Epileptic Boy’s Parents Frustrated by Delays Plaguing Medical Marijuana Rollout

pkripper503/iStock/Thinkstock(ORANGE COUNTY, Fla.) — Andrea Saretti’s son Sam starts the day each morning by putting on a special helmet and medical bracelet to protect him in case he falls to the ground with a seizure.

Sam, 9, was diagnosed with epilepsy last year and has suffered seizures that have not stopped despite multiple medications and even an electronic implant that is designed to prevent seizures by sending mild electrical pulses to the brain through the vagus nerve.

“He misses a lot of school,” Saretti told ABC News. “He had a seizure in the road on the way to the bus stop. … It happens at school and happens at restaurants and happens everywhere.”

The medications Sam is currently on have helped somewhat but they have also led to side effects, including weight gain, Saretti said, noting that Sam, who is also autistic, went from 80 pounds to over 120 pounds in just one year of treatment after being prescribed adult doses of medication to try and stop the seizures.

While many doctors are reluctant to say with certainty that marijuana can help with epilepsy, patients who have found little relief with conventional drugs have turned to the natural remedy as anecdotal reports suggest it can reduce seizures.

Sam’s doctors decided last fall they wanted to try using low-THC cannabis to help Sam, his mom said, referring to the psychoactive chemical found in marijuana. The timing seemed perfect as the Florida legislature passed the Compassionate Medical Cannabis Act in June, allowing doctors to prescribe low-THC cannabis to patients with certain criteria in Florida.

However, while the medical use of the drug became legal as of Jan. 1, Sam and his mother are still waiting to get the medication.

The reason for the delay is that a Florida administrative law judge invalidated the Florida Health Department’s plan to use a lottery system to choose marijuana growers. As a result, no one in the state is currently allowed to grow marijuana and the Florida Department of Health has been meeting with potential growers to decide how to proceed, according to ABC News affiliate WFTV-TV in Orlando.

“There are many parents across the state who are waiting with baited breath [saying] ‘When is this going to be available for my kid?'” said Saretti, noting she’s talked online to parents in similar situations.

Saretti said she’s hoping something will change in the coming months so that Sam can stay in school rather than be stuck at home, where he can be more easily monitored.

“We’re looking at [being] home-bound now for the remaining of the year,” said Saretti. “You look at quality of life — something like [the Compassionate Care Act] can give him back a quality of life.”

After consulting with growers and others about how to progress forward, the Florida Health Department announced last week that a panel would convene in February to discuss how to implement that act and approve marijuana growers in the state.

“The department remains committed to getting this product to children with intractable epilepsy and people with advanced cancer as safely and quickly as possible,” read a statement from the Department of Health. “This rulemaking negotiation is part of the department’s commitment to working with all stakeholders to arrive at a rule and start providing the product to those who need it.”

Dr. Elizabeth Thiele, the director of the Pediatric Epilepsy Program at Massachusetts General Hospital, said low-THC cannabis or cannabidoil (a chemical derived from cannabis) has been used by some patients only after cycling through different medications unsuccessfully.

However, Thiele, who has not treated Sam, said there has been no large comprehensive study examining if cannabis-derived medications are an effective treatment for epilepsy. But epileptic patients including some children across the country have been trying out low-THC cannabis as a last resort, she said.

Thiele is currently studying 25 pediatric patients with epilepsy who are being treated with doses of cannabidoil, which contain virtually none of the psychoactive ingredient of cannabis. She said early results have been promising but not a total success in treating seizures.

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