Kalel Santiago, 9, who has autism, spoke his first words shortly after starting hemp-oil treatments. (Photo: Santiago family)
Though Kalel Santiago of Puerto Rico is only 9 years old, he’s already endured some adult-level struggles. At just 10 months, he was diagnosed with the rare childhood cancer neuroblastoma, and spent more than two years undergoing surgery, chemotherapy, and radiation treatments. Then came the next diagnosis: severe, non-verbal autism.
“While he was in the hospital, we noticed he didn’t speak at all and had some behavior that wasn’t right, like hand flapping, and walking on his toes,” his father, Abiel Gomez Santiago, tells Yahoo Parenting from the family’s home in Aguada. “But we waited until he was 3 and cancer-free to look at his behavior.”
He and his wife Gladys — also parents to two older boys, now 18 and 20 — did a cram course in educating themselves on autism. They tried various schools and therapies, and eventually found impressive success with a unique surf-therapy school near their home. Then, through an April fundraising event for that program, the Santiagos happened upon a treatment that would quickly change their lives: hemp oil, rich in the compound cannabidiol (CBD), which has been shown, at least anecdotally, to dramatically ease symptoms of both epilepsy and autism.
They took home the tiny sample bottle of spray and began giving their son twice daily doses, as directed on the label, right into his mouth. And the results, they say, were startling: Kalel started talking — in just two days.
“He surprised us in school by saying the vowels, A-E-I-O-U. It was the first time ever,” Abiel says. “You can’t imagine the emotion we had, hearing Kalel’s voice for the first time. It was amazing. The teacher recorded him and sent it to my wife and me and we said well, the only different thing we have been doing is using the CBD.” Soon thereafter, he adds, Kalel started using consonants to connect his sounds. “He said, ‘amo mi mama,’ ‘I love my mom,’” Abiel says. “I don’t know how to thank [the CBD oil makers].”
Kalel with his parents, Abiel and Gladys.
But the product they are grateful for — Hemp Health, from California, which sells for $40 per ounce (almost a three-month supply) — is not without controversy. It’s just one of many CBD oils now marketed as legally attainable alternatives to the much sought-after Charlotte’s Web — the most popularized version of the oil, which is low in THC and and rich in CBD. But it’s made from specially cultivated marijuana (the cannabis flowers). And since medical marijuana is not legal in all states, especially for minors, scores of desperate families from all over the country have moved to Charlotte’s Web’s source, Colorado. In response, Hemp Health and other versions derived from industrial hemp — THC-free cannabis stalks and seeds — have popped up on the web, claiming to be cheap and legal alternatives.
But the Food and Drug Administration (FDA) would disagree. The agency maintains that such products are unregulated and therefore not proven safe, and that their sale as dietary supplements is in fact illegal. (Though enforcement of such sales, spokesperson Jeff Ventura tells Yahoo Parenting, would depend on factors including “agency resources and the threat to the public health.”) In February, the FDA sent warning letters to many CBD oil manufacturers, telling them to stop making medical claims — like being cure-alls for everything from glaucoma to Ebola — about their products.
In addition, Project CBD, a nonprofit that promotes and educates on the medical uses of CBD, is wary of hemp-derived oils. “[CBD] oils can be effective,” director Martin Lee tells Yahoo Parenting. “We would suggest, however, that anyone who is seeking such products should try to access CBD oil derived from cannabis rather than industrial hemp, which is not an optimal source for CBD.”
Still, what Abiel and Gladys saw that day in the Hemp Health sample was neither threat nor rip-off, but a tiny glimmer of hope. And so far, they say, the results have been nothing short of startling.
Kalel during surf therapy with Dr. Giovanni Martinez.
“He’s been connecting — like he’s awakening to seeing the world,” Abiel says, noting that they have kept up the treatments for just over a month now, and that Kalel continues to make improvements. “He’s looking you in your eyes, he’s been trying to say different things and imitate what we are saying. He’s saying ‘uncle,’ ‘aunt,’ the names of my two kids. It’s something amazing that I cannot explain.” (Regarding the product’s legality, the dad notes, “If we had to go somewhere else to get it, we would. I’d go anywhere.”)
Kalel’s response has shocked others, as well, including his teachers, and even the CBD oil company. “We were really amazed to hear Kalel’s progress, because what they are using is a lower-concentrate product,” Miguel Feliciano, president of Hemp Health’s Puerto Rico distributor, Antonio & Associates, tells Yahoo Parenting. He adds that word of Kalel’s progress has gotten out locally, through the surf-therapy school, Surf4Dem, and that other parents are now asking to try to product.
Kalel’s surf therapist Dr. Giovanni Martinez, a clinical psychologist who has worked with Kalel since Surf4Dem’s inception, has also been stunned by the boy’s change.
“Like his parents, I am also in shock,” he tells Yahoo Parenting. “I never got him to speak, and it was something that was haunting me. Language was something that was missing.” Martinez, who started his surf-therapy school after being inspired by how surfing helped his brother, who has Down syndrome, said he researched the various uses of CBD oil after Gladys asked him about it for Kalel. He told her it was worth a shot. Now he’s cautiously optimistic about how other children may benefit.
“I’m not going to say let’s give this to every kid, because we have to monitor and study it,” Martinez says. “But I am very impressed with his language development. Imagine a mom who has been waiting almost 9 years to hear her child speak?” Though the use of anything cannabis derived continues to be controversial, he believes it is something worth fighting for, given this kind of a result. “To me,” he says, “the story of Kalel is groundbreaking.”