The last we'd heard from Renee Petro, the Florida pot advocate whose story was highlighted in our recent feature on medical marijuana refugees, the pint-sized parent was still fighting to obtain cannabis for her son, Branden, a FIRES sufferer.
Branden's debilitating seizures were spiraling out of control, and like the other parents in our story, Renee found herself caught between conflicting state laws and ideologies on medical marijuana. Traditional treatments weren't working for Branden, and in Florida -- much like Texas -- when it came to matters of medical marijuana, her hands were tied.
Well, not anymore. After about three weeks on a cannabis protocol, Branden is now quite likely to test positive for THC -- legally.
After hearing Branden's story, MedMen, a marijuana consulting company, found themselves pretty impressed with the resolve of the advocacy group CannaMoms, an advocacy group that Renee helped found. They offered to fly the whole CannaMoms crew out to Alameda, California, with one mission in mind: weed.
The lifesaving trip included Branden, who suffers from the seizure disorder FIRES, Christy, who has epilepsy, Bruno, who suffers from Dravet, and Dahlia, who is fighting a glioma brain tumor.
"By us going to California, we wanted to show the other parents that, hey, there's nothing to be afraid of," said Renee. "If you're too afraid, you're going to lose that person you're not fighting for."
Their first stop in California was to get legal, a requirement to get marijuana treatment in the state. Red Card in hand, the families then met with practitioners at Harborside Health Center,a highly-respected medical cannabis clinic that was charged with helping the parents with treatment.
"Going through the process was so important for me," said Renee. "The doctor -- just like the medical doctor -- sits down with you and talks to you about the yay and nay of cannabis, and how this might not work, but it might -- all the legalities of it."
Treatments created by Harborside were initially tailored to each child's diagnosis, and it was up to parents then tweak the medication as they saw fit.
"Harborside brought in researchers and scientists, if you will, that are familiar with cancer and epilepsy and cannabis," said Renee. "They look at your child's ailments, or seizures, and the ways that different companies have come up to treat them. They also look at the ways to ingest them that have worked in the past and come up with a treatment plan to start with."
For Branden, this was his first treatment with cannabis. Parental input and control over dosage was quite unlike the strict regiment of the pharmaceuticals, but Renee was confident with her crash course in the science of marijuana, and she quickly adjusted.
"You're almost like your own kid's herbologist," said Renee, laughing. "But you're experimenting with something that won't hurt them."
A bit of THC here, a higher dose of CBD there. Everything was adjusted based on Branden's symptoms, and the changes they saw before and after a seizure.
"Branden was like 'Okay mom, I feel a seizure coming,' so I would give him some THC because I knew when it came to pharmaceuticals, benzos would calm the seizures down, and the science is similar," said Renee.
Ultimately, it was the Care by Design mist that did the trick. The duo sampled different ratios and strengths, and found that ultimately, equal amounts of cannabidiol, THC, and CBD worked best for his body.
And by worked, Renee means the new treatment worked utter miracles. Branden had been seizing about 5 to 7 times a week in clusters before cannabis, and has now been seizure-free for nearly three weeks.
"My son is going on three weeks without seizures," said Renee. "He has had one other time where he went about three months seizure free on the pharmaceuticals, but the state of mind he was in was like a vegetable. He was drooling on himself. He couldn't function."
But this time, there aren't those horrible side effects. He's just happier, said Renee, and for a little boy who was begging to die before cannabis, happiness is hard to come by.
"The worst thing Branden has asked me for this time was a bag of Cheetos," laughs Renee.
The California-based nonprofit Cann-I-Dream Foundation also helped to offset costs for the parents. And with the kids feeling so good, says Renee, Cann-I-Dream even went so far as to organize a trip to the Oakland Zoo.
The trip was an obvious success for the CannaMoms, but with Branden improving, Renee is even more worried about the other parents across the nation who aren't able to get the treatment for their children.
"Being in California and seeing what they're able to do, it make it obvious that each state needs reputable dispensaries and reputable testing labs," says Renee. "But it takes people to stand up and say enough is enough."
And as always, Renee plans to be the one to do that.
"Before we left, I pretty much dared his neurologist. I said, I am going to successfully wean my child off of this poison -- as much as I can -- and I am going to successfully find the right cannabis plant," said Renee. "And when I do, I am coming back here and I'm going to be teaching you about how to treat your patients."
"He looked at me and said, 'Knowing you, you probably will.'"