To help get her son, Branden, the medicine he needs, Renee Petro has traveled to Tallahassee to meet with legislators and advocate for medical cannabis. Representing CannaMoms, a group she co-founded, she has gone to the United Nations to promote the use of medical cannabis.
Several years ago, she began a gofundme.com campaign, “Please Help Branden Relocate,” asking for financial contributions so she could move her family to California, where medical cannabis has been legal since 1996.
She even traveled to California with her son to obtain legal medical cannabis. They thus became two of a growing number of “medical-marijuana refugees.” These are people (often, parents of sick children) who, unable to obtain legal cannabis in their home state, go to another state where its use is allowed for medical reasons.
“I went (to California) with a couple of other moms. I went to a dispensary and picked up all sorts of strains and tried different ones. Branden went 45 days without a seizure,” Renee says.
Sudden, drastic change
Branden, now 15, had no health issues until he and his parents and his sister, Rachel, now 12, took a trip to Jordan in 2010 to see Renee’s parents. Branden’s father — Renee’s husband — is U.S. Army Col. Fadi Petro, who is serving in Iraq.
On July 11, 2010, their then-8-year-old son developed a headache; the following day, he was tired, sensitive to light and had a low-grade fever. A doctor put Branden on antibiotics, but he continued to decline.
Then came July 17
“After a four-hour nap, he woke up at 7 p.m., went to the bathroom, came into the kitchen and looked at me like he was frozen in time,” Renee recalls. “His hands went up in the air. He couldn’t speak. … He had a grand-mal seizure — seizure after seizure after seizure. He was yelling and screaming.”
Branden was soon flown to Germany on a medical-evacuation flight, where he was put into a three-week-long medically induced coma; then flown to Walter Reed Army Hospital in Washington, D.C.; then to All Children’s Hospital in St. Petersburg, Fla.
In All Children’s, “He was on a lot of medications and in the hospital for about four months,” Renee says. “He’d always been a healthy child — outgoing, compassionate, smart. When we took him back home, he didn’t remember his friends or neighbors, and he experienced hallucinations and suicidal thoughts.”
Eventually, Branden was diagnosed with febrile infection-related epilepsy syndrome. FIRES “is a rare epilepsy syndrome of unclear etiology in which children, usually of school age, suddenly develop very frequent seizures (up to hundreds per day) within two weeks after a mild febrile illness,” according to the Connecticut-based National Organization for Rare Disorders.
“The doctors kept masking his condition with more medications,” Renee says. “I decided to take my son’s health care into my own hands. One of the meds — Depakote — made my son go crazy. He was aggressive.”
The potential side effects of Depakote, made by AbbVie Inc., can include “serious liver damage” and “inflammation of your pancreas,” according to www.depakote.com. Other potential side effects, according to the website, include “feeling agitated or restless; panic attacks; trouble sleeping (insomnia); new or worse irritability; acting aggressive.”
Renee Petro weaning son from pharmaceuticals
Until several years ago, Branden was taking a dozen pharmaceutical medications, Renee explains, including three seizure “meds.” He is now down to one seizure medication and no other pharmaceuticals. She says he has been on a total of 25 pharmaceutical medications, at one time or another, since July 2010.
Fortunately for the Lithia resident, she can now obtain the medication her son requires. “Cannabis has truly been a life-saver,” says Renee, who co-founded CannaMoms but is no longer active in the organization. She has used various strains of cannabis to help her son, administering them in various ways, including oils, tinctures, salves and inhalers.
Renee admits that, because the medical-cannabis industry is in its infancy, the strain and the dosage used are “trial and error.”
Son is outgoing, friendly
Branden is a friendly, affectionate young man who delights in shaking hands and “high-fiving” with a visitor (i.e., this writer) and encouraging him to make funny faces. Branden also likes to play games, especially Wii Sports, with Mom; and he plays to win.
Renee Petro credits cannabis with his transformation. “Weaning him from pharmaceuticals and giving him cannabis has been amazing. The man-made drugs gave horrible side effects.”
She and a full-time nurse stay at the house with Brendan, who is home-schooled. What if Branden suddenly has a seizure? “If I give him cannabis, then within two minutes to 30 minutes, he’s sedate and calm.”
Renee supports medical cannabis and wants more research done on its effectiveness. She also opposes cannabis’ status as a Schedule I drug under U.S. Drug Enforcement Administration guidelines. According to www.dea.gov, “Schedule I drugs, substances or chemicals are defined as drugs with no currently accepted medical use and a high potential for abuse.”
“I’d go to hell and back”
Renee has faith that she — using an assist from medical cannabis — can help her son. “I’ve watched him suffer for far too long. I’d go to hell and back for my son, and I have. I’m going to get him better.” However, she fears that during the upcoming session of the Florida Legislature, any medical-cannabis legislation passed will be too restrictive.
She also explains that she does not consider all pharmaceutical medications bad. “They can be lifesaving,” she notes. “But for some patients, a pharmaceutical is bad. So if there’s a better way, find it and use it.”
Renee Petro has found at least two better ways. If Branden is exhibiting symptoms of aggression, she gives him CannatolRX P450 Proxy Sublingual Spray. If her son is having a seizure that lasts more than one minute, she administers CannatolRX Rescue Nasal Spray. “It literally stops a seizure in its tracks,” Renee explains.
On Jan. 1, a videographer and a reporter from WFTS Tampa Bay’s Action News witnessed one of Branden’s seizures while filming at the Petro home. The video, which shows Renee administering the Rescue Nasal Spray to Branden, also records his quick recovery.
To see the two-minute, 40-second video, visit http://www.abcactionnews.com/news/health/exclusive-cannabis-nasal-spray-stops-epileptic-seizure-in-its-tracks.