Robert Celt
New Member
Six-year-old Tristan Stiffler could die before the state legislature approves cannabidiol (CBD), an extract of the marijuana plant, for the treatment of his epilepsy.
His grandmother, Pam Coats, a former Delaware County correctional officer, hopes Tristan lives a long life. But she fears that "if they don't legalize this and get him and other children like him off all these medicines that destroy his organs, he's not going to be here a year from now."
Two dozen states have enacted medical marijuana laws and more than a dozen others have approved CBD-only legislation. Indiana is not among them, but bills are pending in the current session of the Indiana General Assembly that could authorize CBD clinical trials or legalize CBD for the treatment of uncontrolled seizures.
Tristan is autistic and was born with brain damage. He's suffered from seizures since he was six months old. He is taking phenobarbital, Keppra, Topiramate, Atarax, Carnitor, Neurontin, Seroquel and Diazepam rectally during emergencies, and he still experiences five or six breakthrough seizures a week.
"It's just hard to watch your child go through this and there is nothing you can do," says Tristan's mother, Melissa, who takes care of him full time. "I mean, it's really stressful. It's hard when he seizes and there is nothing we can do, and we know there is CBD oil that studies have shown that it does help, and our hands are kind of tied because it is not legal where we are, and we can't just up and move him and all our other children to a state that does do it. We checked into it, and you can't go to another state and get it prescribed and bring it back to Indiana. You can get in trouble. It's pretty much our last chance to try to get him into a clinical trial or get legislators to make it legal for epileptic children to be able to have this medication."
Tristan's liver is not functioning normally because of the phenobarbital. His brain size is normal for a child his age, but his head is larger than that of the typical six-year-old. As a result, when he has a seizure that lasts more than three minutes, "he risks having an outcome of an infant being shaken because his brain can move against his skull," Melissa said.
Accidentally bumping his head can trigger a seizure in the 48-pound child. Tristan has been fitted for multiple seizure helmets but is old enough now to know how to take them off. "It's a fight to keep the helmet on," his mother said.
"If this CBD can get him off all of these medications, he can be a normal little boy," said Coats, Tristan's grandmother. "He loves being outside, whether it's 5 degrees or 100 degrees. But we can't let him outside in the summer. He can't sweat because of one of the medications he's on. His temperature goes up to 102 or 103 if he plays outside like a normal child."
Coats was holding her grandson once when he had an absence seizure. "It's like he's brain dead," she said. "His eyes are open but he doesn't move them or his body. When he comes out of it, his speech is slurred and he can't walk. He seems to me to be scared when he comes out of it. It's very frightening."
Nearly a third of the 60,000 Indiana residents living with epilepsy have uncontrolled seizures, according to the Epilepsy Foundation of Indiana.
Republican state Sen. Jim Tomes is a Vietnam veteran, retired truck driver, Second Amendment Patriot and a Catholic who represents a district in the Evansville area. He doesn't support medical marijuana because of the abuse potential. But he has authored a CBD legalization bill.
"CBD provides real success," Tomes said. "I have talked to parents who used it and it has worked. It absolutely reduced seizures so kids can live a normal life or a lot better life than they're living now. These are families dealing with ... almost unimaginable situations. I've got one young mom in my district, I met her and her little girl who has 50 and 75 seizures a day."
These victims can't wait a year or two for clinical trials to be completed, Tomes said. "My bill will move this a little faster and open this door a lot sooner. My first and foremost goal is to try to get Indiana to become a state where families who have terrible situations don't have to run to Colorado or break the law for their kids. Some have spent fortunes to set up residence in Colorado and about bankrupted themselves." Such families have been called "medical refugees."
Unlike the main psychoactive cannabinoid in marijuana, tetrahydrocannabinol (THC), CBD does not produce euphoria or intoxication.
Republican state Sen. Jean Leising, a farmer, travel agent and retired nurse from Franklin County, chaired the Interim Study Committee on Agriculture and Natural Resources that examined CBD last fall.
"I reached out to the Indiana State Medical Association to find physicians to come and testify for and against CBD," she told The Star Press last week. "You just can't find a real neurologist who can come forward and speak for this stuff. I could not find a physician we could even Skype who wanted to stand behind the use of CBD oil. Frankly, there were no medical doctors we could find that even want to prescribe it. So that makes you pretty nervous."
Maybe Hoosier neurologists are afraid to speak for CBD because they feel threatened by prosecutors, says Lola Smith, a Lafayette resident whose grandson has uncontrolled seizures. The Indiana Prosecuting Attorneys Council has said that legalizing CBD oil would effectively legalize hash oil (because both contain some THC) and lead to an explosion in hash oil labs.
Leising has sponsored a bill to legalize a federally approved clinical trial of synthetic CBD in Indiana. The legislative study committee was told that Keith Ridel, a pediatric neurologist at Indianapolis-based Josephson Wallack Munshower (JWM) Neurology, was planning to open enrollment in early 2016. The trial on a limited number of children reportedly is blind, meaning some children will receive a placebo. Leising said her bill would immunize Ridel from criminal liability from any "overzealous prosecutors."
Dearborn/Ohio County Prosecutor Aaron Negangard told Leising's committee that medical marijuana could open the door to legalization of marijuana, a gateway drug, and that medical marijuana implies that marijuana is safe to use.
Nora Volkow, director of the National Institute on Drug Abuse, told the U.S. Senate Drug Caucus last summer that, while there are promising preliminary data, the scientific literature is currently insufficient to either prove or disprove the efficacy and safety of CBD in patients with epilepsy.
The U.S. Food and Drug Administration says it understands that parents are trying to find treatments for their children's medical conditions, but warns that the use of untested drugs can have unpredictable and unintended consequences. CBD is not an FDA-approved drug.
Obtaining CBD via the medical marijuana, aka artisanal marijuana, route in states where it's legal raises concerns including the possible presence of dangerous amounts of THC, pesticides, fungus and mold; lack of a consistent supply of CBD; and unverified levels of CBD in the product, Jennifer Donaldson, a clinical pediatric specialty pharmacist at Riley Hospital for Children, told the interim study committee.
After attending a Legislative Ag Chairs Summit in Denver last weekend, Leising, whose district includes southern Henry County, became more convinced than ever that "our best bet to help kids and families try to move forward is to do whatever we can to encourage Indiana physicians to participate in approved (CBD) trials" – not rush CBD into the market.
That's because in Denver – the largest city in Colorado, a state that has legalized marijuana for personal use and has enacted medical marijuana laws – Leising saw a "Happy Hour" sign in a medical marijuana retail store; she saw more homeless people, many from out of town, living on the street under garbage bags than in any other city she has visited; she learned a small number of doctors have turned their practices into medical marijuana practices and "all of the regular doctors" are not participating; she learned Colorado doesn't know how to deal with driving under the influence of marijuana; she learned recreational marijuana users are registering as medical marijuana patients to pay less in taxes; and she came away with uncertainty about the levels of THC in medical marijuana.
"I don't want us to give already sick kids high levels of THC and the child gets worse rather than better," Leising said. THC may cause seizures.
"I don't think Indiana is ready for medical marijuana or recreational marijuana, and I think the verdict is still out in states that have legalized these things," Leising said. "They seem so overwhelmed. It's a mess."
Sen. Tomes' bill would regulate industrial hemp growers and manufacturers that process CBD, require the state seed commissioner to establish testing standards for CBD, establish a registry for the use of CBD from hemp in the treatment of children with uncontrolled epilepsy, and provide civil and criminal immunity for doctors, growers and manufacturers if certain conditions are met.
Tomes says you only have to watch TV ads for pharmaceuticals to know that even FDA-approved therapies have real side effects. "Just as there are risks with any treatment, every day without seizure control is a risk to life," the Epilepsy Foundation reports.
If enough lawmakers look into the eyes of severely epileptic children and the eyes of their parents, Tomes' bill will pass, he says. "Talking to a person who is affected by this, seeing the sincerity in their eyes and the tone of their voice and looking them in the face is very powerful, because we are human beings," he said.
Leising has looked into those eyes, including those of a mother whose 17-year-old son "has never really been able to speak beyond a couple of words, and he is as damaged from birth on as you can get, and she thinks he is worsening and she is frustrated. They need help, no doubt. But I don't want to do anything to cause further harm."
While CBD offers hope, it needs to remembered that "these are only anecdotal reports, and robust scientific evidence for the use of marijuana is lacking," the American Epilepsy Society told the interim study committee.
But the Epilepsy Foundation told the committee: "If a patient and their health care professionals feel that the potential benefits of medical marijuana for uncontrolled epilepsy outweighs the risks, then families need to have that legal option now – not in five years or 10 years. For people living with severe uncontrolled epilepsy, time is not on their side. People with uncontrolled seizures live with the continual risk of serious injuries and loss of life."
News Moderator: Robert Celt 420 MAGAZINE ®
Full Article: Indiana: Could Marijuana Extract Save Tristan?
Author: Seth Slabaugh
Contact: IndyStar
Photo Credit: Jordan Kartholl
Website: IndyStar
His grandmother, Pam Coats, a former Delaware County correctional officer, hopes Tristan lives a long life. But she fears that "if they don't legalize this and get him and other children like him off all these medicines that destroy his organs, he's not going to be here a year from now."
Two dozen states have enacted medical marijuana laws and more than a dozen others have approved CBD-only legislation. Indiana is not among them, but bills are pending in the current session of the Indiana General Assembly that could authorize CBD clinical trials or legalize CBD for the treatment of uncontrolled seizures.
Tristan is autistic and was born with brain damage. He's suffered from seizures since he was six months old. He is taking phenobarbital, Keppra, Topiramate, Atarax, Carnitor, Neurontin, Seroquel and Diazepam rectally during emergencies, and he still experiences five or six breakthrough seizures a week.
"It's just hard to watch your child go through this and there is nothing you can do," says Tristan's mother, Melissa, who takes care of him full time. "I mean, it's really stressful. It's hard when he seizes and there is nothing we can do, and we know there is CBD oil that studies have shown that it does help, and our hands are kind of tied because it is not legal where we are, and we can't just up and move him and all our other children to a state that does do it. We checked into it, and you can't go to another state and get it prescribed and bring it back to Indiana. You can get in trouble. It's pretty much our last chance to try to get him into a clinical trial or get legislators to make it legal for epileptic children to be able to have this medication."
Tristan's liver is not functioning normally because of the phenobarbital. His brain size is normal for a child his age, but his head is larger than that of the typical six-year-old. As a result, when he has a seizure that lasts more than three minutes, "he risks having an outcome of an infant being shaken because his brain can move against his skull," Melissa said.
Accidentally bumping his head can trigger a seizure in the 48-pound child. Tristan has been fitted for multiple seizure helmets but is old enough now to know how to take them off. "It's a fight to keep the helmet on," his mother said.
"If this CBD can get him off all of these medications, he can be a normal little boy," said Coats, Tristan's grandmother. "He loves being outside, whether it's 5 degrees or 100 degrees. But we can't let him outside in the summer. He can't sweat because of one of the medications he's on. His temperature goes up to 102 or 103 if he plays outside like a normal child."
Coats was holding her grandson once when he had an absence seizure. "It's like he's brain dead," she said. "His eyes are open but he doesn't move them or his body. When he comes out of it, his speech is slurred and he can't walk. He seems to me to be scared when he comes out of it. It's very frightening."
Nearly a third of the 60,000 Indiana residents living with epilepsy have uncontrolled seizures, according to the Epilepsy Foundation of Indiana.
Republican state Sen. Jim Tomes is a Vietnam veteran, retired truck driver, Second Amendment Patriot and a Catholic who represents a district in the Evansville area. He doesn't support medical marijuana because of the abuse potential. But he has authored a CBD legalization bill.
"CBD provides real success," Tomes said. "I have talked to parents who used it and it has worked. It absolutely reduced seizures so kids can live a normal life or a lot better life than they're living now. These are families dealing with ... almost unimaginable situations. I've got one young mom in my district, I met her and her little girl who has 50 and 75 seizures a day."
These victims can't wait a year or two for clinical trials to be completed, Tomes said. "My bill will move this a little faster and open this door a lot sooner. My first and foremost goal is to try to get Indiana to become a state where families who have terrible situations don't have to run to Colorado or break the law for their kids. Some have spent fortunes to set up residence in Colorado and about bankrupted themselves." Such families have been called "medical refugees."
Unlike the main psychoactive cannabinoid in marijuana, tetrahydrocannabinol (THC), CBD does not produce euphoria or intoxication.
Republican state Sen. Jean Leising, a farmer, travel agent and retired nurse from Franklin County, chaired the Interim Study Committee on Agriculture and Natural Resources that examined CBD last fall.
"I reached out to the Indiana State Medical Association to find physicians to come and testify for and against CBD," she told The Star Press last week. "You just can't find a real neurologist who can come forward and speak for this stuff. I could not find a physician we could even Skype who wanted to stand behind the use of CBD oil. Frankly, there were no medical doctors we could find that even want to prescribe it. So that makes you pretty nervous."
Maybe Hoosier neurologists are afraid to speak for CBD because they feel threatened by prosecutors, says Lola Smith, a Lafayette resident whose grandson has uncontrolled seizures. The Indiana Prosecuting Attorneys Council has said that legalizing CBD oil would effectively legalize hash oil (because both contain some THC) and lead to an explosion in hash oil labs.
Leising has sponsored a bill to legalize a federally approved clinical trial of synthetic CBD in Indiana. The legislative study committee was told that Keith Ridel, a pediatric neurologist at Indianapolis-based Josephson Wallack Munshower (JWM) Neurology, was planning to open enrollment in early 2016. The trial on a limited number of children reportedly is blind, meaning some children will receive a placebo. Leising said her bill would immunize Ridel from criminal liability from any "overzealous prosecutors."
Dearborn/Ohio County Prosecutor Aaron Negangard told Leising's committee that medical marijuana could open the door to legalization of marijuana, a gateway drug, and that medical marijuana implies that marijuana is safe to use.
Nora Volkow, director of the National Institute on Drug Abuse, told the U.S. Senate Drug Caucus last summer that, while there are promising preliminary data, the scientific literature is currently insufficient to either prove or disprove the efficacy and safety of CBD in patients with epilepsy.
The U.S. Food and Drug Administration says it understands that parents are trying to find treatments for their children's medical conditions, but warns that the use of untested drugs can have unpredictable and unintended consequences. CBD is not an FDA-approved drug.
Obtaining CBD via the medical marijuana, aka artisanal marijuana, route in states where it's legal raises concerns including the possible presence of dangerous amounts of THC, pesticides, fungus and mold; lack of a consistent supply of CBD; and unverified levels of CBD in the product, Jennifer Donaldson, a clinical pediatric specialty pharmacist at Riley Hospital for Children, told the interim study committee.
After attending a Legislative Ag Chairs Summit in Denver last weekend, Leising, whose district includes southern Henry County, became more convinced than ever that "our best bet to help kids and families try to move forward is to do whatever we can to encourage Indiana physicians to participate in approved (CBD) trials" – not rush CBD into the market.
That's because in Denver – the largest city in Colorado, a state that has legalized marijuana for personal use and has enacted medical marijuana laws – Leising saw a "Happy Hour" sign in a medical marijuana retail store; she saw more homeless people, many from out of town, living on the street under garbage bags than in any other city she has visited; she learned a small number of doctors have turned their practices into medical marijuana practices and "all of the regular doctors" are not participating; she learned Colorado doesn't know how to deal with driving under the influence of marijuana; she learned recreational marijuana users are registering as medical marijuana patients to pay less in taxes; and she came away with uncertainty about the levels of THC in medical marijuana.
"I don't want us to give already sick kids high levels of THC and the child gets worse rather than better," Leising said. THC may cause seizures.
"I don't think Indiana is ready for medical marijuana or recreational marijuana, and I think the verdict is still out in states that have legalized these things," Leising said. "They seem so overwhelmed. It's a mess."
Sen. Tomes' bill would regulate industrial hemp growers and manufacturers that process CBD, require the state seed commissioner to establish testing standards for CBD, establish a registry for the use of CBD from hemp in the treatment of children with uncontrolled epilepsy, and provide civil and criminal immunity for doctors, growers and manufacturers if certain conditions are met.
Tomes says you only have to watch TV ads for pharmaceuticals to know that even FDA-approved therapies have real side effects. "Just as there are risks with any treatment, every day without seizure control is a risk to life," the Epilepsy Foundation reports.
If enough lawmakers look into the eyes of severely epileptic children and the eyes of their parents, Tomes' bill will pass, he says. "Talking to a person who is affected by this, seeing the sincerity in their eyes and the tone of their voice and looking them in the face is very powerful, because we are human beings," he said.
Leising has looked into those eyes, including those of a mother whose 17-year-old son "has never really been able to speak beyond a couple of words, and he is as damaged from birth on as you can get, and she thinks he is worsening and she is frustrated. They need help, no doubt. But I don't want to do anything to cause further harm."
While CBD offers hope, it needs to remembered that "these are only anecdotal reports, and robust scientific evidence for the use of marijuana is lacking," the American Epilepsy Society told the interim study committee.
But the Epilepsy Foundation told the committee: "If a patient and their health care professionals feel that the potential benefits of medical marijuana for uncontrolled epilepsy outweighs the risks, then families need to have that legal option now – not in five years or 10 years. For people living with severe uncontrolled epilepsy, time is not on their side. People with uncontrolled seizures live with the continual risk of serious injuries and loss of life."
News Moderator: Robert Celt 420 MAGAZINE ®
Full Article: Indiana: Could Marijuana Extract Save Tristan?
Author: Seth Slabaugh
Contact: IndyStar
Photo Credit: Jordan Kartholl
Website: IndyStar
