Zaki Jackson was 6 months old when doctors diagnosed him with a form of epilepsy so severe that it sparked as many as 250 seizures a day.
For years his mom, Heather Jackson, feared for his life. “He would stop breathing,” she told NBC chief medical editor Dr. Nancy Snyderman. “All the air leaves his lungs and he does not take another breath until that seizure is over.”
After 10 years and 17 medications, Zaki wasn’t getting any better. Then, finally, his doctor wrote a prescription for a medication that calmed the electrical storms in Zaki’s brain. The surprise was that it wasn’t for a standard anti-seizure medication -- it was a prescription for marijuana.
Zaki’s case isn’t unusual as it may seem. Eighteen states, plus Washington, D.C., allow use of medical marijuana. A number of them provide prescriptions to children, with parental supervision, to treat a host of ills, ranging from autism to cancer to seizures.
Critics, including the American Academy of Pediatrics, argue that the remedy hasn’t been clinically tested in kids and might have some long-term ramifications.
Zaki’s parents were surprised at first and a bit taken aback. “We are Christians,” Jackson said. “We are conservative. And we’re using medical marijuana. That’s a kind of big hump for people to get over. Despite the stigma associated with cannabis, we owed it to Zaki to give it a try.”
Jackson said the results were immediate and stunning. “I probably stared at him for a good three hours after his first dose and then I fell asleep. I didn’t feel any seizures after his first dose,” his mother said.
In fact, it’s been eight months since Zaki’s last seizure and he's finally starting to do normal kid activities, like ride a swing.
Zaki's pot is provided specifically for him by a team of brothers who legally grow medical marijuana. It has been bred to have low levels of TCH, but higher levels of another cannabinoid called cannabidiol, or CBD.
While both cannabinoids impact pain, nausea and seizures, CBD isn’t psychoactive, said Dr. Margaret Gedde of the Clinicians’ Institute for Cannabis Medicine. That means that kids using this type of marijuana won’t get high.
Cannabinoids work by hijacking normal brain circuitry.
In other words, the cannabinoids in pot are very similar to substances our own brains naturally make, called endocannabinoids. These substances serve to quiet excessive activity, whether it’s in the immune system, in the gut or in the nervous system, Gedde explained to NBCNews.com.
When cells become overactive, a switch is thrown and endocannabinoids are released. Once they lock on to receptors in the brain, “a message is sent to tell the cells to calm down,” she said. “It’s a balancing system and it’s what keeps seizures from happening in healthy brains. In these kids the system is overwhelmed. It needs a little extra help.”
That’s where the pot comes in. For Zaki, it’s delivered in a syrup that he takes each day, which contains an extract of purified cannabis oil that is high in CBD, Gedde said.
While the drug seems to be working miracles for Zaki, some doctors believe its safety in children needs to be tested in clinical trials.
“I worry that we just don’t know enough about it,” said Dr. Sharon Levy, of the Boston Children’s Hospital/Harvard Medical School. “I think they’re putting their child at risk of long-term consequences of marijuana use that we don’t fully understand.”
There are plenty of examples of highly touted therapies that turned out to be ineffective, or in some cases downright harmful.
“A couple of generations ago physicians were recommending tobacco as a good method of relaxation or to relieve stress,” Levy said. “It seems unbelievable now.”
While clinical trials are all well and good, there are children like Zaki who need help right now, Gedde said, adding “medicine existed before the Food and Drug Administration.”
While there may still be some questions about the impact of marijuana on growing brains, “this is a substance that’s been used for thousands of years and it has a known safety profile,” Gedde said. “And there’s a long history of women using it in pregnancy. If there was some terrible defect that came up in children exposed in utero, we’d know about it by now.”
Ultimately, for a child like Zaki with a dangerous condition, even approved anti-seizure drugs can cause side effects, Gedde said.
For the Jacksons, it was an easy decision.
“Medical marijuana is definitely saving Zaki’s life,” his mother Heather said. “It’s saving his life and it’s giving him a quality of life."
Sylvie Haller is a producer with NBC Nightly News; Linda Carroll is an NBC News contributor