Mom of epileptic son caught in Charlotte's Web medical marijuana bureaucracy –


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Just as 13-year-old Branden Petro flops into the passenger seat of his mom’s car, his eyes roll back. His face twitches uncontrollably. He curls into a fetal position.
It is his third seizure on a particularly bad day. His mother, Renee Petro, 36, jumps from her seat and runs around the car. She pulls the backpack off her son and grabs his hand.
“Squeeze my hand if you can hear me,” she pleads. “Squeeze my hand, Branden. Come on baby, squeeze my hand.”
Every seizure terrifies her. Any seizure could cause more brain damage. Any one could be the first sign his condition is getting worse. Other children with his condition have taken a turn for the worse and been dead within a year.
She has heard medical marijuana helps children with seizures. The Florida Legislature passed a bill last year, which the governor signed, legalizing Charlotte’s Web, a form of medical marijuana that does not produce a “high.” But its use is still tied up in political fights and legal bureaucracy. Other forms of medical marijuana remain off-limits.
She knows many people think marijuana should remain illegal. She recognizes law-enforcement fears that legalization could make marijuana easier for recreational users and addicts. She’s heard how pill-mill doctors would line up to dispense pot. She respects that it is illegal in Florida, and she does not want to break the law.
But being a good mother means far more to her than being a good citizen.
“I have said it a thousand times. I will not bury my son. But I should not, not for a split second, have to think about doing something illegal to be a good mother. We live in the United States of America,” she said.
During summer vacation in 2011, Branden had what seemed like a routine fever. A few days later, he had a seizure and ended up in the emergency room. He fell into a coma. The seizures have not stopped since.
Eventually, he was diagnosed with febrile infection-related epilepsy syndrome. The condition is a medical mystery and it is treated with high-dose drugs, including antipsychotics.
A balancing act began. The drugs helped control seizures, but if he took too many, he became extremely lethargic. If he took too few, or the wrong mix, the seizures were not controlled
For his parents — dad is an active duty, deployed Army colonel, …Read More

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