Imagine this: Your first-born child all of a sudden has hundreds of seizures a day, and not a single drug prescribed by your doctor works. What would you do?
A South Bay couple took a giant leap of faith, but as Kiet Do reports the treatment they're using is at the center of an important court case.
In Santa Clara County, 5 years ago, a baby was born. His name: Zachary.
"He is a special little boy," said Zach's father Dan Kubisz.
"He was normal for all intents and purposes," smiled his mom Jennifer Kubisz
But, a few months into his young life, Zach began to twitch. His arms and legs would flail.
In a video taken by his mom at the doctor's office, KPIX News counted 4 seizures in 50 seconds.
Zach would suffer from hundreds of tiny seizures a day.
"The longest couple of minutes in my life was walking from the doctor's office all the way across the hospital to their intensive care unit for babies in my arms.. he's just seizing," recounted Dan, with tears in his eyes.
"He had essentially normal brain wave activity. it was just background seizures all the time," explained Jen.
Zach was diagnosed with a dangerous form of epilepsy: infantile spasms with hypsarrhythmia
"For a year, we tried every medication that we could, last I totaled it - 12 to 14 different medications." recounted Zach's mom.
The prescription drugs did not stop the seizures,
They also had devastating side effects.
"He was just like empty - his eyes were glossed over he just wouldn't look at you." said Jen.
Doctors told them it would get worse; that Zach would be better off in an institution.
"The doctor did talk to us about our son going into an institution - -it was very hard to swallow," explained Dan.
"Dan and I were horrified." added Jen.
Then late at night, unable to sleep, Dan could not believe what he was seeing - on television.
"I was watching random things on TV, and just stumbled upon a show showing a child having a seizure and someone was giving him a liquid and all at once their seizure was stopping and I'm like what the hell's going on here?," recounted Dan.
The program showed that the liquid contains a special cannabis chemical compound.
It's called CBD, and it's found in both industrial hemp as well as in marijuana - an illegal drug.
But give it to your baby? Your little boy?
Zach's mom needed convincing. Jennifer is an ICU Nurse, and relies on treatments that have hard evidence to back them up. Not only that, wasn't cannabis dangerous?
"I was really against it. I was always told drugs are bad," said Jen.
Unlike the THC compound that is found in marijuana, CBD is not psychoactive. It does not get you high.
The boy's neurologist said the couple had nothing to lose, since all the prescription drugs they were using on Zach were not alleviating his seizures, and he was suffering.
With CBD, Zach's brain waves returned to normal
"Within three weeks, a month - he stopped seizing," exclaimed Jen.
"CBD had been our shining light that it really was for us. that miracle that changed his world," remarked Zach's dad.
Now CBD is at a legal crossroads.
The intersection: The 9th circuit U.S. Court of Appeals in San Francisco, in front of a 3-judge panel.
KPIX News was inside the court room as the oral arguments were delivered.
"What is the industry afraid of," asked Justice Richard C. Tallman.
"We've seen this drug code utilized week after week since its enactment to seize, to cause criminal enforcement against lawful operators who require no DEA registration," replied Robert Hogan, attorney for the Hemp Industries Association.
The hemp industry filed a lawsuit against the DEA, challenging a new drug code for Marijuana Extracts.
The new code asserts all cannabis extracts - including CBD - are controlled substances and illicit.
Hoban and his legal team are concerned the DEA is outlawing all CBD- no matter the source.
Unlike marijuana, and thanks to Congress, industrial hemp is not a controlled substance.
"The rule purports to schedule CBD as a schedule 1 substance and it gives all these agencies.. law enforcement agencies.. across the country to say look this rule makes those extracts controlled substances"
The crackdown has already begun. On February 12, 2018, authorities raided and padlocked 23 stores near Nashville Tennessee because they sold products containing CBD - an ingredient the sheriff called "illegal"
"It's my understanding that was from industrial hemp and not marijuana," said Hoban.
As for Zach's parents, the CBD they use comes from marijuana and they buy it at a dispensary, It's called Jayden Juice and it was developed by a dad for his son Jayden to help alleviate his symptoms caused by epilepsy and autism.
Jen and Dan give a dose to Zach 3 times a day.
The little boy has defied all odds.
"He's walking and he's talking and he's definitely got some developmental issues but we really don't have seizures anymore," said Jen.
Zach has gone camping with his parents in Yosemite, and recently visited the Color Museum in San Francisco where he had a ball.
"He's .. an angel" said Dan.
The concern: If the law is attacking CBD in hemp, will Zach's medicine soon be next?
As for the DEA, the lawyer in court declined KPIX's request for an interview. But in court, she argued how the agency needs the new code to better track the cannabinoids like CBD for research purposes as well as to better live up to international treaty obligations.
Useful Links for more information:
U.S. Courts for the Ninth Circuit
Hemp Industries Association
DEA New Drug Code for Marihuana Extract
for more features.