Therapeutic cannabis and autism: “I’m getting my boy back,” says mom
But around 17 months, things started to change. He stopped talking. He started plugging his ears and banging his head on the ground like something was bothering him.
Fouquette remembers his mother telling him, “I think we need to get him tested. Something’s definitely going on there.”
Five months later, in 2012, Ezra was diagnosed with autism spectrum disorder.
“It’s devastating,” she told CNN chief medical correspondent Dr Sanjay Gupta. “I’ve heard people compare it to losing a child. You lose the idea of the child you were going to have, the life you were going to have, the life that you were going to have.”
Autism is a neurodevelopmental disorder that affects 1 in 44 children in the United States, according to the CDC. It starts early in life and the main symptoms are social and communication problems as well as repetitive behaviors and rigidity.
“They can talk very well, but they can’t hold a conversation. Then you have the opposite end of the spectrum, where you have kids and adults who are entirely non-verbal,” said neurologist Dr Doris Trauner. pediatric and distinguished. professor of neuroscience and pediatrics at the University of California at San Diego.
“They have a certain routine. They like to do things over and over again,” she told Gupta. “They have repetitive behaviors, the most typical of which are things like clapping their hands or going around in circles.”
But autism can also lead to more troubling issues like severe disruptive behavior and self-harm.
“Aggressive and self-injurious behaviors are unfortunately very common, especially in children with severe autism,” Trauner said. “To bang your head repeatedly against a wall, to hit your head with your hands, to pinch or bite your hands. “
Behavior therapy, occupational therapy, and speech therapy can help, but there is no U.S. Food and Drug Administration approved treatment for the main symptoms of autism.
There are two FDA-approved antipsychotic drugs used to treat bipolar disorder and schizophrenia that are approved to treat children with autism, but only if they have severe aggression or self-harm.
“These drugs are effective for these symptoms but are unfortunately associated with significant side effects,” said Dr. Eric Hollander, director of the Autism and Obsessive-Compulsive Spectrum program at Montefiore Health System in New York City. “It can predispose them to developing things like diabetes or cardiovascular-type problems.”
“There is a significant need to develop new treatments, both to treat the main symptoms of autism… and to reduce the burden of side effects,” he added.
Regarding his son Ezra, Fouquette has tried everything to help him.
“We tried gluten-free, casein-free, dairy-free. We tried homeopathic remedies. We tried all available therapies,” she told Gupta.
But she didn’t want to give him any psychotropic drugs when he started to get more aggressive.
“I didn’t want to try any of them just because there were so many side effects,” she said. “But at one point I got a lot of bruises because he was getting more and more violent.”
Fouquette was desperate for help. It was around this time that she saw an article on the local news about a clinical trial involving children with autism and CBD, the non-psychoactive part of the cannabis plant, at UC’s Center for Medicinal Cannabis Research. -San Diego.
“He was 9 years old at the time,” she said. “What am I going to do in the future as he continues to grow if I’m already struggling with his aggression now?” “
Fouquette did not hesitate to try medical cannabis for his son.
“I have seen CBD used for children with epilepsy,” she said. “I saw how much it helped other people, and I was like, ‘This is just natural. There might not be any real side effects. Why not try it. ? ‘ “
So she enrolled Ezra in the clinical trial.
Medical cannabis, autism and the brain
Trauner is the principal investigator of the UCSD trial, a double-blind, placebo-controlled crossover study, which means participants don’t know when they are getting the placebo or the drug, and neither do doctors. Researchers are examining how CBD could affect the brains of children with autism.
“We know that in autism there are differences in the chemistry of the brain. There are changes in the neurotransmitter systems, both in the dopaminergic system and in the serotonergic system, which may contribute to some of the symptoms. “she told Gupta.
Serotonin and dopamine are neurotransmitters that carry signals, or information, from one nerve cell to another. Serotonin is thought to regulate mood and have a strong effect on early brain development. Dopamine can reinforce behavior when we receive a reward.
Several studies have shown that too low or too high dopamine levels in autistic children can cause certain areas of the brain to malfunction, resulting in high levels of repetitive behaviors and reduced levels of social interaction, Trauner said.
In animal models studying autism, levels of serotonin in the brain may be lower than expected, and the addition of serotonin improves social functioning in mice, she said.
“And CBD, among other things, has effects on the serotonergic system by increasing the availability of serotonin,” she added. “And that can help in terms of social interactions in particular.”
Across the country in New York City, a similar trial, involving children and adolescents with autism and the cannabinoid cannabidivarin (CBDV), is also underway at the Montefiore Health System.
“We know that autism is a developmental disorder that begins early in brain formation,” said Hollander, the principal investigator of this double-blind, placebo-controlled study.
“I think CBDV can play an important role in autism,” he said. “It can decrease arousal in neurons and increase inhibition.”
When children with autism are overly aroused or don’t have enough inhibition, it can lead to explosive behaviors, temper tantrums, rage or self-harm, and they can display repetitive behaviors, Hollander said. .
“So this changes the excitation / inhibition ratio in different neurons,” he said.
Although the two studies are still in progress and the blinds have not been crossed, the initial feedback has been positive.
“Some of the patients had a really substantial benefit,” Hollander said. “We saw what we were hoping for, which was a significant decrease in symptoms of irritability, temper tantrums or explosive episodes. We also had patients who saw their repetitive behaviors improve.”
In California, similar reports have come from parents.
“We’re seeing some pretty impressive changes,” Trauner said. “The kids whose aggressive behavior was everyday, here we go. I mean, gone.… The kids whose self-injuring behavior is better, and they’re at the point where the calluses on their wrists are starting to heal,” he said. she declared. noted. “A lot of children are more social.”
But Trauner warns that more research needs to be done.
“It’s too early to be excited about it. I think there is reason to hope, but it’s not a good idea to run around and buy it and try to use it for yourself. – even, ”she said.
“There are several reasons for this. One is that it can be toxic. It can cause liver dysfunction,” she added. “It’s also not clear which dose is the best dose if it works, and if what you buy really does what you think it does, as it is unregulated.”
“I get my boy back”
During the trial, Fouquette’s son Ezra was given the placebo at one point and CBD at one point, but Fouquette and the doctors still don’t know when he received it.
Ezra was mostly nonverbal before the trial, she said. But in the first few weeks something remarkable happened.
“One day I was at the grocery store and my husband sent me a video. And it’s Ezra lying on the floor wrapped in a blanket, and he’s singing,” she said. “He had never sung before … and he sings the whole song.”
Fouquette told Gupta what was going through his mind at the time. “I’m getting my baby back. I’m getting my boy back,” she said, fighting back tears.
“I am able to communicate with him. He talks to me. He is happy. He is no longer aggressive. He sings,” she said. ” What more ? “
Since Ezra completed the study a year ago, he hasn’t shown any aggression and has continued to communicate.
“He hasn’t had any regression at all,” she said. “It helped him… whatever was going on in his brain, to make the connections he needed to make. And once those connections were made, he never lost them.”
It is not known what role the treatment may have played in Ezra’s progress. The study was not published and did not investigate whether cannabis or CBD might be neuroregenerative for the brain. More research is needed in this region.
“Some of the kids who have shown an effect… are showing it for several weeks after withdrawal from the study drug. And some seem to maintain some improvement,” Trauner said. “But I don’t know why that would be.”
No matter why it happened for Ezra, who is now 11, Fouquette is grateful.
“I don’t think it’s a cure. It gave her the ability to speak. It gave her the ability to communicate more. I think that’s why the assault went away,” she said. . “It’s just going to make it easier for him – easier for him to live with, easier for him to be himself.”