Alabama parents say newly legal cannabis oil helping children

Four-year-old Gabriel Pass surprises his mother every day now that he's gotten relief from frequent seizures.

Ethan Goodridge, 17, is having fewer seizures and is laughing and talking more, his mother says.





Gabriel and Ethan, so far at least, are two of the success stories resulting from a new Alabama law that allows the use of cannabidiol, or CBD oil, to treat debilitating medical conditions. CBD oil is derived from the marijuana plant.

Leni's Law took effect June 1. It's named for Leni Young, 4.



The Young family moved from Alabama to Oregon last year so that Leni could use CBD oil to treat her seizure disorder.

Leni's mother, Amy Young, said Leni has gone from having hundreds of seizures a day to a total of six since September. Leni began taking CBD oil in August, Young said.

"Leni is great," Young said. "She is spectacular. She is using her body more and more and doing new things every day."

Leni's Law was an expansion of Carly's Law, which passed in 2014 and authorized a study at the University of Alabama in Birmingham on the use of CBD oil to treat seizure disorders.

Carly's Law was named after Carly Chandler, whose parents joined other families in a persistent lobbying effort at the Alabama State House, an effort that was repeated with Leni's Law.

Early results from the Carly's Law study, released by UAB in March, show promise.

Fifty percent of the 51 subjects saw sustained improvement in seizure control, with declines in seizures ranging from 32 percent to 45 percent.





Bob Shepard, a spokesman for UAB, said the study now has 95 participants. He said UAB has submitted abstracts to the American Epilepsy Society, and information about those that are accepted will be released later.

Amy Young has already seen the evidence she needs.

Leni Young and Wayne Young.jpgLeni Young and her father, Wayne Young. Leni's seizure disorder has improved dramatically since the family moved from Alabama to Oregon last year and she began receiving CBD oil.
"Leni is proof enough for me," Young said. "I understand that other people need to have a lot more documentation."

With Leni's Law on the books, Young is hearing from families in Alabama who can try CBD oil without moving.

Robin Pass and her husband Frank adopted Gabriel in 2013, a year after taking him in as foster parents. They live in Prattville.

Gabriel has schizencephaly, a condition marked by clefts in his brain. He's blind and uses a wheelchair.
Despite his condition, Gabriel showed progress as an infant, rolling over, babbling, eating from a spoon. Robin Pass said they knew to expect development delays. They also knew seizures were likely.

The seizures started when Gabriel was 11 months old and came relentlessly, 10 to 20 a day, Pass said.
Pass said the seizures, called tonic seizures, stiffen Gabriel's muscles. When they subside after 30 to 45 seconds, Gabriel usually vomits.





"It wipes him out," she said. "It totally disrupts everything that his brain was doing."

"You can see how you would not be able to learn anything at all. You're constantly being interrupted by that electrical mishap in your brain."

Pass said the seizures took away Gabriel's smile, babble and laughter. He regressed to using a bottle and mostly just slept.

Pass, an interpreter for the deaf, and her husband Frank, a missionary, were not about to give up. One possible source of help for Gabriel was CBD oil.

Pass said what she learned from research and networking with other parents had her well prepared when Leni's Law passed.

"As a parent you do what you have to do and you figure out how to do it," Pass said. "You become a cannabis expert, for goodness sake."

Gabriel Pass and Robin Pass 2.jpgRobin Pass with her son, Gabriel. Pass tracks the frequency of Gabriel's seizures with a rolling, seven-day average. The most recent average is 1.7 seizures a day, a drastic drop from 10 to 20.
Gabriel has been able to stop taking two anti-seizure medications, drugs which made him sleep excessively, Pass said.

She hopes he can eventually stop taking two others he still receives.

In the meantime, Gabriel is moving, using his voice, eating from a spoon again and trying to take steps when he's held upright.

Twitching that affected Gabriel between seizures, which Pass said are called myoclonic jerks, have stopped, she said.

She said Gabriel is more interested in doing things with his three older sisters.

"My daughters are reading him books again because he actually cares," Pass said.

"I feel like I have my son back. I also feel like there's hope that it's going to get better."

Pass said Gabriel's neurologist knows about Gabriel's CBD oil therapy and is supportive.

Gabriel's most recent electroencephalogram showed significantly calmer brain activity, she said, an indication that Gabriel can better organize his thoughts and learn.

Doctors can't prescribe CBD oil. Marijuana is still a Schedule I drug under federal law, the same classification as heroin and LSD.

The Medical Association of the State of Alabama opposed Leni's Law.





The association issued a statement in March that noted the importance of strict controls in the UAB study and contrasted that with Leni's Law. It read, in part:"The practice of medicine is evidence-based whereby the treatments and procedures we use are extensively researched and tested to make certain they are as safe as possible for the patients under our care."

"Given these bedrocks of the medical profession, the Medical Association cannot support the expansion or legalization, whether by legislation or ballot initiative, of marijuana or marijuana products in any form that have not received the same FDA approval as other medicinal compounds."

The legislator who sponsored Leni's Law, state Rep. Mike Ball, R-Madison, is a former state trooper and former agent for the Alabama Bureau of Investigation.

Ball said he's hearing from many people with positive results since the law took effect, and he trusts what they're telling him.

"These are honorable, credible witnesses," Ball said. "They are not people that want to abuse drugs and get high. These are people that are desperate for help."

Leni's Law provides "an affirmative and complete defense" from prosecution for marijuana possession for the use of CBD oil for a "debilitating medical condition."

Leni's Law allows CBD oil with THC levels of up to 3 percent. THC is a psychoactive substance in marijuana that produces the high sought by pot smokers.

Ball said it would be impractical for anyone to use CBD oil to get high because of the amount they would have to consume and the cost.

Lori Quiller, communications director for the Medical Association, said its position has not changed.
"We don't back anything that's not FDA approved," Quiller said. "We are happy that you found some folks that the treatment is working for."

"It boils down to evidence-based findings, and it's just not there yet."

Robin Pass said it's important to understand that using CBD oil requires a methodical, careful approach. That includes sharing information with other families about what they're doing and their results.

"It's trial and error and talking to people that you trust," Robin said.

Ethan Goodridge.jpgEthan Goodridge with his mother, Brandi Goodridge of Henagar. Ethan is happier, talking more and having fewer seizures since he began receiving CBD oil, according to his mother.
Brandi Goodridge of Henagar said her son, Ethan, is autistic and has an extra Y chromosome.

Ethan can go for about two months without a seizure, Goodridge said. When he becomes quiet and moody, she said she knows the seizures are coming.

When they do, they strike for a week or more, every day or every other day, as many as about 20 to 70 during those periods, she said.

Ethan was in a seizure-free period when he started receiving the CBD oil a month and a half ago, Goodridge said, but she was seeing the signs that seizures were coming.

Two weeks after beginning the CBD oil, Ethan had four seizures. That was on a Saturday. He didn't have another until the next Saturday, when he had three, Goodridge said.

Ethan is happier, talking more and doing more with his family, his mother said. He's a good big brother to his little brother and sister. Ethan's vocabulary is limited but he is saying new words, Goodridge said.

For example, one of his favorite rituals is a trip to McDonald's for a chicken taco, which he called a "tar tar." Now he's saying "taco," his mother said.

Goodridge, one of the parents who lobbied at the State House, said she put in four years of research on CBD oil.

"By the time it became legal, I knew what I needed to know," she said.

She plans to adjust Ethan's dosage until she finds "the sweet spot."

One of her long-term goals is to allow Ethan to stop taking anti-seizure medications, which she said are hard on his body.

For now, she takes delight in his improvement. Ethan is not much for hugs, she said, but wrapped his arms around her and gave her one recently.

"I'm counting everything we get a miracle," she said. "And that hug I got was a miracle."

Amy Young hears the good news from Goodridge and other families in Alabama. She wants to see more changes in laws and more opportunities for research.

"It is ridiculous that access to medication is determined by people's zip codes," Young said.

Leni's seizures started when she was eight months old, Young said. They were caused by brain damage from a stroke Leni suffered before birth.

Doctors showed little hope after the seizures started, suggesting at one point it was time to call hospice, Young said.

Drugs would slow the seizures down enough for Leni to survive but left her still and silent, Young said.
The family decided to move to Oregon after Leni was excluded from participation in the Carly's Law study, Young said.

Leni's CBD oil comes from a personal grower and is tailored for her needs, a process called individual cannabinoid therapy.

There was some trial and error, Young said, but the results have been dramatic.

With the seizures mostly stopped, Leni is starting to talk, using her arms and hands more and has a sharper eye gaze.

She uses a special computer that tracks eye movement and helps her communicate.

She is off one of three anti-seizure medicines and is receiving lower doses of the other two.

Her improvement is changing how the family spends its time, Young said.

For example, they recently took Leni on a hiking trip to Mount Hood.

"We never used to leave the house," Young said.
 
Leni enjoyed visiting the orchards and fruit stands on the trip, her mother said.

"We had no idea that we would finally get to meet the sassy little girl that she is," Young said. "Every day there is something new."

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