TAMPA — Renee Petro believes an illegal drug, marijuana, could save her son Branden’s life where sophisticated modern medical therapies have failed.
Expert physicians say she might be right.
For three years, the Petro family of Fishhawk have lived through a nightmare that took away their smart, happy 8-year-old almost overnight, and left instead a child afflicted with constant seizures, severe learning disabilities and suicidal depression — a child who could die at any moment, his mother believes.
“I just want my son back,” Petro said in an interview at her home last week.
A raft of medications, a diet and a nerve-stimulating implant have failed to stop the daily seizures, which leave him with temporary paralysis and difficulty breathing. Surgery won’t help because the damage to his brain that causes the seizures is diffused, not in a single location.
A chemical contained in marijuana called cannabidiol, or CBD — one that doesn’t get you high — has stopped seizures in other children.
Among experts on this kind of brain damage, a form of epilepsy, “there’s a general consensus that it would help,” said neurologist Selim Benbadis, director of the epilepsy program at the University of South Florida College of Medicine and Tampa General Hospital.
“Most of my colleagues who run epilepsy centers around the country agree,” he said. “There’s no question in my mind that it does help seizures.”
Benbadis, who has not treated Branden Petro, said he would advise marijuana in such a case if other standard, tested treatments had failed — and if it were legal.
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Last week, Petro traveled to Tallahassee to testify before a state legislative committee that’s considering legalizing a form of marijuana.
Branden “talks about killing himself, constantly. He says he’s tired of being sick, and would rather ‘be up there,’” she told the committee.
The strain of marijuana the Petros want to use, in the form of an oil extract, is high in CBD but contains almost none of the chemical that causes a euphoric high — tetrahydrocannabinol, or THC.
It’s legal in Colorado. If they have to, Renee Petro said, they’ll move there.
“They can smoke it till they get a headache, but they’re not going to get high,” said Joel Stanley, a Colorado grower who helped develop the strain and testified at the hearing.
It’s called “Charlotte’s Web,” for Charlotte Figi, a 7-year-old from Colorado Springs whose mother also came to Tallahassee for the hearing. She told the committee the plant has virtually ended her daughter’s seizures, which used to hit hundreds of times a day.
Florida legislation to legalize marijuana for medical use has been proposed for several years, but has gone nowhere in the conservative, Republican-dominated Legislature.
After last week’s testimony from Petro and other parents in similar situations, however, state Senate President Don Gaetz, R-Niceville, said he’s willing to consider advancing the legislation.
The Petros have another alternative, but Renee Petro fears it would come too late to help: a petition drive for an amendment to the state constitution to legalize marijuana for medical use. The proposal would not limit medical marijuana to any particular strain.
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Late last week, the organization behind the drive — the United for Care campaign — announced it had collected 1.1 million signatures, which it thinks will be enough to land a place on the Nov. 4 election ballot. The group needs 683,149 valid signatures by Feb. 1. Local elections supervisors must check the authenticity of each signature.
Supervisors had verified 492,587 signatures as of Thursday.
Ben Pollara, manager of the United for Care campaign, said any action by the Legislature to legalize the Charlotte’s Web strain, while helpful, would fall short of satisfying the goals of the amendment. The euphoric agent, THC, is responsible for benefits including pain relief and appetite revival in AIDS and cancer patients, he said.
“We’re certainly supportive of the bill,” Pollar said, “but this would help only one segment of the population. There are thousands or hundreds of thousands of other Floridians who need help this wouldn’t provide.”
State officials, including Attorney General Pam Bondi, have challenged the amendment before the state Supreme Court, seeking to keep it off the ballot. They contend that the wording of the ballot language is unclear and deceptive, allowing doctors to prescribe marijuana for virtually anything they choose.
Branden’s father, Fadi Petro, is an Army colonel who works with the U.S. diplomatic service and has spent eight of the last 11 years in the Middle East. He’s not allowed to say where or to talk about his work.
He comes home for, at most, four visits a year. He can’t leave the Army, he said, because the family depends on Tricare, the military health care program.
“I have to be out here so we can keep the medical care going,” he said in a video interview from overseas.
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Before his illness, Branden, now 12, was a forward on the Fishhawk Elementary School soccer team, a gap-toothed kid who grinned broadly in photos, studied Hebrew and Arabic, and wanted to be president.
“He was a very bright young boy, a leader,” said Fadi Petro. “All the other kids would come to our house and he would lead them around the neighborhood.”
He was also something of a flirt. When the family went to a friend’s wedding a few years ago, Branden hit on the bridesmaids for their phone numbers. He assured them he intended to make plenty of money if they would wait for him, and he brought home half-a-dozen numbers, his mother said.
All that changed in July 2010 while the Petros were visiting relatives in Jordan.
At first, it seemed Brandon had simply caught a cold with a fever. Doctors gave him antibiotics.
As his condition deteriorated, they put him into a medically induced coma and flew him to a military hospital in Germany.
When he awoke, he recognized his family members — little sister Rachel was the first person he asked for — but almost nothing else about his life.
“We had to teach him to eat and walk all over again,” his father said.
“He has lost all his friends,” and now attends a special education program in Valrico, his mother said.
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What Branden caught isn’t known. Its effects are consistent with febrile infection-related epilepsy syndrome, or FIRES, as described in a 2011 study by epilepsy researchers at Harvard and at universities spread from Tel Aviv to Paris.
Of the 77 patients in the study, nine died of the initial fever. Of the survivors, 66 suffered epilepsy and 54 had mild to severe cognitive defects ranging from learning disabilities to a vegetative state.
Branden takes four powerful medications three times a day, plus a fifth as needed to combat the depression — a side effect from one of the anti-seizure medications, his mother believes.
“I’m sick,” he tells a visitor as they’re introduced at his home. Then he pulls away from his mother and retreats to a corner of his room.
Renee Petro believes Branden’s mental problems, including aggressiveness and withdrawal, are reversible.
Not any time soon, though, she said.
“I worry that one day I’ll wake up and he’s done something to himself,” she said.
For that reason, they’re trying to reduce the medication. But the result is more seizures.
She said she and her husband have never tried to get marijuana for Branden.
“If I break the law, I could lose my children.”
The Petros don’t favor full legalization of the drug.
“I don’t even like to use the word ‘marijuana,’” she said, insisting instead that what Branden needs is just an extracted oil.
Fadi Petro said he has no use for proponents of full legalization who “ride on the children’s coattails to try to bring in recreational marijuana.”
At the hearing in Tallahassee, Renee Petro said, a legislator asked whether she would commit a crime for her children.
“I think these medications are criminal,” she said back home, gesturing to the medications Branden takes. “It’s criminal that they give these to our children, knowing what they do, and won’t look outside the box.”
“This is America,” she said. “Maybe this is the drug that could give him his life back, and we can’t use it.
“I just want my son back.”
Information from Tribune wire services was used in this report.