More families choose medical marijuana to help kids' severe conditions

Mackenzie Wardrope once was hesitant about the idea of children using medical marijuana.

But then the Abington, Maryland, resident's daughter Adelaide had her first seizure at 6 weeks old. Adelaide can experience a dozen seizures a day, and has been hospitalized in intensive care for months at a time.

"We were willing to do anything to help her," Wardrope said. A year ago, her mother agreed to try medical marijuana for Addy. The oil, which arrives by mail, has an olive oil flavor — although it doesn't smell at all like that.

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As Delaware and other states legalize medical marijuana, increasing numbers of families like the Wardropes believe it can help their children, most of whom have rare and serious health conditions. But some in the medical community are not sold on the efficacy of medical marijuana on pediatric patients.

The American Academy of Pediatrics said in 2015 that it opposes legalizing marijuana for recreational or medical use. The organization does make exceptions for compassionate use among children with debilitating diseases. 

The organization said little research has been conducted on medical marijuana for adults, and even less so for children. There's also concerns regarding purity, dosing and formulation. 

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Only in June did the U.S. Food and Drug Administration approve Epidiolex, a new medical marijuana drug, for the treatment of severe seizures in rare forms of epilepsy such as Addy's. 

For the past year, Addy has received two doses under her tongue every day, one in the morning and one in the afternoon. Wardrope said she's noticed positive developments in her daughter, such as her daughter maintaining better eye contact.

"It was very scary for us to not know how it was going to affect her," Wardrope said. "When we decided to add the oil, the worse thing we thought is that it's not going to work."

The number of Delaware children receiving medical marijuana is steadily climbing. The state issued seven medical marijuana cards in fiscal year 2016, which increased to 13 the following year. So far in 2018, 23 cards have been issued, state records show. 

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Even in the last year, parents are much more open to trying medical marijuana for their children, said Dr. Stephen Falchek, neurologist at Nemours/A.I duPont Hospital for Children. Addy is one of his patients. 

"These things become a part of the evening news and they're more aware of it, they're more likely to do some reading about it and ask their neurologist about it," he said. 

In order for a Delaware child to be issued a medical marijuana card, both parents and a Delaware physician need to provide consent.

Falchek said physicians do not prescribe medical marijuana and don't suggest it unless conventional treatment seems to be ineffective or intolerable. 

The physician approving the card has to be a pediatric neurologist, gastroenterologist, oncologist or palliative care specialist. 

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Only a handful of conditions qualify. The child must have intractable epilepsy or have a debilitating disease in which they experience the following symptoms: cachexia —which can consist of weight loss and muscle atrophy; intractable nausea; severe muscle spasms; and autism with self-injurious or aggressive behavior. 

Children can only use medical marijuana oil products. Many, like Addy, are given the cannabis compound Cannabidiol (known as CBD) which does not make users feel high. 

Yet physicians don't fully understand the "mechanism of action of CBD," Falchek said.

There have been several attempts by researchers to prove its efficacy, but it's often done in the form of an open trial where a placebo is not involved. Falchek said many in the medical community feel these studies weren't at the highest scientific level. 

In May, the New England Journal of Medicine published two controlled studies that found a statistically significant improvement in seizure control for two epilepsy syndromes. 

One of the conditions shown to be positively affected by CBD is Dravet syndrome, a condition very similar to Addy's, Falchek said. The disease starts affecting people within their first year of life and includes prolonged and frequent seizures and behavioral and developmental delays. 

Since taking CDB oil last summer, Wardrope said she's found Addy, who is nonverbal, to be more aware and motivated.

Falchek admits he hasn't see a "great improvement" in the number of seizures Addy experiences.

But she hasn't been hospitalized in a couple of months and has decreased her reliance on "rescue medications," which her parents use in extreme cases to alleviate seizures, he said.  

The doctor can't say if Wardrope's observations of Addy being more aware and interactive stem from CBD's ability to help seizure control or another effect. 

"It might be both," Falchek said. 

Nancy Lemus, of New Castle, believes doctors who don't think medical marijuana can help some of their patients "are failing their mission to help people." She credits medical marijuana to helping save her 12-year-old son's life.

Christopher has Dystonia, a condition in which muscles involuntary contract. Lemus described it as having charley horses all over your body. 

Christopher began using CBD oil in 2009 when he was receiving palliative care treatment. At the time, Christopher was on heavy medication which resulted in him being "basically comatose," his mother said. 

But since using CBD oil, Christopher is now back in school and gets around independently in his motorized wheelchair. He will turn 13 in September — a milestone Nemus wasn't sure he would be able to celebrate.

The two will be going on a cruise in the coming months. 

"To see him thriving, going to school, going on field trips and going to Mexico? We would have never have done that," Lemus said of life before CBD.

"This child would have died at the age of 9."   

Contact Meredith Newman at (302) 324-2386 or mnewman@delawareonline.com and on Twitter @MereNewman.