The New Orleans Times-Picayune
By Maria Clark
April 25, 2018
A car ride anywhere with Denise Young’s 16-year-old son Seth can be extremely dangerous.
Seth was diagnosed as a young child as having low-functioning autism, a severe form of the disorder that makes him hypersensitive to sound and light and which can trigger tantrum-like meltdowns.
“They call it a rage,” Young said. “He has thrown punches in the back of my seat, the back of my head (while driving).”
Medication hasn’t worked, according to Young. One prescription only made Seth’s rages worse, she said. Another one caused excessive thirst and hormonal imbalances.
“He is non-verbal, which makes him very frustrated. He can’t communicate how his medication is affecting him so we can only read how he is feeling through his behavior,” Young said. “It’s an emotional rollercoaster and it’s not his fault.”
|State Representative Rodney Lyons|
So, like many Louisiana parents raising children with severe autism, Young is tracking a bill in the state legislature authored by Rep. Rodney Lyons that would allow licensed doctors to recommend medicinal marijuana in cases of severe autism, once the state’s nine dispensaries open later this year.
The medicine would be recommended to patients who exhibit extreme behavior associated with autism, including self-injuries, physical aggression and repetitive or self-stimulatory behavior.
Advocates for medical marijuana believe a compound in the plant called tetrahydrocannabinol (THC), which has shown benefits treating seizures, gastrointestinal disorders and metabolic conditions, could be used to treat similar symptoms in children with severe autism.
Autism spectrum disorder affects about 1 percent of children around the world. The Centers for Disease Control and Prevention estimates that one in 68 children in the U.S. has been identified as having ASD.
If the bill is approved, autism would be added to a list of conditions that can be legally treated with medical marijuana in Louisiana. Others include the gastrointestinal condition Crohn’s Disease, pain associated with HIV/AIDS, seizures, and muscular dystrophy.
There is a caveat: Children with autism under the age of 18 could only be recommended medical marijuana by a pediatric subspecialist, like a pediatric neurologist or a pediatric psychiatrist. The specialist would need a permit to prescribe medical marijuana. Only eight doctors in Louisiana have gotten permits to do so. Only one of them is a pediatrician.
|Bodi and Ramsey Castleberry (courtesy photo)|
Bodi has high-functioning autism but has extreme anxiety and difficulty interacting with other children. Ramsey is a non-verbal sensory seeker, constantly on the lookout for extreme forms of excitement. Ramsey has climbed to the roof of the family’s home. There were the times he has jumped into Lake Pontchartrain.
Castleberry has to be constantly vigilant to make sure he doesn’t try to eat non-food items. The condition disrupts his sleep, his moods and even his digestion.
“I think medical marijuana would make his quality of life better. I’m not of the mind his autism will be stopped in its track, but he won’t suffer from a nervous system that is constantly on fire,” she said.
If she has to wait 13 months to see a pediatric subspecialist in New Orleans, she wonders what families in smaller towns around the state are going to do.
“What are people in Shreveport, Monroe, Alexandria going to do?” she said. “Not only do we have this mountain to climb to convince people that this is a safe science, this provision could mean that hundreds of families will be left out of care.”
|A selfie taken by Kristopher Williams|
Williams has looked for a pediatric autism specialist and said the nearest doctor is a three-hour drive from home.
Kristopher was diagnosed as having high-functioning autism as a toddler. At the time he was non-verbal.
“He can speak now at about a three-year-old level. He has come a long way,” said Williams, but has problems controlling his anger, for which he is prescribed blood pressure medication. The medicine, however, acts as a blood thinner which can slow his breathing, which is particularly dangerous while he’s sleeping.
“Most of the time, I stay awake making sure he’s OK,” Williams said. “We really are hoping to at least be able to try a natural option for my son.”
|Photo by Ted Jackson, NOLA.com | The Times-Picayune|
Louisiana’s chapter of the American Academy of Pediatrics petitioned for the requirement that parents see a pediatric subspecialist to access medical marijuana for children who suffer from severe autism. The original language of the bill did not include the requirement.
The organization came out in opposition to the bill’s original version in late March, arguing that there isn’t enough data to support the effectiveness or safety of using medical marijuana to treat children with autism.
“Requiring a subspecialist shouldn’t be an obstacle to care. It is a safety measure to protect our children from inappropriate access to medication,” said Dr. John Vanchiere, the director of Children’s Clinical Research Center with LSU Health in Shreveport.
He added that the association is concerned that, without this requirement in place, people might be tempted to overprescribe even to manage minor symptoms associated with autism.
|Photo by Kathy Young|
Medical research into the benefits of medical marijuana to treat autism is limited in the United States, because the plant is classified as a Schedule I drug along with other illicit substances such as heroin. This classification makes it difficult for researchers to study marijuana as a medicine.
The Philadelphia Inquirer reported in January that Children’s Hospital of Philadelphia will be the first of its kind in the U.S. to look at the benefits of the plant’s compounds in children with autism.
Another major study is currently being conducted at the Shaare Zedek Medical Center in Jerusalem. Israel was one of the first countries in the world to permit the use of medical marijuana, in 1992, and is one of three countries with a government-sponsored medical marijuana program. Canada and the Netherlands have similar programs.
Dr. Adi Aran, a pediatric neurologist based at the Shaare Zedek Medical Center, is leading the study, which involves 120 children and young adults ages 5 to 29. Aran has cautioned against cannabis as a treatment of autism, but has said many children have shown significant improvements. Some no longer hurt themselves, or throw tantrums, he said.
Vancherie said that studies have been conducted and data is available that show medical marijuana can be effective in controlling certain seizure syndromes in children.
“We are looking at balancing risk with benefit. I understand the agony and frustration of parents looking for anything to benefit their child. But we don’t have the data to know for sure whether this will be helpful or harmful,” Vancherie said.