The following is a personal story from a woman who suffers from Crohn’s disease and suffers much less thanks to medical cannabis, and Shona Banda…
To Medical Marijuana 411, i would first like to say that Shona Banda
saved my life…
I am a 26 year old living in NH and I’ve had Crohn’s Disease for 10 years now. I have been on all the medications that a normal doctor would prescribe for a CD patient, I’ve been on Remicade, chemo twice – once when I was 18 then again this last year.
Remicade made me violently sick and i was searching for a way to not have to stay on it, but i just couldn’t figure it out.
Last summer I learned about the MAP infection theory in Crohn’s and started taking probiotics and other natural remedies, but they never took the problem away, it was just like smoking marijuana, it eased the symptoms, but nothing was really fixed.
One day in april, my sister called me and told me about Shona’s video online and I had to check it out.
I got home and watched her video and did a little research and realized I had to do this.
I had just gone to my doctor, frustrated and upset about the condition I was in, throwing up, well more like dry heaving because I had no appetite, so I barely was eating, and horrible persistent stomach pains in the 2-3 weeks leading up to my next Remicade infusion.
Remicade is administered every 6-8 weeks in a chemo ward. My doctor’s solution was double the dose and get it every six weeks instead of eight.
I was thrilled, actually not really, I was devastated because I knew Remicade has a half life of 30 years! and thats a lot of toxic chemicals they were pumping in to me, but I could think of no other solution, until Shona’s video.
I was an avid smoker for many years to help relieve my symptoms, and it was the only thing i could do besides resorting to narcotics, which thankfully i never did, to relieve my pain and stimulate my appetite. I immediately purchased a vaporizer online and started making my own oil.
I was supposed to have a Remicade infusion on April 25th, I never showed up, I had started my oil regimine just days before that. I have been on oil ever since and found it relieved my nausea almost instantly in a way that smoking could not.
Slowly my days started getting better, and my nights too!
I tell people that before the oil I was running on 40% efficiency, now I am at 90% efficiency and I can’t believe the drastic turnaround I have had.
I still struggle with symptoms of my Crohns as i can only make a little at a time, but baby steps are better than no steps at all!
I live with my sister who does not smoke marijuana and was very skeptical of what I was trying to do, and she is very vocal to me now about how amazing she thinks that I am doing, she can hear my health in the way that I walk, is what she says, I used to struggle to get up and down the stairs, and she could hear me, now, they are just stairs, not an obstacle to my room.
I have thanked Shona for letting the world know this simple and affordable way to heal yourself and I am forever indebted to her. thank you for supporting her and
I look forward to being a member of medical marijuana 411, thank you for spreading truth and kindness to the sick, tired, and hurting people of the world!
– Patient Submitted Story
Crohn’s disease effects over a half million Americans, yet the typical treatment options are less than ideal. Crohn’s is an auto-immune disorder that causes the body’s immune system to attack good gut bacteria causing chronic inflammation of the intestines and many unwanted symptoms. The prescribed treatment options are typically corticosteroids. While they can be successful in treating the disease, corticosteroids suppress the entire immune system leaving the patient with a dangerously weak immune system. For this reason alone, many sufferers of Crohn’s disease search for alternative treatment options. Some, have found that alternative treatment to be marijuana.
A study conducted at Israel’s Meir Medical Center in 2013 was the first placebo controlled study of the effects marijuana has on Crohn’s disease. The study treated eleven subjects with multiple joints per day over a week. Of the eleven subjects, five actually entered remission, and ten of the eleven reported improvement of condition. The ten subjects who said their symptoms had improved also noted that their quality of life had increased, they slept better, and that they had increased appetites. While the lead researchers of the study caution that there is conflicting evidence as to whether cannabis can cure Crohn’s, there is no doubt in their minds that it can improve the lives of people suffering from the disease.
The study is very promising and shows that marijuana can be used to treat the symptoms of Crohn’s. For people with the disease, the fact that marijuana could be an option for even the most simple side effects is huge.
With any disease that can be treated with marijuana, the THC/CBD levels and type of strain can determine the effectiveness of the treatment. To treat the symptoms and side effects of Crohn’s disease, it is suggested by researchers that high THC strains of marijuana work best.Two Typical Joints In the Israeli study, patients were asked to consume the equivalent of two joints a day (likely between .5g and 1g each).
This is a large amount of marijuana for one person to consume in a day and may lead to drowsiness and other unwanted side effects. However, the side effects from the overconsumption of marijuana are more desirable for many than the side effects of traditional corticosteroids, or the symptoms of Crohn’s.
As research progresses, we will begin to find out more about how marijuana can best be used to treat conditions such as Crohn’s. What is undeniable however, is the fact that marijuana can alleviate the unnecessary pain and unwanted side effects of Crohn’s disease.
On January 19, the German Parliament unanimously voted to legalize medical cannabis. “Critically ill people must be cared for in the best possible way,” federal health minister Hermann Gröhe said at the time. “The costs of using cannabis for medicinal purposes will be met by the health insurance companies if the critically ill, if no other form of treatment is effective.”
The law went into effect in March. Patients are now able to receive up to five ounces per month at a cost of $12 per ounce under public health insurance (which covers 90% of Germans). They can take their doctor’s prescription to any licensed apotheke, or pharmacy, to get it filled. Reimbursement will happen via a special fund set up by the government, with an eye to public health insurers then picking up the slack (probably after the five-year trial also mandated by the new law).
More than 1,000 patients have registered with the program. That number is expected to grow to between 5,000 and 10,000 per year for the next several years, depending on how doctors respond to government education efforts and patient demand.
POST-TRAUMATIC STRESS DISORDER (PTSD) IS A MENTAL HEALTH CONDITION THAT’S TRIGGERED BY A TERRIFYING EVENT — EITHER EXPERIENCING IT OR WITNESSING IT.
Post Traumatic Stress Disorder (PTSD) is a disorder characterized by severe emotional and physical reactions related to an earlier trauma. These can include episodes in which flashbacks, nightmares and anxiety impair the sufferer and cause significant distress. Symptoms can include everything from insomnia, aggression, to self harm, suicide and beyond. PTSD is commonly associated with veterans of war and victims of abuse. There are more than 3 million cases of PTSD reported annually in the United States alone.
Many people who go through traumatic events have difficulty adjusting and coping for a while, but they don’t have PTSD — with time and good self-care, they usually get better. But if the symptoms get worse or last for months or even years and interfere with your functioning, you may have PTSD.
THE PAST The most common pharmaceutical prescriptions for PTSD are:
Prozac – Prozac affects chemicals in the brain that may become unbalanced and cause depression, panic, anxiety, or obsessive-compulsive symptoms. Common Prozac side effects may include:
sleep problems (insomnia), strange dreams headache, dizziness, vision changes tremors or shaking, feeling anxious or nervous pain, weakness, yawning, tired feeling upset stomach, loss of appetite, nausea, vomiting, diarrhea dry mouth, sweating, hot flashes changes in weight or appetite stuffy nose, sinus pain, sore throat, flu symptoms or decreased sex drive, impotence, or difficulty having an orgasm suicidal thoughts Zoloft – Zoloft (sertraline) is an antidepressant in a group of drugs called selective serotonin reuptake inhibitors (SSRIs). Sertraline affects chemicals in the brain that may become unbalanced and cause depression, panic, anxiety, or obsessive-compulsive symptoms.
Call your doctor at once if you have:
very stiff (rigid) muscles, high fever, sweating, confusion, fast or uneven heartbeats, feeling like you might pass out;
agitation, hallucinations, fever, overactive reflexes, tremors;
nausea, vomiting, diarrhea, loss of appetite, feeling unsteady, loss of coordination; or
headache, trouble concentrating, memory problems, weakness, fainting, seizure, shallow breathing or breathing that stops.
Get emergency medical help if you have any of these signs of an allergic reaction to Zoloft: skin rash or hives; difficulty breathing; swelling of your face, lips, tongue, or throat.
Report any new or worsening symptoms to your doctor, such as: mood or behavior changes, anxiety, panic attacks, trouble sleeping, or if you feel impulsive, irritable, agitated, hostile, aggressive, restless, hyperactive (mentally or physically), more depressed, or have thoughts about suicide or hurting yourself.
Paxil – Paxil (paroxetine) is an antidepressant in a group of drugs called selective serotonin reuptake inhibitors (SSRIs). Paroxetine affects chemicals in the brain that may become unbalanced. Common Paxil side effects may include:
vision changes; weakness, drowsiness, dizziness; sweating, anxiety, shaking; sleep problems (insomnia); loss of appetite, constipation; dry mouth, yawning; or decreased sex drive, impotence, or difficulty having an orgasm. Get emergency medical help if you have any of these signs of an allergic reaction to Paxil: skin rash or hives; difficulty breathing; swelling of your face, lips, tongue, or throat.
Report any new or worsening symptoms to your doctor, such as: mood or behavior changes, anxiety, panic attacks, trouble sleeping, or if you feel impulsive, irritable, agitated, hostile, aggressive, restless, hyperactive (mentally or physically), more depressed, or have thoughts about suicide or hurting yourself.
Xanax – Xanax (alprazolam) belongs to a group of drugs called benzodiazepines. It works by slowing down the movement of chemicals in the brain that may become unbalanced. This results in a reduction in nervous tension (anxiety).
Call your doctor at once if you have a serious side effect such as:
depressed mood, thoughts of suicide or hurting yourself, unusual risk-taking behavior, decreased inhibitions, no fear of danger;
confusion, hyperactivity, agitation, hostility, hallucinations;
feeling like you might pass out;
urinating less than usual or not at all;
chest pain, pounding heartbeats or fluttering in your chest;
uncontrolled muscle movements, tremor, seizure (convulsions); or
jaundice (yellowing of the skin or eyes)
These drugs come with severe and wide ranging side effects. Psychological and psychiatric treatment is often necessary to manage the disorder.
Cannabis with various potency profiles of the cannabinoid THC are the most well-documented in being effective in combating PTSD. Most patients prefer indica dominant strains for their more calming and soothing effects, but a variety of strains have been reported by patients as successful.
Difference between CBD and THC in Medical Marijuana
THC, or tetrahydrocannabinol, is the chemical responsible for most of marijuana’s psychological effects. It acts much like the cannabinoid chemicals made naturally by the body, according to the National Institute on Drug Abuse (NIDA).
Cannabinoid receptors are concentrated in certain areas of the brain associated with thinking, memory, pleasure, coordination and time perception. THC attaches to these receptors and activates them and affects a person’s memory, pleasure, movements, thinking, concentration, coordination, and sensory and time perception, according to NIDA.
THC is one of many compounds found in the resin secreted by glands of the marijuana plant. More of these glands are found around the reproductive organs of the plant than on any other area of the plant. Other compounds unique to marijuana, called cannabinoids, are present in this resin. One cannabinoid, CBD is nonpsychoactive, according to the National Center for Biotechnology Information, and actually blocks the high associated with THC.
Cannabidiol or CBD, is the cannabis compound that has significant medical benefits, but does not make people feel “stoned” and can actually counteract the psychoactivity of THC. CBD does not cause a high, unlike THC. The reason why CBD is non-psychoactive is due to its lack of affinity for CB1 receptors. CB1 receptors are found in high concentrations in the brain, and are the pathways responsible for the psychoactive effects of THC.
CBD and THC levels tend to vary between different strains and varieties of cannabis. By using selective breeding techniques, we have managed to create varieties with high levels of CBD and THC.
In a recent study, researchers at the University of Haifa in Israel were able to prevent rats from developing post-traumatic stress disorder (PTSD) by treating them with the active compounds in marijuana, or cannabinoids.
Led by Dr. Irit Akirav from the Department of Psychology, the team used rats because of their similarity to humans in responding to trauma.
People with PTSD — a severe type of anxiety disorder — suffer from symptoms that can be set off by common triggers, also known as trauma reminders.
While PTSD is usually treated after symptoms appear, the team found that dosing rats with cannabinoids following a traumatic event could make them immune to future triggers.
In other words, cannabis made the effects of trauma reminders ‘disappear’ – Dr. Akirav
The treated rats showed no symptoms of PTSD. But rats that were left untreated did, including impairments in memory extinction, changes in pain sensation and increased panic behavior.
Interestingly, the researchers found that the treatment worked by rewiring circuits of the brain involved with trauma.
The findings add to a growing body of evidence, the researchers note, suggesting marijuana can not only help manage symptoms of PTSD but also prevent symptoms from developing early on.
Anecdotal reports by patients with PTSD indicate effective strains include sativas Jack Herer, Sour Diesel and Durban Poison, hybrids Girl Scout Cookies, Headband and Pineapple Express, and indicas Granddaddy Purple, Blue Cheese and Purple Kush.
MARIJUANA MAY BE A LAST RESORT
Considering the fact that 20 veterans commit suicide every day in the United States, there is a clear need for a new form of treatment for people who suffer from PTSD. As Dr. Sue Sisley, the psychiatrist who is leading the first randomized, controlled trial of the ability for cannabis to treat post-traumatic stress syndrome states, “I eventually started to see that a lot of these veterans were not responding to conventional medications, and then I began seeing a lot of deaths in my practice…these were people who had already been through the gauntlet of medications and nothing had helped.”
As Dr. Sisley explains, the traditional anti-depressants and anti-anxiety medications given to people with PTSD often end up causing more harm than help. Many veterans and others who have tried marijuana are actually able to slowly ween themselves off of the harsh mix of medications that they take on a daily basis.
WHY DOES MARIJUANA TREAT POST TRAUMATIC STRESS DISORDER?
The science behind why marijuana could help ease the effects of PTSD is actually very simple. One of the main symptoms of PTSD is an endocannabinoid deficiency. In people with PTSD, the body does not produce enough endocannabinoids to sufficiently fill cannabinoid receptors. Marijuana counteracts the symptoms of endocannabinoid deficiency by introducing cannabinoids from outside of the body that act as a replacement for the decreased production of cannabinoids in the body.
While there is overwhelming scientific and anecdotal evidence proving the efficacy of marijuana in treating post-traumatic stress syndrome, many people still don’t have access to it. For residents of Colorado however, that is changing.
COLORADO MAKES PTSD AN ELIGIBLE CONDITION
Colorado lawmakers recently passed a bill making Colorado one of about 16 states which consider PTSD an eligible condition for treatment with medical marijuana. This huge step forward will finally allow Colorado citizens who suffer from PTSD to access the medicine they deem best fit to treat their condition. Hopefully more of the 29 states with established legal medical marijuana programs will consider the needs of veterans and others who have to live with PTSD and establish it as an accepted condition.While Colorado and other states are pushing forward by making PTSD an eligible condition for medical marijuana use, there are still many restrictions in place making it hard or even impossible for people to access the medicine they need. The fight must continue until everyone with PTSD has the chance to treat their condition with the safest and most effective medicine possible.
VETS WITH PTSD SMOKE POT FOR THE FIRST TIME
RESEARCHERS TESTING MEDICAL MARIJUANA ON VETERANS FOR PTSD SYMPTOM RELIEF
The Government Is Going to Let Vets With PTSD Smoke Pot for the First Time – The federal government has given the green light to researchers who are ready to begin testing marijuana as a treatment for war veterans with post-traumatic stress disorder, as first reported by Military.com. The study parameters were approved by the Department of Health and Human Services in March 2014 but held up by the National Institute of Drug Abuse, which had until Wednesday balked at supplying the drug for clinical trials.
As many as 20% of Iraq and Afghanistan War veterans experience PTSD, up from a high-end estimate of 12% after the first Gulf War, according to the Department of Veteran Affairs. An estimated 15% of Vietnam vets have been diagnosed, a disproportionate number coming from minority groups who, the VA says, served in combat zones more often than whites.
Addressing a serious issue: Recent studies show have found that a staggering 22 veterans commit suicide every day. The suicide rate among those returning from the most recent wars is roughly 50% higher than in their civilian peers, according to the Los Angeles Times.
Early plans call for the study to be conducted in Maryland and Arizona, where lead researcher Dr. Suzanne Sisley is working despite being dismissed from her job at the University of Arizona because of concerns about statewide prohibition laws, according to the Military Times. Colorado, which legalized marijuana for medicinal purposes in 2000 and for recreational use in a 2012, provided Sisley with a $2 million grant to continue her studies, the Times reports.
The Times says the 76 veterans set to participate will either smoke or ingest with a vaporizer about one gram daily, then provide weekly updates to researchers. They will use three kinds of marijuana and a placebo strain, according to Military.com.
NIDA’s decision to sign off on the trials, which are expected to gain final Drug Enforcement Administration approval in the coming weeks, has received support from internal review boards at the University of Pennsylvania and the Copernicus Independent Review Board of North Carolina. MAPS expects Johns Hopkins University to submit its backing soon, spokesman Brad Burge told Military.com.
Changing the dynamic: The study results could change the game on Capitol Hill, where Reps. Earl Blumenauer (D-Ore.) and Dana Rohrabacher (R-Calif.) are co-sponsoring a bill, called the Veterans Equal Access Act, that would allow VA physicians to recommend medical marijuana to veterans with PTSD. Federal law currently prohibits those doctors from simply suggesting cannabis as a potential treatment.
“Our antiquated drug laws must catch up with the real suffering of so many of our veterans,” Rohrabacher said during a joint news conference to introduce the bill in November. “This is now a moral cause and a matter of supreme urgency.”
Now, after years of dragging its feet and tying up scientific exploration in red tape, the federal government is finally beginning the process of offering affected veterans a chance to reclaim a better life.
HARTFORD, Conn. — There are good days for West Tarricone. Days when she can laugh and live like any other 9-year-old. Days when she can play with her brother, Blake, and watch “The Ellen DeGeneres Show” on her iPad.
But there are also bad days. Days when her body weathers 100 seizures. Days when it has closer to 1,000 — some lasting more than 90 minutes.
Lately, she’s been having more good days thanks to Connecticut’s new experiment with medical marijuana.
Doctors diagnosed West just after her first birthday, not long after her mother Cara Tarricone noticed she had been jerking oddly. Two weeks before they learned West had intractable epilepsy, she had a grand mal seizure.
In the years since, West has tried a battery of nearly two dozen medicines, but just one has brought her some comfort — cannabis oil, which is derived from the marijuana plant.
“Without it, we’d be in the hospital, we’d just live there because we’d have to be controlling bigger seizures all the time,” Tarricone said.
West takes the cannabis oil daily, in addition to four pharmaceutical medications. Tarricone says she’s “pleased” with the daily medication, and has seen a decrease in some seizure activity.
But the medicine’s most profound effect comes when West’s seizures flare beyond control. When that occurs, Tarricone rubs a different concentration of the oil into her daughter’s gums as a “rescue medicine.” Within a minute, the more intense symptoms subside. Her tightened muscles slacken. Her breathing regulates.
Before the oil, the family had to rely on pharmaceutical rescue medicines. When they didn’t show signs of working right away, Tarricone would have to call for an ambulance.
During intense seizures, they usually didn’t work.
“I said immediately, this is a natural option, and I want this for my child,” Tarricone said. “Something that could eliminate a lot of extra pharmaceutical medication in her system and be so simple and straightforward? This is something we needed for our daughter.”
The state legislature passed a bill approving cannabis as a palliative treatment for childhood seizure patients in May 2016, but the medicine didn’t become available until October, when the law went into effect.
The Tarricones received their first batch for West in March. She is currently one of less than 50 children in Connecticut utilizing the medicine, according to the state Department of Consumer Protection.
Getting the medicine was a victory for the family, one of the more vocal advocates for legalizing cannabis oil.
And as they begin using it, they hope their story inspires a greater understanding and wider acceptance of a substance that could improve the lives of other children.
Story continues below photo gallery
In this Aug. 26, 2016 photo, West Tarricone sits with her mother Diane, after Diane came home from work in North Windham, Conn. West was diagnosed with a severe epileptic disorder before her first birthday. After trying nearly two dozen medications, her family sought out medical marijuana to better control her seizures. (Lauren Schneiderman, Hartford Courant via AP)
Fighting for medicine
West’s condition is so unstable that Tarricone had to give up her job to care for the girl. Her wife, Diane, works three jobs to support the family.
Moving to another state, like California, where medical marijuana is more readily available, was not an option. Their son, for one, couldn’t bear the thought of leaving his friends and school, she said.
Besides, the Tarricones are attached to their neurologist at Connecticut Children’s Medical Center, Dr. Jennifer Madan Cohen.
Attached to the point where leaving her care was a risk they wouldn’t take. So if they couldn’t go to the drug, they’d find a way to bring it to them.
Tarricone lent her voice to the movement of parents seeking medical marijuana for their children. It was a fledgling group in 2015, when the first bill failed in the state legislature.
But a year later, they were ready, Tarricone said, adding their testimony to a groundswell of support for the legislation.
“We shared stories and made it personal, how it would affect us, how it would affect our children,” she said. “I truly think that gave us the momentum. In that year, we had enough opportunity to educate legislators personally as to what the medication is, how it worked, how effective it could be, and that parents should really be the ones making that decision with their medical care providers.”
But when they initially broached the subject with Madan Cohen and the other members of West’s medical team, they were somewhat skeptical, Tarricone said.
“They just didn’t know that this was something parents were pursuing, and moving to other states to pursue,” she said. “But I kept saying, ‘This is what’s happening, let’s talk about this more, I want to continue this conversation.’”
Madan Cohen has treated West since her diagnosis. In that time, she’s seen her try a bevy of medicines for the seizures that plague her.
“You name it, she’s been on it,” Madan Cohen, the medical director of the hospital’s epilepsy center and clinical neurophysiology lab, said in her office recently. “If there’s a medicine I’ve had, she’s tried it.”
Because of that, she doesn’t see the Tarricones’ interest in medical marijuana as “irrational.”
“They’ve seen their child have pretty severe seizures and not have control with the various treatments they have,” she said. “So I’ve never discouraged a family’s want to try this treatment, but we have to decide when it’s the right time to try something.”
She acknowledged that West was at a point in her life where trying medical marijuana was an attractive option.
But when it comes to the treatment’s effectiveness, Madan Cohen is unable to give a definite answer. And it’s not just because the utilization of the oil is still relatively new for the adolescent.
Trials and error
Medical marijuana is unique in the way it’s dispensed. Normally, medication requires FDA approval before it can be prescribed to patients. However, because individual states are legalizing marijuana for medicinal purposes, patients seeking the drug are circumventing that approval process, receiving a substance that the federal government considers illegal — and largely untested as a drug.
Still, within the medical community, there’s a body of evidence supporting the benefits of using cannabidiol, a chemical compound found in marijuana, in treating seizures. Evidence like clinical trials sponsored by pharmaceutical companies with deep pockets. Madan Cohen herself is involved in one such trial, the goal of which is to accumulate enough evidence to one day seek FDA approval.
But the products available in Connecticut are not purely cannabidiol. They also contain tetrahydrocannabinol, another chemical component found in marijuana known to be psychoactive, in various concentrations.
Trials studying the effectiveness of THC, or any other component of marijuana, can be difficult to get clearance for, according to Dr. William Zempsky, a pediatrician with Connecticut Children’s Medical Center who sits on the board of physicians for the state’s medical marijuana program.
For one, limited availability means that different physicians work with different strains of the plant. And there seem to be multiple variants for every study: how the marijuana is consumed and the conditions it’s used to treat, for example.
“We’re dealing with a different combination of drugs that people study,” Zempsky said. “It’s really hard to take all that information and go forth and say ‘Medical marijuana works for x condition,’ because we’re not talking about the same thing, and to drill it down to an individual patient is more complex.”
Connecticut has a history of such studies. St. Francis Hospital and Medical Center sought to study marijuana as an alternative to opioid painkillers. Yale University has sponsored similar trials in the past, according to Zempsky.
And Connecticut Children’s is laying the groundwork for a study of its own, using data from its patients to see the long-term effects of medical marijuana.
The medications that West uses, for example, are low doses of THC. Just enough to treat her seizures and keep her comfortable.
The family initially tried cannabidiol medication, Tarricone said. It made West’s seizures even worse.
Still, THC’s effectiveness hasn’t been proven clinically, Madan Cohen said. Instead, physicians rely on anecdotal evidence, like the Tarricones’ positive experience, when informing prospective patients.
“I think there’s enough people who reported it that that’s some level of data,” Madan Cohen said. “But it’s just not the same level of data as a randomized, controlled trial and the things the FDA requires to get a medicine approved as a treatment.”
Trials help determine crucial medical information, like the drug’s side effects, dosing recommendations and interactions with other medicines.
Without them, physicians treating patients with medical marijuana have to undergo some trial and error, seeing what works best in their individual case.
“My advice to parents — and this is what I told West’s parents as well — is that you have to think of it as you’re doing your own clinical trial on your child,” she said. “We don’t know what the outcome is going to be, we don’t know if they’re going to respond, we don’t know what the side effects are.
“But there are some families who feel that risk is acceptable compared to what is going on in the child’s life medically at the current time,” she added.
A family’s choice
FDA approval would have the additional benefit of making the medicine more affordable: All approved drugs have to be covered at least partially by medical insurance.
If for no other reason than that, Madan Cohen is encouraging more trials, more testing from policymakers both here and in Washington.
“Now, people are desperate, and they feel like the government is just getting in their way, as opposed to the idea that the government is protecting them from potential harm,” she said. “And I think the intentions are good to make sure that something doesn’t have a lot of side effects.”
Zempsky said he understands the frustrations that some parents may feel, especially if they see medical marijuana as an effective alternate remedy. But, still, he cautioned against universal adoption of the drug too early.
“While I’ve seen a lot of impressive outcomes with medical marijuana, it’s not as good as everyone says it is,” Zempsky said. “We have to be careful of letting things get out too far ahead of us, because we don’t know long-term risks, especially for child patients.”
He’s not outright opposed to prescribing the drug for children suffering from certain conditions, like epilepsy. He simply argues that there isn’t enough data out there to know how adolescent use of medical marijuana affects patients later in life.
“If you give medical marijuana to someone who’s 13, you need to know what they’re like when (they’re) 40,” he said. “That takes time, and there’s no way to expedite that. So we won’t be comfortable for years in the pediatric world to open the floodgates, even if we’re comfortable in the adult world.”
But research is needed. And Rep. Gail Lavielle understands that.
The Republican from Wilton became a vocal supporter last spring for medical marijuana in the state — both as an elected official and a mother.
“When you’re a parent, you want to do everything you can to help your child. You’re not going to put your child in danger voluntarily,” she said. “So you must be pretty desperate to try and find something to help them if you’re willing to consider something that you’re not totally sure of the risks of.
“So I listened to this, and I decided it wasn’t up to me to decide, that it would be supreme and egregious arrogance to think otherwise,” she added.
Lavielle stresses that she’s not “pro marijuana,” especially when it comes to recreational use. But in conversations with her constituents who have epileptic children, she realized the government shouldn’t create unneeded roadblocks.
“My stance is that it’s not up to me as a legislator, as a member of the government, or to the legislature itself to tell people whether they can try something that they think might work when their child has a very grave disease,” she said.
Her colleagues agreed: The bill passed 129-13 in the House and 23-11 in the Senate in May 2016.
Doing everything possible
Meanwhile, away from the Capitol and long-winded debates over policy, children like West Tarricone live the reality of that decision, their families hoping for continued success with treatment.
The 9-year-old from Windham doesn’t let anything slow her down. Her personality is bright and bubbly. She’s affectionate, grabbing the hands of new acquaintances as she leads them around her living room.
Tarricone says her daughter loves to laugh, especially at the pratfalls and tumbles her twin brother makes while they play.
The levity helps, Tarricone said. It takes the family’s collective attention away from the epilepsy. So does the cannabis oil.
What started as a seeming long shot, an idea that Tarricone first had three years ago, now sits in the family’s medicine cabinet, ready to soothe the seizures when they overtake her daughter.
“If you were in our position and you were running out of all pharmaceutical options, and here’s this hope at the end of a really bad tunnel for a child who’s going to prematurely die, you’re going to know,” Cara Tarricone said.
“Because when you look in your child’s eyes, you know you have to do everything possible to help them.
Marijuana has been considered as a medical aide to cancer patients for a very long time. It is proven to help people fight through the terrible side effects of chemotherapy and there have even been conflicting reports on whether or not marijuana can actually kill cancer cells. In a study recently published in the International Journal of Oncology, it was found that the combination of certain cannabinoids and chemotherapy drugs increases the success of the chemotherapy drugs on leukemia cells.
WHO CONDUCTED THIS STUDY
Researchers from St. George’s University in London, England, tested multiple different pairings of cannabinoids and chemotherapy drugs on leukemia cells in a laboratory. They tested different timeframes of administration, amounts of medicine given, and mixes of cannabinoids and chemotherapy drugs to see exactly what was most effective.
THE STUDY’S RESULTS
The study determined many groundbreaking pieces of information. It determined that the potency of the anti-leukemia chemotherapy drugs was increased when cannabinoids were given after the chemotherapy drugs. The distinction was made by the researchers that the cannabinoids were to be administered only after the chemotherapy drugs had been, and not before. The study states: “the sequence of drug administration is crucial to the success of these triple combinations and should be considered when planning such treatments.”
WHY IS THIS IMPORTANT?
Chemotherapy is known for its debilitating side effects, such as: fatigue, hair loss, infection, appetite loss and weight change. These side effects are due to the toxic nature of the drugs. The drugs are used to kill cancer cells, yet they tend to affect healthy cells as well. The most important find from this study, is the fact that by treating cancer with both chemotherapy drugs and cannabinoids, the amount of chemotherapy drugs needed to produce the same effect is significantly lower. This is important because the smaller amount of toxic chemicals entering the body of an already weekend patient the better.
The medical uses of marijuana are many in number, and varying in degree of success. While we are still at the early stages of proving marijuana’s efficacy into treating cancer, this new study does prove that marijuana can kill leukemia cells while also lessening the negative effects of chemotherapy drugs.
Annalise Lujan was in the middle of a gymnastics meet in April when she started vomiting and lost all feeling in her legs.
As the 12-year-old fell into a crippling seizure, her parents rushed her to the hospital, and she was put into a medically induced coma to save her brain from damage.
Annalise was then flown to a specialist unit at Phoenix Children’s Hospital, where she was diagnosed with a rare epilepsy syndrome, known as febrile infection-related epilepsy syndrome (FIRES).
The condition causes Annalise to have seizures continuously, which can lead to brain injury and even death. It meant doctors couldn’t bring her out of the coma until they had an effective method to prevent her seizures.
Because regular anti-epilepsy medication doesn’t work on this condition, her mother Maryann Estrada-Lujan researched other options.
She found a cannabis-derived drug, called cannabidiol, and Annalise was able to be brought out of the coma after three treatments on May 8.
Now Annalise is no longer plagued by constant seizures and is in therapy to regain her cognitive abilities.
Annalise Lujan, 12, (left, before she was sick) was diagnosed febrile infection-related epilepsy syndrome in April. The condition causes her to have seizures continuously. She was put in a medically induced coma to save her from brain trauma (right in April)
While the cannabis derived drug was useful in Annalise’s case, medical experts are still divided on its overall effectiveness.
Former Surgeon General Vivek Murthy admitted marijuana could be helpful in treating certain conditions but cautioned that there needs to be more research.
In a groundbreaking study, scientists at New York University and Great Ormond Street Children’s Hospital found cannabidiol halved a rare epileptic seizure.
This marked a major milestone in efforts to introduce the drug as an effective treatment plan.
However, other experts claimed the study wasn’t as promising because the patients were also taking other drugs.
Scientists are expressing the need to further examine the medical benefits of cannabis before it is made readily available to patients.
When Annalise’s parents first brought her to the hospital, the medical experts thought she had a stomach virus.
Estrada-Lujan said to KVOA: ‘One day, she was just a healthy young lady, going to school, participating in her community and her gymnastics, and the next day – fighting for her life.
‘She was put on a ventilator, and put into a medical coma, and, we haven’t talked to her since.’
Symptoms of FIRES normally appears one day to 14 days after a child has a mild fever.
Seizures start slowly before getting worse, with some children having 100 seizures a day. FIRES is extremely rare, with one in a million children contracting it.
It happens when a virus spreads to the brain or autoimmune system after an ordinary cold or stomach flu.
Now Annalise is no longer plagued by constant seizures and is in therapy (pictured in May) to regain her cognitive abilities.
Regular epilepsy medications aren’t successful in treating FIRES, so Estrada-Lujan began looking for a solution elsewhere.
She learned that cannabidiol has been studied to treat epilepsy conditions and pushed for its use in her daughter’s treatment.
The oil has very low levels of THC, which is the substance responsible producing the ‘high’ in marijuana.
Since the substance wasn’t approved at the time, Annalise’s doctors had to rush for its approval with the FDA and DEA.
Less than two days after Annalise’s first treatment, she was cured of the constant seizures on May 8.
Estrada-Lujan added to KVOA: ‘She opened her eyes, and she was scared. She was afraid. She cried. And, I whispered to her that she was very strong, she’s beautiful, and she’s strong, and she needed to keep breathing, and she did.’
Now Annalise is in recovery and will need therapy to regain the same cognitive functions that she had before.
Cannabidiol oil was found to be successful in treating other forms of epilepsy.
A recent study by New York University and Great Ormond Street found the syrup, taken once a day, reduced the convulsive seizures by 48 percent in under-18s with Dravet syndrome, a rare and severe form of epilepsy.
Experts don’t considered it as a ‘cure’ – because patients have to keep taking it every day for the benefits to last.
They also still do not understand precisely how the cannabis compound controls epilepsy symptoms.
It is thought to act on the endocannabinoid system, a network of molecular receptors in the brain and nervous system that not only generates the cannabis ‘high’ but is linked to a wide range of physiological processes.
Around three million Americans and more than 600,000 people in the UK suffer with epilepsy and for a third of them drugs do not work to control their symptoms.
By most standards Matt and Paige Figi were living the American dream. They met at Colorado State University, where they shared a love of the outdoors. After getting married, the couple bought a house and planned to travel the world. They did travel, but their plans changed when their first child was born in 2004.
Max was 2 when they decided to have another child. The couple got the surprise of their lives when an ultrasound revealed not one but two babies. Charlotte and Chase were born October 18, 2006. “They were born at 40 weeks. … Charlotte weighed 7 pounds, 12 ounces,” Paige said. “They were healthy. Everything was normal.”
Seizures and hospital stays begin
The twins were 3 months old when the Figis’ lives changed forever. Charlotte had just had a bath, and Matt was putting on her diaper. “She was laying on her back on the floor,” he said, “and her eyes just started flickering.” The seizure lasted about 30 minutes. Her parents rushed her to the hospital. “They weren’t calling it epilepsy,” Paige said. “We just thought it was one random seizure. They did a million-dollar work-up — the MRI, EEG, spinal tap — they did the whole work-up and found nothing. And sent us home.”
A week later, Charlotte had another seizure. This one was longer, and it was only the beginning. Over the next few months, Charlotte — affectionately called Charlie — had frequent seizures lasting two to four hours, and she was hospitalized repeatedly. Doctors were stumped. Her blood tests were normal. Her scans were all normal.
They said it’s probably going to go away. It is unusual in that it’s so severe, but it’s probably something she’ll grow out of. – Paige Figi
But she didn’t grow out of it. The seizures continued. The hospital stays got longer. One of the doctors treating Charlotte thought there were three possible diagnoses.
The worse-case scenario? Dravet Syndrome, also known as myoclonic epilepsy of infancy or SMEI.
Dravet Syndrome is a rare, severe form of intractable epilepsy. Intractable means the seizures are not controlled by medication. The first seizures with Dravet Syndrome usually start before the age of 1. In the second year, other seizures take hold: myoclonus, or involuntary, muscle spasms and status epilepticus, seizures that last more than 30 minutes or come in clusters, one after the other.
At that time, the Figis said, Charlotte was still developing normally, talking and walking the same day as her twin. But the seizures continued to get worse. The medications were also taking a toll. She was on seven drugs — some of them heavy-duty, addictive ones such as barbiturates and benzodiazepines. They’d work for a while, but the seizures always came back with a vengeance.
“At 2, she really started to decline cognitively,” Paige said. “Whether it was the medicines or the seizures, it was happening, it was obvious. And she was slipping away.” When Charlotte was 2½, the Figis decided to take her to Children’s Hospital Colorado. A neurologist tested her for the SCN1A gene mutation, which is common in 80% of Dravet Syndrome cases. After two months, the test came back positive. “I remember to this day it was a relief,” Paige said. “Even though it was the worst-case scenario, I felt relief just to know.”
Matt, a Green Beret, decided to leave the military. “Every mission, every training I was going to do I was called home because she was in the pediatric ICU again or in the hospital again.” They were quickly running out of options. They considered a drug from France. Doctors suggested an experimental anti-seizure drug being used on dogs.
Paige took her daughter to Chicago to see a Dravet specialist, who put the child on a ketogenic diet frequently used to treat epilepsy that’s high in fat and low in carbohydrates. The special diet forces the body to make extra ketones, natural chemicals that suppress seizures. It’s mainly recommended for epileptic patients who don’t respond to treatment.
The diet helped control Charlotte’s seizures but had a lot of side effects. She suffered from bone loss. Her immune system plummeted. And new behavioral problems started popping up.
At one point she was outside eating pine cones and stuff, all kinds of different things. As a parent you have to say, let’s take a step back and look at this. Is this truly beneficial treatment because of these other things? – “Matt Figi
Two years into the diet, the seizures came back.
The end of the rope
In November 2000, Colorado voters approved Amendment 20, which required the state to set up a medical marijuana registry program. There are eight medical conditions for which patients can use cannabis — cancer, glaucoma, HIV/AIDS, muscle spasms, seizures, severe pain, severe nausea and cachexia or dramatic weight loss and muscle atrophy. The average patient in the program is 42 years old. There are 39 patients under the age of 18.
Paige had consistently voted against marijuana use. That was before Dravet Syndrome entered their lives. Matt, now a military contractor spending six months a year overseas, used his spare time scouring the Internet looking for anything that would help his little girl.
He found a video online of a California boy whose Dravet was being successfully treated with cannabis. The strain was low in tetrahydrocannabinol, or THC, the compound in marijuana that’s psychoactive. It was also high in cannabidiol, or CBD, which has medicinal properties but no psychoactivity. Scientists think the CBD quiets the excessive electrical and chemical activity in the brain that causes seizures. It had worked in this boy; his parents saw a major reduction in the boy’s seizures.
By then Charlotte had lost the ability to walk, talk and eat. She was having 300 grand mal seizures a week. Her heart had stopped a number of times. When it happened at home, Paige did cardiopulmonary resuscitation until an ambulance arrived. When it happened in the hospital, where they’d already signed a do-not-resuscitate order, they said their goodbyes. Doctors had even suggested putting Charlotte in a medically induced coma to give her small, battered body a rest.
She was 5 when the Figis learned there was nothing more the hospital could do. That’s when Paige decided to try medical marijuana. But finding two doctors to sign off on a medical marijuana card for Charlotte was no easy feat. She was the youngest patient in the state ever to apply.
Scientists don’t fully understand the long-term effects early marijuana use may have on children. Studies that show negative effects, such as diminished lung function or increased risk of a heart attack, are primarily done on adult marijuana smokers. But Charlotte wouldn’t be smoking the stuff.
Childhood is also a delicate time in brain development. Preliminary research shows that early onset marijuana smokers are slower at tasks, have lower IQs later in life, have a higher risk of stroke and increased incidence of psychotic disorders, leaving some scientists concerned.
“Everyone said no, no, no, no, no, and I kept calling and calling,” Paige said. She finally reached Dr. Margaret Gedde, who agree to meet with the family. “(Charlotte’s) been close to death so many times, she’s had so much brain damage from seizure activity and likely the pharmaceutical medication,” Gedde said. “When you put the potential risks of the cannabis in context like that, it’s a very easy decision.”
The second doctor to sign on was Alan Shackelford, a Harvard-trained physician who had a number of medical marijuana patients in his care. He wasn’t familiar with Dravet and because of Charlotte’s age had serious reservations. “(But) they had exhausted all of her treatment options,” Shackelford said. “There really weren’t any steps they could take beyond what they had done. Everything had been tried — except cannabis.”
Paige found a Denver dispensary that had a small amount of a type of marijuana called R4, said to be low in THC and high in CBD. She paid about $800 for 2 ounces — all that was available — and had a friend extract the oil. She had the oil tested at a lab and started Charlotte out on a small dose. “We were pioneering the whole thing; we were guinea pigging Charlotte,” Paige said. “This is a federally illegal substance. I was terrified to be honest with you.”
But the results were stunning. “When she didn’t have those three, four seizures that first hour, that was the first sign,” Paige recalled. “And I thought well, ‘Let’s go another hour, this has got to be a fluke.’ ” The seizures stopped for another hour. And for the following seven days. Paige said she couldn’t believe it. Neither could Matt. But their supply was running out.
Paige soon heard about the Stanley brothers, one of the state’s largest marijuana growers and dispensary owners. These six brothers were crossbreeding a strain of marijuana also high in CBD and low in THC, but they didn’t know what to do with it. No one wanted it; they couldn’t sell it. Still, even they had reservations when they heard about Charlotte’s age. But once they met her, they were on board.
The biggest misconception about treating a child like little Charlotte is most people think that we’re getting her high, most people think she’s getting stoned, Josh Stanley said, stressing his plant’s low THC levels. Charlotte is the most precious little girl in the world to me. I will do anything for her. – Josh Stanley
The brothers started the Realm of Caring Foundation, a nonprofit organization that provides cannabis to adults and children suffering from a host of diseases, including epilepsy, cancer, multiple sclerosis and Parkinson’s, who cannot afford this treatment. People have called them the Robin Hoods of marijuana. Josh Stanley said it’s their calling. They use the money they make from medical marijuana patients and get donations from sponsors who believe in their cause. They only ask patients such as the Figis to donate what they can. “We give (cannabis) away for next to free,” Stanley said. “The state won’t allow us to actually give it away, so we give it away for pennies really.”
Charlotte gets a dose of the cannabis oil twice a day in her food. Gedde found three to four milligrams of oil per pound of the girl’s body weight stopped the seizures.
Today, Charlotte, 6, is thriving. Her seizures only happen two to three times per month, almost solely in her sleep. Not only is she walking, she can ride her bicycle. She feeds herself and is talking more and more each day. “I literally see Charlotte’s brain making connections that haven’t been made in years,” Matt said. “My thought now is, why were we the ones that had to go out and find this cure? This natural cure? How come a doctor didn’t know about this? How come they didn’t make me aware of this?”
The marijuana strain Charlotte and now 41 other patients use to ease painful symptoms of diseases such as epilepsy and cancer has been named after the little girl who is getting her life back one day at a time. It’s called Charlotte’s Web.
“I didn’t hear her laugh for six months,” Paige said. “I didn’t hear her voice at all, just her crying. I can’t imagine that I would be watching her making these gains that she’s making, doing the things that she’s doing (without the medical marijuana). I don’t take it for granted. Every day is a blessing.” Matt added, “I want to scream it from the rooftops. I want other people, other parents, to know that this is a viable option.”
A recent study published in The New England Journal of Medicine confirmed what many marijuana advocates have for years, marijuana can reduce the amount of seizures had by epileptic children. The study’s lead investigator, Dr. Orrin Devinsky, stated, “This study clearly establishes cannabidiol as an effective anti-seizure drug for this disorder and this age group.”
THE STUDY’S FINDINGS
The double-blind, placebo-controlled study tested 120 children and teenagers who suffer from Dravet syndrome. Dravet syndrome is a form of epilepsy that causes many daily seizures and kills 20 percent of patients before they reach the age of 20. During the 14 week study, the average number of seizures per month for the group prescribed cannabidiol (CBD) decreased from 12.4 to 5.9 while the placebo group’s average seizures decreased from 14.9 to 14.1.
THE RESULTS MUST BE TAKEN WITH CAUTION
The news that there could be some relief for Dravet sufferers is huge. And while the news is exciting, Dr. Devinsky cautions, “This is not a panacea,” in reference to the study’s findings. The study proves marijuana’s effectiveness in treating Dravet syndrome but not for all forms of epilepsy. There were however, some side effects, including: diarrhea, vomiting, fatigue, pyrexia, somnolence, and abnormal results on liver-function tests, likely due to the high volume of CBD given to each of the studies participants. The study’s participants were each given 20 mg per kilogram of body weight per day or placebo which is a large dose of CBD for anyone, let alone a child. For proof of general effectiveness for seizures, more studies need to be conducted, though the evidence is exciting.
MORE RESEARCH MUST BE DONE
Studying the effects of marijuana as a medicine is important to deeply understanding exactly what the benefits can be. Yet due to the lingering schedule 1 classification by the DEA as well as the recently re-upped “war on drugs,” marijuana research is all but prohibited by the federal government. Until the federal government’s antiquated opinions on marijuana and its possible medicinal qualities, studies like these will not be possible in the United States. While there were side effects, including: diarrhea, vomiting, fatigue, pyrexia, somnolence, and abnormal results on liver-function tests, likely due to the high volume of CBD given to each of the studies participants.