Nothing seemed to help. Then they tried CBD.
Rachel Anderson had hit a breaking point. Her son was diagnosed with a rare form of epilepsy called Lennox-Gastaut syndrome at age 4. Then when he was 6, he got diagnosed with autism spectrum disorder (ASD).
“We had tried six or seven pharmaceutical drugs,” she told Healthline, explaining their attempts to get his seizures under control. “None of them worked, or if they did, they had serious side effects that made life miserable for all of us.”
Those side effects included intense rages. “He would attack me, my husband, his brother, who was only 4 at the time. And he’s a big kid. When he was 6, he weighed 100 pounds.”
Deanna Weatherman can relate. Her son also has epilepsy and is on the ASD spectrum. They too had tried numerous medications, only to be left feeling underwhelmed and frustrated by the results.
She told Healthline, “He has extreme hyperactivity. He can’t sit still at all. He runs through the house and at school. There’s just nonstop movement all day. He can’t slow down. Not even to complete a full sentence.”
Both families felt they’d tried everything medically available to them to help their sons and still weren’t seeing results.
So, when the Weatherman’s son was 7 and the Anderson’s was 8, they decided to try something else: CBD.
And both families say it’s made a significant difference helping manage their kids’ conditions.
Otherwise known as cannabidiol, CBD is just one of the more than 100 identified cannabinoids in cannabis plants. But most people tend to talk only about THC or CBD.
While THC is considered the psychoactive component of marijuana, CBD doesn’t have those same psychoactive effects.
“But it might be thought to have neurological effects,” Dr. Katharine Zuckerman, associate professor of pediatrics at Oregon Health & Science University’s School of Medicine, told Healthline. And many CBD oils contain at least some THC, as it’s believed the two often work best together.
The oil the Anderson family uses, Charlotte’s Web, does have a small amount of THC in it.
The Weathermans, on the other hand, have opted for a THC-free option for their son.
Like the Andersons and Weathermans, several families are turning to CBD to help their kids manage health conditions.
A recent report released in Remedy Review found that of 547 parents of children with ASD surveyed, 40.4 percent had given their children CBD.
These parents claimed it helped with impulsivity and short attention spans, hyperactivity, aggression, difficulty sleeping, and other symptoms associated with ASD.
For Anderson, deciding to use CBD was mostly about helping with her son’s seizures.
Anderson is thankful to report her son does seem to have fewer seizures after he takes a CBD dose. And on days when he seems to be having more seizures than usual, she doesn’t hesitate to give him an extra dose.
But epilepsy is in children with ASD.
Since she began giving her son CBD, Anderson says she also noticed a reduction in his ASD symptoms.
“My son is horribly anxious, but when we give him his CBD, he’s cool as a cucumber. Usually within an hour, and that’s the long end of it.”
Weatherman has noticed CBD use has also had a similar effect on her son’s symptoms.
“He can calm quicker in the morning while we wait for his other meds to kick in,” she told Healthline. “And we can give him the CBD in the afternoon as an alternative to the booster.”
While she’s not looking to get her son off his regular meds completely, she likes that they can use CBD to supplement his current treatment plan and avoid additional meds in the afternoons.
Marc Lewis oversaw the research and development of the Remedy Review study and sees that as a benefit to CBD use in these cases.
“We think there is high value in decreasing a dependency on synthetic products,” he told Healthline. But he also advised, “Talk to a healthcare professional you trust. Your doctor may have access to new information.”
However, the American Academy of Pediatrics (AAP) currently draws a pretty hard line against CBD use in kids.
“The AAP opposes ‘medical marijuana’ outside the regulatory process of the U.S. Food and Drug Administration. Notwithstanding this opposition to use, the AAP recognizes that marijuana may currently be an option for cannabinoid administration for children with life-limiting or severely debilitating conditions and for whom current therapies are inadequate,” reads the organization’s policy statement on the issue.
But that statement seems to largely ignore the growing number of families who claim CBD has drastically improved their children’s ASD symptoms.
It’s not that simple, though, says Zuckerman.
She told Healthline that ultimately, we don’t know what the real risks and benefits of CBD use are for children — yet.
She explains that most of the studies we currently have about marijuana use in adolescence have to do with teenagers using the recreational drug, which tends to have a far higher THC content.
“It makes a difficult comparison, because not only is the treatment different, the age and reasons for it are different,” she explained. “But based on those studies, we do know marijuana is associated with worse education and worse life outcomes. Now, how that applies to children on the autism spectrum who are typically younger and don’t have typical development to start with, that’s kind of the outstanding question.”
For Weatherman, the answer was relatively simple.
“We had tried everything else, so we weren’t concerned with the overall risks,” she said, adding they simply wanted to find a way to help their child. So far, they’ve noticed only benefits without any downside.
Zuckerman admits to being skeptical of anyone claiming miraculous results from CBD use. While she’s had parents use CBD for autism and other conditions, she says it’s hard to tell if it makes a real difference.
“Generally, for kids with autism, they get a little better over time regardless. So you can’t always be sure if it’s because of something you did or if it would have happened anyway,” she said.
She worries that a lot of complementary therapies get popular in the ASD parenting communities for this reason. Also, because it’s easy to attribute any improvement at all to whatever is being used.
“It could be that’s what caused it, or it could have happened regardless,” she explained. “I do have patients who use it, and I can’t tell you about a single case where it worked spectacularly. I have parents who think it helped their kids, but I have parents who think a lot of things helped their kids.”
For her part, Zuckerman wants to see high-quality studies that help doctors and parents better understand if there’s a true benefit to be gained by using CBD in kids.
Until then, she wants parents to really think about what benefits they hope to see and to then talk to their child’s doctor about what they’re doing.
Zuckerman worries that parents aren’t talking to their child’s doctors for fear of being judged or getting in trouble.
“I can tell you this has become pretty widespread, and most pediatricians aren’t going to judge you. Part of the reason doctors want to know is because this is a medication and it can have side effects and interactions with other meds. And they want to keep your child safe,” she said.
Anderson has disclosed her use of CBD to her child’s entire medical team.
However, her son has a condition for which the FDA has approved CBD use. She also lives in a state where medical marijuana is legal.
For her, one of the biggest struggles is simply finding dispensaries that can ensure the product she uses will be there when her son needs it.
She knows other parents who live in different areas who may be thinking about using CBD to help manage their child’s symptoms and have additional obstacles standing in their way.
In fact, she’s planning on attending her brother’s wedding in the fall without her husband and children because she fears what may happen if they travel with her son’s medication to a state where it’s not currently legal.
Then there’s the cost. Her insurance doesn’t cover CBD, and the oil she uses costs about $150 per bottle.
“My husband and I are fortunate enough to be able to pay for this, but my neighbor across the street may not be.”
It’s a dilemma too many parents face: wanting to try something new that may help, but not having the access or ability to make that happen.
For Anderson and Weatherman, the rewards currently outweigh the risks. They say using CBD has made a positive difference helping their children manage their symptoms.
They hope by sharing their stories they can help reduce some of the stigma surrounding CBD and perhaps help other parents in similar situations realize they may have more options for treatment than they thought.