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Medical marijuana and autism: Mom says ‘I’m going to bring my son back’

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Watch CNN’s Chief Medical Correspondent Dr. Sanjay Gupta’s special “Herbs 6: Marijuana and Autism” on Sunday, December 19 at 8 p.m. ET.

But about 17 months ago, things started to change. stop talking. He started to cover his ears and hit his head on the ground as if something was bothering him.

Phuket remembers her mother telling her, “I think we need to test it. There’s definitely something going on there.”

Five months later, in 2012, Ezra was diagnosed with autism spectrum disorder.

“It’s devastating,” she told CNN chief medical correspondents Dr. Sanjay Gupta. “I’ve heard people compare it to losing a child. You’ve lost the idea of ​​the child you were going to live, the life you were going to live, the life you were going to live.”

Ezra Phuket was diagnosed with autism when he was 22 months old.

Autism is a neurodevelopmental disorder that affects 1 in 44 children in the United States, according to the CDC. Starting early in life, the primary symptoms are social and communication issues as well as repetitive behaviors and rigidity.

“They may talk well, but they can’t carry on the conversation. Then you have the other end of the spectrum, where you have children and adults who don’t quite speak,” said Dr. Doris Troner, a pediatric neurologist and educator. Professor of Neurosciences and Pediatrics at the University of California, San Diego.

“They have a certain routine,” she told Gupta. “They like to do things over and over again.” “They have repetitive behaviors, the most common of which are things like hand flapping or spinning in circles.”

But autism can also lead to more annoying problems such as severe disruptive behavior and self-harm.

“Aggressive behavior and self-harm are unfortunately very common, especially in children with severe autism,” Troner said. “Anything from repeatedly hitting their heads against the wall to hitting their heads with their hands to pinching themselves or biting their hands.”

Behavioral therapy, occupational therapy, and speech therapy can help, but there are no FDA-approved treatments for core symptoms of autism.

There are two FDA-approved antipsychotics, used to treat bipolar disorder and schizophrenia, that are approved to treat children with autism, but only if they display severe aggression or self-injury.

“These medications are effective for these symptoms, but unfortunately they are associated with significant side effects,” said Dr. Eric Hollander, director of the Autism Spectrum and OCD Program at Montefiore Health System in New York. “It could predispose them to developing things like diabetes or cardiovascular disease.”

“There is an important need to develop new treatments, to address the core symptoms of autism…and to reduce the burden of side effects,” he added.

Searching for answers

When it came to her son Ezra, Phuket tried everything she could think of to help him.

“We’ve tried gluten-free, casein-free and dairy-free,” she told Gupta. “We’ve tried homeopathic remedies. We’ve tried every remedy out there.”

But she did not want to give him psychotropic substances when he began to become more aggressive.

“I didn’t want to try any of those just because there were so many side effects,” she said. “But, at one point, I had a lot of bruising because it was getting violent.”

Fouquette was desperate for help. That’s when I saw a story in the local news about a clinical trial involving children with autism and CBD, the non-psychoactive part of the cannabis plant, at the University of California, San Diego Medical Cannabis Research Center.

“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 am already having a hard time with his aggressiveness now?”

Phuket did not hesitate when it came to trying medicinal cannabis for her son.

“I’ve seen CBD used for children with epilepsy,” she said. “I saw how much I helped others, and I thought, ‘It’s all normal. There may not be any real side effects with it. Why don’t you experience it? “”

So I registered Ezra in the clinical trial.

Medical cannabis, autism and the brain

Trauner is the principal investigator for the UCSD trial, a placebo-controlled, double-blind crossover study, which means participants don’t know when to receive a placebo or medication, and neither do doctors. Researchers are studying how CBD may affect the brains of children with autism.

“We know that in autism, there are some differences in brain chemistry. There are some changes in the neurotransmitter systems, in both the dopamine system and the serotonin system, that may contribute to some of the symptoms,” she told Gupta.

Serotonin and dopamine are two neurotransmitters that carry signals or information from one neuron to another. Serotonin is thought to regulate mood and have a significant impact on early brain development. Dopamine can enhance behavior when we receive a reward.

Several studies have shown that too low or too high levels of dopamine in children with autism can cause dysfunction in certain areas of the brain, leading to high levels of repetitive behaviors and low levels of social interaction, Trauner said.

She said that in animal models studying autism, serotonin levels in the brain may be lower than expected, and adding serotonin improves social functioning in mice.

“And CBD, among many other things, has effects on the serotonin system while increasing the availability of serotonin,” she added. This can be especially useful for social interactions. ”

Across the country in New York, a similar trial, involving children and adolescents with autism and cannabis cannabinoids (CBDV), is also underway in Montefiore’s Health System.

“We know that autism is a developmental disorder that begins early with the formation of the brain,” said Hollander, the principal investigator of this double-blind, placebo-controlled study.

“I think CBD could play an important role in autism,” he said. “It can reduce excitation in neurons and increase inhibition.”

Hollander said that when children with autism are too excited or don’t have enough inhibition, it can lead to explosive behaviors, tantrums, anger or self-harm, and they can display repetitive behaviors.

“So it changes the ratio of excitation to inhibition in different neurons,” he said.

Ezra's mother, Joanne Phuket, said she believed her son's aggressive behavior stemmed from his inability to communicate his needs because he was mostly nonverbal.

While both studies are still ongoing and the curtains have not been broken, early reactions have been positive.

“It’s been a really big benefit for some patients,” Hollander said. “We saw what we were hoping for, which was a significant reduction in symptoms of irritability, tantrums or outbursts. We have patients who have improved in their repetitive behaviors as well.”

In California, similar reports were received from parents.

“We’re seeing some pretty impressive changes,” Trauner said. “Kids whose aggressive behavior was daily, it went away. I mean, it went. … Kids whose self-injurious behavior is better, and they get to the point where their wrist screws are starting to heal,” he said. “Many children are more social.”

But Trauner cautions that more research is needed.

“It’s too early to get excited about it,” she said. “I think there’s reason to be hopeful, but it’s not a good idea to run out and buy it and try to use it yourself.”

“There are several reasons for this. One of them is that it can be toxic and can cause liver dysfunction,” she added. “It’s also not clear what dose is best if it works, and whether what you buy really contains what you think it does, because it’s unregulated.”

“I will bring my son back”

During the trial, Fouquette’s son Ezra received a placebo at one point and CBD at one point, but Fouquette and the doctors still don’t know when he was getting it.

She said Ezra was mostly nonverbal while going to trial. But in the first few weeks, something wonderful happened.

She said, “One day, I was at the grocery store, and my husband sent me a video. Ezra was lying on the floor wrapped in a blanket, singing.” “He’s never sung before… and he sings the whole song.”

Phuket told Gupta what was on her mind at the time. “I’m going back my baby. I’m going back my son,” she said, fighting back tears.

“I’m able to relate to him. He talks to me. He’s happy. He’s not aggressive anymore. He sings,” she said. “What more could I ask for?”

Since Ezra finished school a year ago, he has not shown any aggression and has continued to communicate.

“He has not seen any regression at all,” she said. “It helped him…whatever was going on in his brain, to make those connections he needed to make. Once those connections were made, he never lost them.”

It is not clear what role the therapy may have played in Ezra’s progress. The study wasn’t published, and it didn’t look at whether cannabis or cannabidiol could be a neurotransmitter to the brain. More research is required in this area.

“Some of the children who did show an effect … showed it for several weeks after the study drug was taken away. And some seem to maintain some improvement,” Troner said. “But I don’t know why that would be.”

No matter why this happened to Ezra, who is now 11 years old, Phuket is grateful.

“I don’t think it’s a cure,” she said. “It gave him the ability to talk. It gave him the ability to communicate more. I think that’s why the aggression persists.” “It would make it easier for him – easier for him to live, easier for him to be himself.”

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