diet is effective for seizure control, they do know that eating mostly fat causes the body to fuel on ketones rather than glucose, which ultimately lowers insulin levels. This can have an anti-inflammatory effect on the body and may prevent seizures by calming the brain, said Glick.

One study by researchers at Dana-Farber Cancer Institute and Harvard Medical School found that a child's ability to stave off seizures is tied to a protein that affects metabolism in the brain. The protein, called BCL-2-associated Agonist of Cell Death, or BAD, also regulates metabolism of glucose. The researchers discovered that by modifying this, they switched metabolism in brain cells from glucose to ketone bodies, which are fat byproducts.

Glick said the diet plan didn't work for Jackson until he tried the most strict version, which was a 4 to 1 ratio of fat to protein and carbohydrates. Each day, he ate approximately 160 grams of fat, 8 to 10 grams of carbohydrates and 30 grams of protein, all of which amounted to about 1,700 calories a day.

Four months into the program, Jackson was seizure-free. He remained on the strict diet for two years with no return of seizures. His mother prepared foods from special recipes such as "keto" pizza made with a macadamia nut crust or chicken nuggets with coconut flour.

Over the summer -- after receiving a green light from his doctors -- Jackson, now 10 years old, began to wean himself off the diet, and his mother has slowly introduced foods such as breads and ice cream. He has maintained seizure-free and takes very little anti-seizure medication.

Research has found that for pediatric patients the anti-seizure effects of the diet often continue long after the child stops following the food plan, though the reason why remains unclear. This is typically not the case for adults, who may need to stay on the diet for life in order to control seizures.

"We've probably seen more kids go on the diets than adults, and adults are really set on their eating patterns," said Glick, adding that social obligations can make the diet difficult to fit into a grown person's lifestyle.

Jackson's mother said his doctors are hopeful that in the near future he may no longer need medication -- or a keto diet -- to stay seizure-free. "I think it's taught him a very important lesson about how food is as important as medicine, and how food affects the chemistry of your body," she said.

Source: www.cbsnews.com and http://www.dana-farber.org/

Topics: health, healthcare, health care, medication, children, diet, medical, food, seizures, Epilepsy

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