When Evan Crudup was just 4, he suddenly lost all of his language and began to daydream (later identified as seizures). His mom, Nicole, watched her easy-going, happy child struggle both physically and emotionally rather quickly, eventually leading to a diagnosis of a rare form of epilepsy called Landau-Kleffner Syndrome.
Despite more than 10-plus medications to control his hundreds of seizures a day, it wasn’t until this year—four years after his initial diagnosis—that he found relief. The miracle drug his mother credits is Epidiolex, or Cannabinol, a CBD oral solution approved by the U.S. Food and Drug Administration in December 2018 to treat various forms of seizures.
Epidiolex is the first FDA-approved drug that contains a purified drug substance derived from marijuana and it must be prescribed only by a pediatric neurologist. According to the FDA, the medication produces anticonvulsant affects without an accompanying psychogenic high.
After a few months of being on the medication and finding the “sweet spot” of the correct dosing, Nicole says Evan’s seizures drastically dropped, and he began talking again.
“He is like a different kid,” she says. “He isn’t doped up all the time, he is talking and happy. It’s been amazing to see his personality blossom again.”
Nicole is just one of many parents of children with special needs who have turned to CBD to treat her child’s symptoms. While controversial, the media hype surrounding these products, coupled with the success stories, have led many parents down this avenue.
Dr. Rahul Khare is the founder of Innovative Wellness, a medical cannabis consulting practice and CBD retail store in Lincoln Park, and an emergency medicine physician at Advocate Illinois Masonic Medical Center. He works with parents whose children suffer from epilepsy, cerebral palsy, spasticity, traumatic brain injuries and various behavioral disorders.
He says he considers himself to be a second stop in the medical journey of a patient, most times after frustrated parents do exhaustive research about additional treatment options for their child.
“Parents might be taking their kids to the best hospitals in the country, but doctors don’t feel comfortable broaching the subject of cannabis or CBD because they aren’t properly educated,” Khare says.
Khare evaluates patients and works closely with parents to help a child obtain a medical marijuana card. Together, they determine the best course of treatment, which may include one or more of the following methods: RSO (oil ingested within the gums), tinctures (liquid under the tongue), balms (rubbed into the skin), patches (absorbed through skin) or edibles (eaten in chocolate or jellybeans).
“Cannabis is an organic, natural remedy with a safety profile that’s unlike any other medicine out there,” he says.
But he cautions parents considering this route to see a licensed medical professional who can offer guidance on using hemp or cannabis products medically.
Kelly Cervantes, of Chicago, found out the hard way that there are dangers in not going through a professional. A few years ago, she treated her then-15-month-old daughter, Adelaide, who suffers from a multitude of medical issues (including epilepsy, Dysautonomia and Mast Cell Activation Syndrome), with CBD she ordered online.
At the time, doctors at major medical centers were not permitted to work with patients on CBD because it wasn’t federally regulated. So with only a guide from the company she ordered from and the advice of Facebook communities, Kelly was on her own, starting Adelaide off with a low dose and slowly titrating up.
During a routine visit to the dietician, however, a blood test showed that Adelaide’s liver enzyme levels were dangerously high, most likely due to a medication interaction with CBD.
“I got understandably scared off and stopped giving it to her immediately,” Kelly says. “I’m not a pharmacist or medical professional, I was just doing the best with the information I had.”
Adelaide, now 3, is currently on Epidiolex to control her seizures. While Kelly has yet to see any positive or negative impact from it, she says it feels like night and day being under the care of a doctor who can now consult with her on dosages and monitor Adelaide’s response through routine tests.
Kelly, who runs the “Seizing Life” podcast for Citizens United for Research in Epilepsy, says there are so many misconceptions about cannabis and CBD, mostly perpetuated by the media.
“CBD gets a ton of play because it’s a hot topic right now. There’s a misconception that it can’t do any harm, but it is still affecting chemical reactions in the body. It can work wonders for some people, but we haven’t found it to be the case for our daughter.”
The facts on CBD and Cannabis
In general, the American Academy of Pediatrics is opposed to any type of medical marijuana, outside the FDA regulatory process. While the AAP recognizes cannabinoids as potential therapy for a number of medical conditions, it feels there are currently not enough studies to support changing the stance.
Epidiolex became the first FDA-approved CBD-based drug to hit the market. It contains a CBD isolate, which is a substance derived from the cannabis plant.
CBD and THC are not the same: CBD is the abbreviation for cannabidiol, one of the many cannabinoids (chemical compound) found in marijuana and hemp; THC is another compound found in the cannabis plant. But unlike THC, CBD is not psychoactive.
CBD may be taken in a number of ways: Most commonly for children with special needs, it can be ingested within the gums, liquefied under the tongue, rubbed into the skin, absorbed into the skin or eaten via edibles.
Look for a reputable medical dispensary: Parents who are considering CBD and cannabis for their child should visit a high-quality medical cannabis facility where they can work with a team of experts on their child’s care plan.
This article originally appeared in the Summer 2019 issue of Chicago Special Parent. Read the rest of the issue.