Katelyn Baker
Well-Known Member
A few months after the Inman family traipsed the State House halls to press lawmakers to legalize medical marijuana, doctors wanted to cut open their son's head, again.
Jenny and Alex Inman had helped reshape Maryland's medical marijuana laws as parent-advocates, telling lawmakers the drug held promise to tamp down Lukas' frequent and sometimes paralyzing seizures. The boy, then 15, suffers from Lennox-Gastaut Syndrome, a form of treatment-resistant epilepsy that surgery and drugs had failed to control.
The political fight was won, but their son's condition worsened before they could reap the benefits. Lukas had lost teeth in falls from increasingly debilitating seizures. His IQ was dropping further, a consequence of years of brain trauma. Another medication began to fail them, and he was out of school more often than he attended.
"We just felt like we couldn't wait," Jenny Inman said.
With Maryland's medical marijuana market still years away, the Inmans moved from Rockville to Colorado Springs, Colo. They are medical refugees in a state where doctors and parents had for years extolled the benefits of cannabis oil for epileptics.
"If the choice is cut your kid's head open or try an oil, you try an oil," Alex Inman said.
Maryland passed a medical marijuana program in 2013, but it has been one of the slowest states in the nation to allow the product to reach the market. The General Assembly has modified the program every year, and now is weighing more regulatory changes, which the state's Medical Cannabis Commission says will cause further delays.
As the years rolled by, the Inmans and other potential consumers have left the state. Others, after consulting their pediatricians, have found solutions outside the legal medical marijuana market. Some get by with what they consider half-measures – dosing their children with hemp oils and waiting for Maryland's cannabis industry to launch.
The Maryland Medical Cannabis Commission, charged with setting up and regulating the new industry, crafted a program that attracted applications from more than three times as many businesses than they expected to grow, process and dispense the drug.
The onslaught slowed the initial approval of preliminary licenses. The process is now subject to three lawsuits and a half-dozen bills aimed at changing the commission or the licensing system it implemented.
Commissioners say they're about to launch the program if there are no further delays: the panel is prepared to issue final licenses and expects dispensaries will open this summer.
"Eleventh hour legislative changes to the program, at this very late stage in the process, would cause serious detrimental delays impacting sick people getting their medicine," Dr. Paul Davies, who chairs the commission, wrote in an email.
Before Lukas Inman's seizures started at 3, his IQ was 130, his parents say, and they enrolled him in a program for the gifted. Two weeks ago, it was 59, a number his parents celebrated because it had held steady from four years ago, and marked the first time it had not dropped by 10 to 20 points from the previous test.
Looking back, the Inmans are pleased they didn't linger in Maryland.
A year after Lukas started using cannabis oils in Colorado, the frequency of his seizures declined by 60 percent, to less than 30 a month. His parents weaned him off most other pharmaceuticals, which they said dulled his personality.
He's in a special education program at a public school in Colorado. He wears a helmet, but when he's not seizing he can communicate and attend school.
"We made the right choice," Alex Inman said. "It means he goes to school a lot more. It means that he's able to talk a lot more. His eyes are brighter, and he can laugh with us at the dinner table."
Not all patients have to move to access some form of oils containing cannabidiol, or CBD. They are easy to find online, and have become popular with people with disorders that cause seizures.
That's how Casandra Stephan first discovered hemp oils: Googling seizure remedies on her phone while waiting for her 2-year-old daughter, Lillyann Baker, to convulse again.
"You feel helpless," Stephan said.
Stephan cares for Lillyann and her two other young children in a Dundalk apartment. The middle child suffered a severe brain injury when a family member dropped her at seven weeks.
Stephan had no interest in waiting for a medical marijuana industry to launch, trusting instead an online gallery of parents attesting to the benefits of a "natural" oil she believed was legal to buy online.
After six false starts, Stephan said she settled on a brand – HempMeds – that reduced Lillyann's seizures within four days. It can cost as much as $400 for a month's supply, company officials said.
Stephan said the oils she found online stopped the seizures. More than a year later, they haven't returned.
With the consent of her doctors, Stephan said, Lillyann has been weaned off most of the drugs prescribed to limit the seizures. Now, at 3 years old, she can recognize colors, scoot around and play with her older sister and younger brother. She has advanced to the skill set of a 6-month-old, which Stephan said is something doctors predicted would be unlikely after the brain injury.
The legality of the hemp oil Stephan uses is in dispute. She and HempMeds say it is legal to buy and sell products made from hemp. They liken the transaction to the legal production of textiles from hemp.
The U.S. Drug Enforcement Agency issued a rule in December making clear it considers all "marijuana extracts" a controlled substance. A DEA spokesman would not comment further on the rule.
Stephan says she was slightly concerned about the legal ramifications of buying the hemp oil – "I don't want to lose my babies," she said – but seized the opportunity to help her daughter.
"I would have fought until there was no breath in me," she said.
She said state Child Protective Services opened an investigation after she started giving Lillyann doses of the oil, then closed it.
A spokeswoman for the state Department of Human Resources said she could not confirm or deny a Child Protective Services investigation.
Even when Maryland's medical marijuana industry opens, Stephan sees no reason to consult a dispensary or shift from ordering the oils online.
"We found something that works," she said. "We're not going to do anything differently."
Cannabis researchers and federal regulators have warned consumers that there is no way of knowing what is in cannabidiol products.
The U.S. Food and Drug Administration sent eight warning letters in 2016 and six in 2015 telling firms to stop marketing their cannabidiol products to treat diseases for which they are not approved. Further, the FDA tested several products and found many did not contain what they claimed.
HempMeds was not listed among the firms.
Despite a lack of comprehensive research on the effects of cannabis medications on epilepsy, the anecdotal evidence persuaded politicians across the country to approve it.
Twenty-eight states and the District of Columbia have broad medical marijuana programs. Another 16 have limited ones, and all but one of those – Louisiana's – specifically allows medical marijuana to be used to treat seizure disorders or intractable epilepsy, according to the National Council of State Legislatures.
Daniele Piomelli, a professor of anatomy and neurobiology at the University of California, Irvine, medical school and editor-in-chief of Cannabis and Cannabinoid Research, said a study not yet published showed cannabidiol might help people with Dravet syndrome, a type of epilepsy that doesn't respond well to seizure medications. Another study showed it could help the symptoms of schizophrenia.
But far more research is needed, he said.
"Public opinion has way surpassed scientific knowledge of CBD," Piomelli said. "A lot of people buy oils rich in CBD in hopes that maybe they see something. People believe in science and that's a wonderful thing, but they think we know more about CBD than we do."
Piomelli and Ryan Vandrey, an associate professor of psychiatry and behavioral sciences at Johns Hopkins Medicine who researches cannabis, said they sympathize with parents of sick children.
They also said they had heard many testimonials about cannabidiol products, and some may be working, but they can't prove it yet.
There are ongoing trials of cannabidiol products for childhood seizure disorders, Vandrey said. Until there are more results, he recommended families talk to their doctors about joining a study or obtaining a special federal exemption called "compassionate use" to access cannabidiol under strict quality controls.
He also recommended parents seek guidance from their doctors, who have legal protections to speak with patients about cannabis.
"I don't want to say that patients can or can't get benefit – it's just that there is risk involved," Vandrey said. "We don't know when you buy something online if it's manufactured carefully and consistently or even has the medicine in it. ...
"My take-home message is we need oversight of these products and we need a better understanding of them. Recommending their use without that is poor medicine."
Uncertainty, though, is familiar to parents of children with intractable epilepsy. Roughly a third of epileptic children don't respond to medical treatment, and it's common for those patients to run through a roster of drugs that don't keep seizures at bay.
Lukas Inman's epilepsy falls into this category, as does the condition of Chuck and Jennifer Porcari's 9-year-old daughter, who has taken a half-dozen different drugs over the past five years.
"It's like your kid is a crash test dummy," Chuck Porcari said.
The Porcaris want to keep their daughter's first name private to protect her identity, but they've become public activists pushing to prevent any further delays.
Jennifer Porcari took a year-long sabbatical from her job as a union organizer to research how to dose and administer medical marijuana to her daughter. Eight months later, the family said they're still waiting for the opportunity.
"It's not a miracle cure," Chuck Porcari said of the drug. "We don't know if it will work. We just want to try it."
His daughter suffers seizures that cause her to freeze for five seconds at a time, as many as 20 or 30 times a day. Unless you knew to look for the signs, her parents say, you wouldn't notice. Her teachers can't tell, and often don't stop instruction while she's undergoing a seizure, so the intermittent pauses have made learning challenging.
Frustrated by the delays and pharmaceuticals that her parents say put a "mask" and "haze" on her personality, the Porcaris started giving their daughter hemp oils that have helped reduce seizures and introduced them to a new version of their little girl.
"It's almost to the point we didn't know who our kid was," Jennifer Porcari said.
The family lives in Cheverly. They could move just three-quarters of a mile to Washington, where medical marijuana has been available since July 2014.
"We're Marylanders," she said. "Why should we?"
News Moderator: Katelyn Baker 420 MAGAZINE ®
Full Article: Parents Seek Alternatives Amid Maryland's Medical Marijuana Stall
Author: Erin Cox
Photo Credit: Amy Davis
Website: Capital Gazette
Jenny and Alex Inman had helped reshape Maryland's medical marijuana laws as parent-advocates, telling lawmakers the drug held promise to tamp down Lukas' frequent and sometimes paralyzing seizures. The boy, then 15, suffers from Lennox-Gastaut Syndrome, a form of treatment-resistant epilepsy that surgery and drugs had failed to control.
The political fight was won, but their son's condition worsened before they could reap the benefits. Lukas had lost teeth in falls from increasingly debilitating seizures. His IQ was dropping further, a consequence of years of brain trauma. Another medication began to fail them, and he was out of school more often than he attended.
"We just felt like we couldn't wait," Jenny Inman said.
With Maryland's medical marijuana market still years away, the Inmans moved from Rockville to Colorado Springs, Colo. They are medical refugees in a state where doctors and parents had for years extolled the benefits of cannabis oil for epileptics.
"If the choice is cut your kid's head open or try an oil, you try an oil," Alex Inman said.
Maryland passed a medical marijuana program in 2013, but it has been one of the slowest states in the nation to allow the product to reach the market. The General Assembly has modified the program every year, and now is weighing more regulatory changes, which the state's Medical Cannabis Commission says will cause further delays.
As the years rolled by, the Inmans and other potential consumers have left the state. Others, after consulting their pediatricians, have found solutions outside the legal medical marijuana market. Some get by with what they consider half-measures – dosing their children with hemp oils and waiting for Maryland's cannabis industry to launch.
The Maryland Medical Cannabis Commission, charged with setting up and regulating the new industry, crafted a program that attracted applications from more than three times as many businesses than they expected to grow, process and dispense the drug.
The onslaught slowed the initial approval of preliminary licenses. The process is now subject to three lawsuits and a half-dozen bills aimed at changing the commission or the licensing system it implemented.
Commissioners say they're about to launch the program if there are no further delays: the panel is prepared to issue final licenses and expects dispensaries will open this summer.
"Eleventh hour legislative changes to the program, at this very late stage in the process, would cause serious detrimental delays impacting sick people getting their medicine," Dr. Paul Davies, who chairs the commission, wrote in an email.
Before Lukas Inman's seizures started at 3, his IQ was 130, his parents say, and they enrolled him in a program for the gifted. Two weeks ago, it was 59, a number his parents celebrated because it had held steady from four years ago, and marked the first time it had not dropped by 10 to 20 points from the previous test.
Looking back, the Inmans are pleased they didn't linger in Maryland.
A year after Lukas started using cannabis oils in Colorado, the frequency of his seizures declined by 60 percent, to less than 30 a month. His parents weaned him off most other pharmaceuticals, which they said dulled his personality.
He's in a special education program at a public school in Colorado. He wears a helmet, but when he's not seizing he can communicate and attend school.
"We made the right choice," Alex Inman said. "It means he goes to school a lot more. It means that he's able to talk a lot more. His eyes are brighter, and he can laugh with us at the dinner table."
Not all patients have to move to access some form of oils containing cannabidiol, or CBD. They are easy to find online, and have become popular with people with disorders that cause seizures.
That's how Casandra Stephan first discovered hemp oils: Googling seizure remedies on her phone while waiting for her 2-year-old daughter, Lillyann Baker, to convulse again.
"You feel helpless," Stephan said.
Stephan cares for Lillyann and her two other young children in a Dundalk apartment. The middle child suffered a severe brain injury when a family member dropped her at seven weeks.
Stephan had no interest in waiting for a medical marijuana industry to launch, trusting instead an online gallery of parents attesting to the benefits of a "natural" oil she believed was legal to buy online.
After six false starts, Stephan said she settled on a brand – HempMeds – that reduced Lillyann's seizures within four days. It can cost as much as $400 for a month's supply, company officials said.
Stephan said the oils she found online stopped the seizures. More than a year later, they haven't returned.
With the consent of her doctors, Stephan said, Lillyann has been weaned off most of the drugs prescribed to limit the seizures. Now, at 3 years old, she can recognize colors, scoot around and play with her older sister and younger brother. She has advanced to the skill set of a 6-month-old, which Stephan said is something doctors predicted would be unlikely after the brain injury.
The legality of the hemp oil Stephan uses is in dispute. She and HempMeds say it is legal to buy and sell products made from hemp. They liken the transaction to the legal production of textiles from hemp.
The U.S. Drug Enforcement Agency issued a rule in December making clear it considers all "marijuana extracts" a controlled substance. A DEA spokesman would not comment further on the rule.
Stephan says she was slightly concerned about the legal ramifications of buying the hemp oil – "I don't want to lose my babies," she said – but seized the opportunity to help her daughter.
"I would have fought until there was no breath in me," she said.
She said state Child Protective Services opened an investigation after she started giving Lillyann doses of the oil, then closed it.
A spokeswoman for the state Department of Human Resources said she could not confirm or deny a Child Protective Services investigation.
Even when Maryland's medical marijuana industry opens, Stephan sees no reason to consult a dispensary or shift from ordering the oils online.
"We found something that works," she said. "We're not going to do anything differently."
Cannabis researchers and federal regulators have warned consumers that there is no way of knowing what is in cannabidiol products.
The U.S. Food and Drug Administration sent eight warning letters in 2016 and six in 2015 telling firms to stop marketing their cannabidiol products to treat diseases for which they are not approved. Further, the FDA tested several products and found many did not contain what they claimed.
HempMeds was not listed among the firms.
Despite a lack of comprehensive research on the effects of cannabis medications on epilepsy, the anecdotal evidence persuaded politicians across the country to approve it.
Twenty-eight states and the District of Columbia have broad medical marijuana programs. Another 16 have limited ones, and all but one of those – Louisiana's – specifically allows medical marijuana to be used to treat seizure disorders or intractable epilepsy, according to the National Council of State Legislatures.
Daniele Piomelli, a professor of anatomy and neurobiology at the University of California, Irvine, medical school and editor-in-chief of Cannabis and Cannabinoid Research, said a study not yet published showed cannabidiol might help people with Dravet syndrome, a type of epilepsy that doesn't respond well to seizure medications. Another study showed it could help the symptoms of schizophrenia.
But far more research is needed, he said.
"Public opinion has way surpassed scientific knowledge of CBD," Piomelli said. "A lot of people buy oils rich in CBD in hopes that maybe they see something. People believe in science and that's a wonderful thing, but they think we know more about CBD than we do."
Piomelli and Ryan Vandrey, an associate professor of psychiatry and behavioral sciences at Johns Hopkins Medicine who researches cannabis, said they sympathize with parents of sick children.
They also said they had heard many testimonials about cannabidiol products, and some may be working, but they can't prove it yet.
There are ongoing trials of cannabidiol products for childhood seizure disorders, Vandrey said. Until there are more results, he recommended families talk to their doctors about joining a study or obtaining a special federal exemption called "compassionate use" to access cannabidiol under strict quality controls.
He also recommended parents seek guidance from their doctors, who have legal protections to speak with patients about cannabis.
"I don't want to say that patients can or can't get benefit – it's just that there is risk involved," Vandrey said. "We don't know when you buy something online if it's manufactured carefully and consistently or even has the medicine in it. ...
"My take-home message is we need oversight of these products and we need a better understanding of them. Recommending their use without that is poor medicine."
Uncertainty, though, is familiar to parents of children with intractable epilepsy. Roughly a third of epileptic children don't respond to medical treatment, and it's common for those patients to run through a roster of drugs that don't keep seizures at bay.
Lukas Inman's epilepsy falls into this category, as does the condition of Chuck and Jennifer Porcari's 9-year-old daughter, who has taken a half-dozen different drugs over the past five years.
"It's like your kid is a crash test dummy," Chuck Porcari said.
The Porcaris want to keep their daughter's first name private to protect her identity, but they've become public activists pushing to prevent any further delays.
Jennifer Porcari took a year-long sabbatical from her job as a union organizer to research how to dose and administer medical marijuana to her daughter. Eight months later, the family said they're still waiting for the opportunity.
"It's not a miracle cure," Chuck Porcari said of the drug. "We don't know if it will work. We just want to try it."
His daughter suffers seizures that cause her to freeze for five seconds at a time, as many as 20 or 30 times a day. Unless you knew to look for the signs, her parents say, you wouldn't notice. Her teachers can't tell, and often don't stop instruction while she's undergoing a seizure, so the intermittent pauses have made learning challenging.
Frustrated by the delays and pharmaceuticals that her parents say put a "mask" and "haze" on her personality, the Porcaris started giving their daughter hemp oils that have helped reduce seizures and introduced them to a new version of their little girl.
"It's almost to the point we didn't know who our kid was," Jennifer Porcari said.
The family lives in Cheverly. They could move just three-quarters of a mile to Washington, where medical marijuana has been available since July 2014.
"We're Marylanders," she said. "Why should we?"
News Moderator: Katelyn Baker 420 MAGAZINE ®
Full Article: Parents Seek Alternatives Amid Maryland's Medical Marijuana Stall
Author: Erin Cox
Photo Credit: Amy Davis
Website: Capital Gazette