Austin, Texas | Alexis Bortell is your pretty average kid, except for one thing; she is a 9-year-old medical marijuana advocate.
When Alexis first started having seizures in her south Texas home back in July of 2013, her family knew that the course of her life had just changed. Her father Dean, a disabled Navy veteran said describes the first time she had a seizure, “I look over and Alexis has literally gone vertical. She’s stiff as a board and mom’s holding her. We get her down on the couch and she’s shaking.”
The family rushed Alexis to a nearby hospital where doctors informed the family that she suffers from epilepsy. Alexis was prescribed to some prescription drugs which proved ineffective. It’s not that the medications just didn’t work; Alexis’ dad described her use of the prescription Carbatrol as, “like throwing gasoline on a fire.” Her seizures when from nightly to around-the-clock, giving Alexis spasms, tremors, and altering her bubbly personality.
Doctors confirmed that the medications weren’t right for Alexis and the family weaned her off of them; keeping reserves only for emergency situations.
The turning point for the Bortell family was when they caught a CNN special with Dr. Sanjay Gupta talking about some of the uses of medical marijuana. The non-psychoactive oils and tinctures derived from the cannabis plant are widely known to reduce seizures in patients suffering from epilepsy without the harsh side effects of prescription medications.
Soon after, the Bortell family began consulting specialists and visiting Colorado where access to the non-psychoactive CBD oil is legal. Alexis quickly qualified for a medical marijuana card in the state of Colorado and began taking the cannabis derived medication.
The problem now is that the Bortell family still resides in Texas where the CBD oil is illegal and carries harsher penalties than regular pot due to it’s concentrated form. The family is worried that the penalties for possession of the life-saving medicine could lead to legal issues, especially since they would be crossing state lines with the drug.
“I don’t wanna leave Texas. I’m a Texas girl!”
This hasn’t stopped Alexis and her family though. Alexis has taken to the streets and even started and online campaign to make Texans aware of her dilemma. Alexis and her family recently appeared on local TV stations spreading their message and are publishing Youtube videos to get the word out.
Alexis is hoping to convince Texas residents and lawmakers alike that medical marijuana has a place in Texas. On Tuesday she joined a group of activists at the Texas stated capitol to deliver her message to the state.
For the Bortell family, time is of the essence. If lawmakers can’t make a sensible medical marijuana policy that would help Alexis to experience a bright future, the family will be forced to leave the state. Dean Bortell said, “When the gavel falls in May, we’ll know if we have to leave Texas.”
The amount of research that has been conducted on the efficacy and use of cannabis in the treatment of different forms of epilepsy and other seizure disorders far under-represents the public demand for such information. Although more research does need to be completed, cannabis therapy has proven to be quite successful in the treatment of many different forms of debilitating medical conditions, including childhood and adult forms of epilepsy.
It is the non-psychoactive cannabinoid found in marijuana, cannabidiol (CBD), that has demonstrated the ability to lessen the frequency and severity of seizures in patients of all ages. Parents of children suffering from such conditions in the United States, South America and the rest of the world have organized many rallies to draw attention to the fact that medical marijuana should be available globally. In many cases, CBD oil has been the only treatment that has worked successfully for patients.
After a recent protest in South America’s largest country, the Brazilian government’s Health Surveillance Agency announced that legalizing medical marijuana will be discussed in January 2015. The small protest that sparked this response from the government was in support of legalizing CBD oil to treat epilepsy. This protest came after a decision made by the Federal Medical Council in early December, which approved neurologists and psychiatrists to recommend cannabidiol oil to treat children and teens suffering from epilepsy in Brazil. This authorization came with the stipulation that these patients must have been unsuccessfully treated with the more commonly prescribed pharmaceuticals. This change did not, however, come with any legislation to allow the production or distribution of such medication.
Most seeking cannabis therapy in Brazil obtain their medicine through a secret society of cultivators who make the cannabidiol oil, and then donate it to patients. According to one mom’s statement to the Associated Press, this band of kind, care-giving outlaws will not even allow for patients to cover the cost of shipping. All CBD oil is provided at no cost to the patient. Although these families of patients suffering from epilepsy are excited about the recent measure allowing doctors to prescribe CBD oil, they do not want to have to receive medicine illegally.
Several trials to study the efficacy of CBD in the treatment of epilepsy have just recently been approved in the United States, and the United Kingdom. If medical marijuana is legalized in Brazil, perhaps this will open doors to more medical studies and research on this subject in the future.
Modesto, CA | Modesto parents stood up this week to fight for access to the medical marijuana that they use in the treatment of their epileptic children. On Monday evening the Modesto City Council opened a dialogue discussing restrictions for growing medical marijuana. Proposed rules would have restricted parents who have children from growing at home, as well as limiting medical marijuana gardens to secure indoor grows in single-family dwellings.
This posed some serious problems for families who depend on this medicine to treat their ailing children. The non-psychoactive CBD that parents extract from the plants is much cheaper to produce at home. Depending on stores and other caretakers can be costly.
Katharine Reynolds has an 18-month-old-son, Case, who suffers from a rare disorder called 5Q14.3 Microdeletion Syndrome. Her family depends on their CBD oil to reduce her son’s seizures hundreds of seizures per day, mitigate pain, maintain his quality of life. Reynolds told Fox News 40 that, “Abusing any drug is not right, but when you’re not abusing them and you’re using them to help your children, I think that’s a totally different thing.”
“He actually responds to our voice now, and he’s just much more at peace” – Katharine Reynolds
The Reynolds family doesn’t produce their own CBD oil, citing the difficulty in growing the medicine. Case’s father Mike Reynolds makes the hour-and-a-half drive to Oakland once a month to buy the medicine. Mike says, “If you would have seen him a year ago, he was a completely different kid.” For the Reynolds family, the drive over to Oakland is well worth it, but some parents want to be able to produce the medicine at home.
Mike Reynolds said Monday, “I get that there’s people abusing it, I get that there’s problems but at the same time, there are people that really don’t. I would say we’re probably the polar opposite of what you think about cannabis.”
Luckily, Modesto City Council declined the proposed ordinance citing families such as the Reynolds’ who would be adversely affected. Over 20 people attending the Monday night meeting to speak against the proposed restrictions.
Photo Credit: Fox 40
Back in November, Fox News 13 of Memphis, TN reported on a 3-year-old child that had exhausted her options in search of a treatment for her debilitating seizures. That is, except for one medicine that her family couldn’t get access to due to state and federal laws that block access to the medicine.
By age 3 Chloe had suffered from more than 75,000 seizures, affecting the development of muscles, coordination, and cognition. Suffering from around 100 seizures per day, doctors tried everything in the book to heal young Chloe, including multiple surgeries at Le Bonheur Children’s Hospital and 20 different types of medication. In November her family reported that she was taking 5 medications 3 times a day including medications like Methadone. One of the medications forced Chloe’s parents to sign a waiver due to a severe risk of blindness as a side effect.
Back in January Chloe’s grandmother, Gail Grauer, went in front of state legislators to ask for access to the non-psychoactive form of cannabis oil. Legislators soon passed a bill allowing clinical research from Vanderbilt University in conjunction with Tennessee Tech to grow and distribute the medicine to sick children in need. However, Federal regulations blocked this course of action putting Chloe and her family in a life-threatening bind.
In November, Chloe’s mother, Elizabeth Peden said, “You want to do anything, you would do anything, you would literally do anything to save the life of your child.” Her father Shea added, “One day we will be able to try it and we will be able to get those smiles and those little laughs that a lot of people to take for granted.” Tragically, that day never came for Chloe.
On December 10, Fox News Memphis reported that Chloe Grauer died waiting for the treatment she so desperately needed. Sadly, many parents around the country could be facing this life-threatening scenario with their hands tied by the Federal government. In the United States alone, around 3 million individuals suffer from epilepsy.
At the Federal level traction is picking up, but children who are dying for a cure can’t wait for the slow and politicized legislative process to creep along. In July, Pennsylvania Representative Scott Perry introduced a bill that would allow legalize the non-psychoactive CBD oil at the national level. The bill, H.R.5226 – Charlotte’s Web Medical Hemp Act of 2014 has just begun to gain traction in Congress and will likely be subject to a vote in early 2015. So far there are a total of 38 cosponsors on the bill.
If you would like to take action you can find your district’s Representative here. Write your Congressional leaders and urge them to jump on board with the bill before another child’s life is shamelessly lost due to an inhumane and undignified Federal law.
via: Fox News 13
The number of clinical studies that have been conducted on the use of cannabis oil in the treatment of different forms of epilepsy and other seizure disorders far under-represents the public want and need for such research. Parents of children suffering from such conditions in the United States, South America and the rest of the world have even rallied to draw attention to this crime against humanity. Being granted cannabis research permission is the United States is nearly impossible due to the current classification of marijuana as a Schedule I drug under the Controlled Substances Act. Until the federal government removes cannabis from this classification all together, like alcohol, more people, including children, will continue to suffer.
Last year, a coalition of parents with children suffering from different forms of epilepsy and seizure disorders was able to convince legislators in Alabama to approve a bill allowing such research. The study is to be conducted at the University of Alabama at Birmingham, and now, the Food and Drug Administration is officially approving the study.
Permission for this research has been granted to the UAB Neurology department, and reportedly aims to test the effectiveness of the marijuana cannabinoid, known as cannabidiol (CBD), as a treatment for seizure disorders. This study will be different than others conducted because there will be no placebo group. All participants will receive the cannabidiol rich extract during clinical trials. However, there is a catch. A university representative told ABC 3340 that the FDA approved the study with a few alterations. These modifications are expected to be discussed by a review board in January 2015, and hopefully the study will be able to begin soon thereafter.
photo credit: dr-bonni.bitnamiapp