Cannabis Provides The Most Effective Relief For Fibromyalgia Pain

Hey Big Pharma, it is high time (did you see what I did there?) to relinquish your stranglehold on US consumers. Your drugs are overpriced… there’s an understatement…they don’t work in many cases and they have horrible side effects. Did you know that nearly 70% of Americans are on at least one prescription drug and more than half take two? This is according to the nice folks at the Mayo Clinic and Olimsted Medical Center. Want to read more about that?*edit*

Remember the movie “Network” with Peter Finch? OK, if you are younger than 50, you probably don’t remember it. If you’ve never seen it, you should rent it. Peter Finch’s character gets the ax from broadcast TV and is none too happy about it. In his last appearance he persuades his viewers to shout out of their windows “I’m as mad as hell, and I’m not going to take this anymore!”

I want you all to do the same thing. We need to rise up against Big Pharma because there is a “new kid in town.” Actually, it’s a very old kid; it’s been around for almost 5,000 years and has incredible healing benefits with no side effects. Yes, I am talking about marijuana. Cannabis oil is finally being recognized as a viable alternative to prescription meds. And Big Pharma don’t like it one little bit. They have successfully quashed cannabis research for decades in this country. But, that seems to be changing…way too slowly.

So, where am I going with this and when do I get to talking about fibromyalgia, you might ask? I’m getting to it now. For those of you who don’t know anything about fibromyalgia, it is a poorly understood disorder that affects women disproportionately and often is debilitating due to constant deep tissue pain, fatigue, irritable bowel syndrome, headaches and sleep disorders. It is so debilitating that fibromyalgia sufferers describe it in these terms;

“Having fibromyalgia is a life sentence.” Another said “One simply cannot have a productive life living with this disease.”

It has only recently even been recognized as a “real disorder” and was thought to be a psychosomatic condition experienced by “hysterical women.” Woo hoo! It’s a real disorder, say real doctors…there’s progress. About 5 million Americans suffer from it. *edit*

Here’s the story. There are 3 prescription meds currently on the market for fibromyalgia; Cymbalta, Lyrica and Savella. We’ve all seen the ads for Cymbalta and Lyrica, since they advertise the crap out of both these drugs. Not terribly effective, though. With Cymbalta, only 8% of users rated it as “very effective” and 60% said it did “not work at all.” With Lyrica, it was 10% yay and 61% nay. If these were TV series, they would have been canceled already with that success rate. And then there are the side effects; as we call it in our household “Tacoma or Death.” Get it?

Here are just a few of the side effects listed on a bottle of Lyrica:

1. Serious, even life threatening, allergic reactions
2. Suicidal thoughts or actions in about 1 in 500
3. Swelling of hands, legs and feet, serious for those with heart problems
4. Dizziness, blurred vision, weight gain, sleepiness, trouble concentrating, dry mouth and feeling “high.”

In my opinion, if you are going to “feel high” on a drug that doesn’t even work and costs an arm and a leg, you might as well use marijuana. Amirite or amirite?

In a survey of 1,300 subjects, conducted by The National Pain Foundation, 379 subjects said they had used cannabis therapeutically and 62% rated it as “very effective” with only 5% rating it as “not working at all.”

If you still need more hard facts, because damn it, we’re Americans and that’s what convinces us, in 2006, some cool German scientists did a study and determined that all the participants who completed the trial reported significant reductions in daily pain and electronically induced pain.

While no treatment works for everyone, many fibromyalgia sufferers credit cannabis use with “giving them their lives back.”

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Full Article: Cannabis relieves fibromyalgia pain
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Utah: Governor Herbert Says He’s Considering Legalizing Medical Marijuana

Gov. Gary Herbert said Thursday he’s open to legalizing marijuana in Utah for medical use.

“I’m open to the idea of medical marijuana and the discussion of how it can be used as a medicine based on science, and making sure we have good, collaborative efforts so we can answer the questions that are out there,” the governor said.

Herbert said during the taping of his monthly news conference on KUED Ch. 7 that the state has “a history of looking at opportunities, for medical purposes, to bring substances on board that maybe historically have not been traditional medicine.”

He cited cannabis oil, approved by lawmakers a year ago, as “helping people who have had seizures, and seems to be demonstrating scientifically there is some benefit.”

Later, the governor told KSL and the Deseret News in an interview he has “always been open to the discussion” about legalizing medical marijuana but didn’t like the “surprise piece of legislation” introduced near the end of the 2015 Legislature.

The bill to legalize cannabis use for medical purposes, sponsored by Sen. Mark Madsen, R-Saratoga Springs, failed in the Senate by a single vote. Madsen has said he plans to bring it back in the 2016 Legislature.

During last session’s debate over Madsen’s bill, the governor said he wanted to avoid the “slippery slope” of legalizing medical marijuana because of concerns that it could “morph” into recreational use.

“I still have those same concerns,” Herbert said in the interview. “I certainly don’t want to go down the slippery slope” of recreational users gaining access by claiming a headache and “Dr. Feelgood is the one out there distributing the medicine.”

Madsen’s bill, the governor said, raised a lot of questions but offered no answers.

“It was a concept,” he said, of allowing marijuana to be used to treat “medical issues based on good science. OK, what’s not to like about that? We just want to make sure that’s really the focus.”

Madsen said in a phone message on Thursday that, “obviously, I’m pleased that the governor’s perspective seems to be moderating on medical cannabis.”

An opponent of legalizing medical marijuana, Sen. Allen Christensen, R-North Ogden, said he believes the governor’s statement will encourage more support for future attempts.

“I think that’s a political statement,” Christensen said of the governor’s willingness to look at legalization.

Christensen said he opposes medical marijuana because the state will “lose control of it. It will be used for excuses right and left. It will be abused. We might as well make it recreational marijuana.”

The Libertas Institute welcomed Herbert’s statement Thursday, tweeting, “We’re pleased to note that (Herbert) is now supportive of a well-regulated medical cannabis program.”

The Libertarian-leaning institute that bills itself as “advancing the cause of liberty in Utah” has scheduled a forum on medical cannabis at Weber State University on May 19 featuring Madsen and Salt Lake County District Attorney Sim Gill.

Madsen, who said during the legislative session he had traveled to Colorado to try cannabis tinctures and candies to relieve his chronic back pain, appeared in a video released last month by the Drug Policy Project of Utah promoting legalization of medical marijuana.

At Thursday’s KUED news conference, the governor also discussed the Utah GOP’s efforts to ensure he and Republican candidates will have their party affiliation listed on the 2016 ballot.

Herbert said he agreed with a proposal to have Republican candidates attest to their support of the party’s platform, but didn’t approve of screening candidates through what he called a “purity panel” or charging them fees.

The governor said complying with SB54, a law limiting the power of political parties to control the nomination process, is “an emotional issue” that has caused divisiveness within the GOP.

“I think we’re headed in the right direction,” Herbert said of the party’s efforts to make the changes needed to become a qualified political party that can advance candidates to the ballot. “I expect there to be a resolution.”

 

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Full Article: Gov. Herbert says he’s considering legalizing medical marijuana | KSL.com
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Family Relocates To Colorado For Legal Cannabis, Says New Tennessee Bill Falls Flat

A medical marijuana bill signed into law in Tennessee is not adequately benefiting many of the patients it’s intended to help.

Some Tennessee families that moved to Colorado for medical marijuana say the bill’s limitations keep them from being able to move back.

This is true for Millie Mattison.

The 3-year-old has battled Epilepsy her entire life. Before medical marijuana, she was having 300 seizures a day.

“I don’t know if she would be here. That probably is the scariest thought. We highly suspect that she would not have made it,” says Millie’s mother, Nicole Mattison.

The Mattison family sold their business and moved their family last year from Tennessee to Colorado, where Millie’s medicine is legal. They’ve waited for Tennessee to follow suit, and Monday, Governor Bill Haslam signed it into law, effective immediately.

But the bill only allows a small portion of Tetrahydrocannabinol, commonly known as THC, the active ingredient in marijuana.

Millie requires a much higher dosage, keeping the family in Colorado.

“We would love to come back. Unfortunately, it would just require a larger bill. It would need to be more encompassing,” says Mattison.

Senator Todd Gardenhire is a co-sponsor of the cannabis oil bill, which allow patients to bring cannabis oil into Tennessee for treatment, but only if it is legally obtained elsewhere.

He says it’s unlikely they’ll make changes to those limitations anytime soon.

“I don’t think there’s an appetite to do that. We want to see how this works first,” says Sen. Gardenhire.

Millie’s mother says the next step should be legalizing medical marijuana in its entirety to help so many more patients who need it.

“So many people can benefit from this product. It’s a little disheartening knowing that others can’t, but I’m glad at least a portion of patients will be able to benefit,” says Mattison.

The bill also creates a misdemeanor offense for possession of cannabis oil without proof that it was obtained legally.

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Former NFL Star Says Weed Is A Viable Painkiller For Players

A former NFL player thinks current players should choose marijuana as a painkiller.

Lingering pain from crushing hits is part of the game, said Greg Patrick, who played for the Detroit Lions in the early ‘90s.

“We were given painkillers when stuff hurt,” Patrick said.

His brother, who also played professional football, knows three teammates who became addicted to the pills, Patrick said.

“Why not use something that grows in the earth and that does a better job of [relieving pain],” Patrick said.

He said marijuana is a viable alternative pain reliever. Patrick is now the marketing director at American Green, a Tempe-based medical marijuana company.

“Had I known [in my playing days] what I know now, you can bet I would have been looking into” marijuana use, he said.

His conservative upbringing kept him away from all drugs, Patrick said. He does not smoke marijuana now, but regularly uses some of its extracts as a health aid, he said.

A story on the website Bleacher Report quoted an unnamed NFL general manager who estimates that up to 40 percent of the current NFL draft class regularly uses marijuana.

The Denver Broncos drafted Shane Ray in the first round Thursday, after he was cited on Monday for marijuana possession. The defensive end, who played for the University of Missouri, apologized for the incident.

Current NFL players face a suspension after several positive marijuana tests.

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Full Article: Former NFL player: Weed is viable painkiller for players – ABC15 Arizona
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‘Vitamin Weed’: Neuroscientist Says Cannabis Oil Slows Down Aging Process

Neuroscientist Dr. Michelle Ross says she believes everyone can benefit from ‘vitamin weed’, or daily cannabis oil use. “Cannabis is the key to unlocking preventative medicine,” says neuroscientist Dr. Michelle Ross.

“It helps protect your DNA from damage so it can actually slow down the aging process. I think everyone should use cannabis oil, you should learn about it, you shouldn’t be afraid.”

In a clip from the Reset with Amber Lyon podcast, Dr. Ross says she takes Rick Simpson Oil on a daily basis to achieve endocannabinoid homeostasis.

Endocannabinoids are your brain’s natural marijuana and play a major role in overall health including the regulation of appetite, anxiety control, blood pressure, bone mass, reproduction, and motor coordination.

Deficient cannabinoid levels may be the underlying cause of numerous health conditions alleviated by cannabis.

Dr. Ross is a former drug researcher for the National Institute on Drug Abuse, turned medical marijuana advocate.

 

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Full Article: ?Vitamin Weed?: Neuroscientist says cannabis oil slows down aging process – Reset.me
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Scientists Find Out Why Marijuana Gives You The Munchies

Why does smoking marijuana give people the munchies? Researchers at Yale University got dozens of lab mice stoned in order to find out.

Previous scientific studies (and anecdotal evidence) show that when people and animals are exposed to the active ingredients in marijuana they are driven to eat long after they should feel full.

“Everyone knows that if you smoke dope after Thanksgiving dinner you will still go back and eat more — sometimes much more,” said Tamas Horvath, a professor of neurobiology at Yale. “We were interested to find out why.”

Horvath’s group studies brain circuits that control hunger and satiety. In 2011, German researcher Marco Koch joined the lab to study how marijuana interferes with the body’s ability to feel satiated.

Koch hypothesized that the active ingredients in pot turn off a set of neurons in the hypothalamus that play a central role in inhibiting hunger. Those neurons are known as POMCs.

But when Koch went to prove this in the brains of stoned lab mice he found that the exact opposite seemed to be true.

(If you are imagining researchers holding joints in a cage filled with mice, think again. The mice were injected with a chemical that binds to the same receptors in the brain as marijuana. Still the researchers believe the mice probably did get high.)

Koch was surprised to find that instead of the POMCs being turned off in the mice, the neurons appeared to be turned on even more.

“It made no sense,” Horvath said.

At first Horvath wasn’t sure Koch had collected the data correctly, but after further analysis he concluded that the initial findings were right.

“And then we started to get excited,” he said.

To see what was going on, the researchers used a technique that allowed them to artificially turn off the POMCs in the brains of the mice. When they gave the mice the chemical marijuana after turning off the POMCs, the mice ate less.

Next they artificially boosted the action of the POMCs, and the mice ate much more.

“The question became, how can it be that the same neuron that promotes satiety starts to promote hunger when it is exposed to cannibinoids?” Horvath said.

Further study revealed that cannibinoids, the active agent in marijuana, can change what kind of chemical the POMC neurons release. When a mouse is drug-free, its POMCs release MSH, a chemical that suppresses appetite. But when you give the same mouse marijuana, its POMCs start to release the opioid beta-endorphin, which promotes hunger.

“The whole circuitry turns upside down,” Horvath said.

The results of the study were published Wednesday in the journal Nature.

In a News and Views article accompanying the study, researchers Sachin Patel and Roger D. Cone of Vanderbilt University Medical Center in Nashville write that the most notable part of the findings is that marijuana can change a brain circuit from being one that tells the body it’s full to one that tells the body to keep eating.

“The emerging picture of the arcuate POMC system is that of a circuit that can sense a wide array of signals and can then produce highly discriminatory responses through a differentiated set of circuits and molecular signaling mechanisms,” they write.

In other words, it seems the POMC system may be more complicated than researchers originally thought.

Horvath said the study posed almost as many questions as it answered. For example, what physiological purpose is served by the POMC neurons’ ability to switch from repressing hunger to amplifying it? They also wonder whether the POMCs of people who are obese or who have diabetes may have altered functionality.

And finally, they want to know what all this has to do with being high.

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Full Article: Scientists find out why pot gives you the munchies – LA Times
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The California Residency Requirement For Medical Marijuana Is A Myth

The California residency requirement for legal medical marijuana doesn’t exist — if we don’t want it to.

That’s the conclusion of at least two Bay Area lawyers, who say the medical cannabis industry is widely misinterpreting state law. Thursday, veteran cannabis attorney William Panzer confirmed via phone the contents of a talk given by another attorney Lauren Vazquez to a group of cannabis entrepreneurs on Jan. 22.

“No, there is no residency requirement,” Panzer said. “It’s just misinformation.”

The vast majority of cannabis-specialized physicians’ offices and medical marijuana dispensaries enforce such a rule, essentially turning away potentially tens of millions of dollars in business each year by enforcing the non-existent rule.

Very few doctors and collectives will serve out of state patients, patients confirm, though the drug would be quite popular among medical visitors. One in 20 California adults are estimated to have used medical cannabis for a “serious” condition, and 92 percent of them are estimated to have thought it was helpful, recent polls indicate.

Vazquez said in her remarks to about 30 cannabis entrepreneurs that the preface to the 1996 Compassionate Use Act mentions “Californians”, but the preface has no legal value. It’s window dressing. The California Supreme Court confirmed the preface doesn’t count in a split ruling in 2013 that allows cities and counties to ban any medical cannabis activity.

“It’s a legal grey area,” said Brendan Hallinan, a San Francisco lawyer that also advises the industry. “If someone shows up with a passport and is in town to buy marijuana that’s not enough. If they can show some proof of temporary residency for treatment and if they avail themselves of California law, I think you should be afforded protection.”

“Why not?” said Panzer. “My wife hurt her ankle in Florida and had to go to the doctor for pain pills. They didn’t say, ‘Sorry, you don’t live in Florida.’”

So — say you are or know a patient coming to California for breast or brain cancer treatment and you want cannabis, which is an official form of Integrative Oncology. If their primary care physician recommends cannabis, great. But chances are, patients are going to have to call around to specialized cannabis clinics, or even advocacy groups to get linked up with a doctor who will write them a recommendation. “I know of a few but they also want to stay private,” said Vazquez.

From there, patients need to start calling collectives and dispensaries in the area, asking if they’ll serve an out-of-state patient. Most follow what’s now a debunked rule. “Most dispensaries are not going to let someone in who doesn’t have some sort of physical connection with California,” said Hallinan.

“It’s just one of those things that somebody did and it got copied and everybody started doing it and now people are turning away a sizable percentage of their customers and patient base for no good reason,” said Vazquez.

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Full Article: Smell the Truth » Debunked ? the California residency requirement for medical marijuana is a myth
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State Approves Boston’s First Medical Marijuana Dispensary

State health officials on Friday approved a highly coveted license for Boston’s first medical marijuana dispensary, selecting Patriot Care Corp. to operate a facility near Downtown Crossing. The company, which was already provisionally approved to open a dispensary in Lowell, also won permission Friday for a location in Greenfield, making it the only company positioned to run three dispensaries in Massachusetts.

In addition, state officials said they would allow another company to move forward with plans to open dispensaries in Brookline and Northampton — a decision that drew sharp criticism from some critics who allege the company has received special treatment. The Patrick administration put the plans of the company, New England Treatment Access, on hold in August after the Globe reported that its chief executive had falsely claimed to be a college graduate on the firm’s applications to the state.

The licensing process has been slowed by repeated disclosures, from media and competing applicants, about questionable backgrounds of some company officials and misrepresentations. No dispensaries have opened, despite state officials’ initial prediction they would open by this past summer. On Friday, Karen van Unen, chief executive of the state’s medical marijuana program, said in a news release, “I am pleased with the steady progress we are making and expect the first dispensaries to open later this winter.”

Two other companies received permission Friday from state health regulators to move forward with medical marijuana dispensaries: Coastal Compassion in Fairhaven and MassMedicum in Taunton. To date, Massachusetts has conditionally approved 15 applicants across the state, which still must pass inspection and win local zoning approval before they can begin growing and selling marijuana. No dispensaries have been selected for the counties of Hampden, Berkshire, Dukes, and Nantucket.

“We are concerned about underserved counties,” van Unen said in a brief telephone interview. She said the state hopes to start accepting more applications for dispensaries in the spring. Patriot Care spokesman Dennis Kunian said the company does not have a timeline on when it might be open for business in Boston. He said company officials have spoken to some Boston city councilors and neighborhood groups about its proposed dispensary at 21 Milk St. and will begin the process of seeking approval from city officials.

“We have a lot of work to do and we are very excited,” Kunian said. “We want to do the city proud.” Patriot Care has faced legal challenges and questions about its dispensary operations in Washington, D.C., and Arizona. The company also applied for a license in Connecticut, but was not selected by regulators there.

Boston Mayor Martin J. Walsh had urged the state to restart the dispensary process earlier this year, following allegations that some winning applicants provided false or misleading information that made it appear that they had had support from elected officials. On Friday, Walsh’s press secretary, Kate Norton, issued a statement saying, “The City will work with our partners at the state level to ensure that any dispensary in Boston complies with all local regulations and guidelines.”

The state announced Friday that it has allowed New England Treatment Access to proceed with plans for dispensaries in Brookline and Northampton, months after the Patrick administration said it halted the plans because the Globe had reported the company’s director, Kevin Fisher, falsely claimed to be a college graduate.

At the time, the governor said, “I’ve said before: If you lie on the application, that is, from my perspective, a nonstarter.” Van Unen said the state decided to let the company keep its conditional approval partly because Fisher had resigned and was no longer associated with the company. “We feel NETA is in a position to meet the standards we expect them to meet,” she said.

The decision angered a group of Brookline residents who had lobbied regulators to remove the company from consideration after the problems with Fisher’s resume were revealed. “It undermines the whole process that someone can lie on the application and, for reasons that aren’t clear, be reconsidered,” said Gordon Bennett. “What’s changed?” he asked. “If they were put on hold earlier, why are they being taken off hold now?”

Dot Joyce, a spokeswoman for NETA, said the company “remains well prepared and educated on this emerging industry with some of the most knowledgeable and experienced people in the fields of medicinal marijuana standards and practices.” The state’s selection progress has been plagued by controversy for the past year. Voters approved a ballot initiative in November 2012 that legalized marijuana for medical treatment. The state is authorized to select up to 35 nonprofits to open dispensaries around the state, including at least one, but no more than five, in each county.

In January, state regulators announced that they had granted preliminary approval to 20 of 100 applicants seeking to open dispensaries. But the state launched a more thorough examination of the companies after the media and losing applicants raised concerns about misrepresentations, financial arrangements, and conflicts of interest involving several of the companies, as well as the backgrounds of their principals. A number of lawsuits were filed against the state by losing applicants.

In June, state health regulators announced that they had eliminated nine of the 20 remaining applicants, including a company led by former US Representative William Delahunt that had proposed dispensaries in Taunton, Plymouth, and Mashpee. Reasons for rejection ranged from questionable corporate structures that appeared to violate requirements that the companies operate as non-profits; misrepresenting local support; and omitting one investor’s drug conviction.

Dr. James Kurnick, chief executive of MassMedicum, said his company was relieved to be selected for Taunton. “It’s been a long process, and we have put lot of time, money, and effort into this,” said Kurnick, a cancer researcher and part-owner of two biotechnology companies. “We are a medical group, and we hope we can do this in a medical fashion.”

Tim Keogh, president of Coastal Compassion, said the company hopes to open its Fairhaven facility in fall 2015. “I want to assure the town of Fairhaven and the local community that our top priority is the safety of the patients and the public and we pledge to work transparently throughout the process.” State health officials on Friday approved a highly-coveted license for Boston’s first medical marijuana dispensary, selecting Patriot Care Corp, which is already set for a similar facility in Lowell.

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Medical Marijuana: Florida Parents Fight To Help Children Suffering With Seizures

Nicolas Peruyero was 8 years old, blind and unable to walk or talk when his mother saw a documentary about the benefits of medical marijuana and its promise to reduce seizures. For a few moments, Nancy Peruyero imagined what Nicolas’ life might be like without the relentless myoclonic seizures every day. And for the first time, she allowed herself to hope, an emotion she had rarely felt since that August afternoon in 2009 when her youngest son was diagnosed with Batten disease, an unusual neurological disorder marked by seizures, loss of motor skills and mental impairment. His life expectancy with the disease is no more than 12 years. He turned 9 on Oct.2.

“We want to try medical marijuana in hopes that it will calm his seizures and help him become more alert and sleep better,” said Peruyero, 41, who first watched the CNN documentary Weed about a year ago. “We want to be able to have all our options. For us, this is a quality of life issue. What parent would not do everything they could to help their child?” Politics aside, for families with medically needy children, Florida’s march into the world of medical marijuana — fraught with differing opinions by legislators, medical professionals and patients, and little scientific evidence — is personal, built upon the anecdotal evidence of cannabis’ healing properties. It’s not a miracle drug, they say, but rather a compassionate alternative treatment.

These families are faced with balancing the hope that expanded medical marijuana will become available if Florida voters pass a constitutional amendment on Nov.4 and the daunting reality that even with that approval, the marketplace could be a long time coming. For Peruyero, doing “everything” for her son means access to the so-called Charlotte’s Web non-euphoric strain of the drug, approved for medical use by the Legislature last spring for children with cancer, intractable seizures and other serious conditions. Everything also means the approval of Amendment2, which would allow other strains of medical cannabis to be used. Without the range of strains that Charlotte’s Web and Amendment2 would jointly provide, some families are even considering leaving Florida for other states such as Colorado and California where medicinal pot is allowed.

“We know this is experimental in the sense that we don’t know if Charlotte’s Web will help us. But we will try,” Peruyero said. “What we want is the ability to be able to try the other types, too.” The possibilities of medical marijuana have made advocates of these parents, some gathering signatures to put the measure on the ballot. Some are part of Facebook-powered circles where the posts and discussion are all about the latest research, the drug’s therapeutic benefits and personal stories of children already being treated with various strains in other states — as chronicled in the documentary Weed. Dr. Sanjay Gupta’s CNN special, which first aired in August 2013, featured Charlotte Figi, a little girl in Colorado who was having having 300 seizures a week. She began using medical marijuana as a treatment, and her seizures were reduced to two or three a month.

But there is still hesitation among some medical professionals who say the science has not caught up with the movement. “I don’t want to have children with these seizures or want their families to be faced with that kind of pain,” said Dr. Judith Schaechter,interim chair of Pediatrics at the University of Miami Miller School of Medicine. “And I know these families are hoping this is the right thing to do. But I also want to be cautious and use science and clinical trials first to see what we are working with.”

With so many states considering legalization, the American Epilepsy Society issued a position statement: “The recent anecdotal reports of positive effects of the marijuana derivative cannabidiol for some individuals with treatment-resistant epilepsy give reason for hope. However, we must remember that these are only anecdotal reports and that robust scientific evidence for the use of marijuana is lacking. The lack of information does not mean that marijuana is ineffective for epilepsy. It merely means that we do not know if marijuana is a safe and effective treatment for epilepsy…”

The use of medical marijuana is legal in 23 states, including Florida, and the District of Columbia. Florida joined the movement with the passage of the Compassionate Medical Cannabis Act earlier this year. The new law allows five medical marijuana dispensaries in the state to cultivate marijuana low in tetrahydrocannabinol, or THC, the chemical that provides a high, but high in cannabidiol, or CBD, which can calm seizures. Once the dispensaries are licensed, the plants will be processed into an oil form of the strain called Charlotte’s Web and taken orally.

The amendment on the November ballot is much broader. The Florida Right to Medical Marijuana Initiative, commonly known as Amendment2, was championed by the United for Care grassroots campaign. Doctors and patients must be certified before receiving marijuana through authorized dispensaries.

The amendment, which requires a 60 percent majority to become law, names nine eligible medical conditions: cancer, glaucoma, human immunodeficiency virus infection (HIV), acquired immunodeficiency syndrome (AIDS), hepatitis C, amyotrophic lateral sclerosis (ALS) or “Lou Gehrig’s disease,” Crohn’s disease, Parkinson’s disease, and multiple sclerosis. It also includes other conditions in which a doctor could determine that the use of medical marijuana would likely outweigh its potential health risks.

Those against the amendment say that its broad language and loose regulation could allow doctors without appropriate training to prescribe the marijuana for medical uses. Others believe passage of the measure would make way for widespread abuse of the drug. Opponents include the Florida Medical Association. But if the amendment passes, the Florida Legislature ultimately will decide what rules to impose to protect the public in the distribution of medical marijuana.

Even if both laws are in place, it’s unclear how long it will take before the medication is available. The earliest is possibly next summer after the regulations are established and nurseries are selected to begin harvesting the marijuana crops. “My daughter suffers every day, and there are lots of other families in the same situation. It’s painful to watch and painful not knowing if the next seizure is the one that kills her,” said advocate Seth Hyman, among the most vocal parents supporting both measures. Hyman, whose daughter has a rare genetic disorder, testified before a Florida House subcommittee in January. “This is a really long process, and we have to wait while our children are in jeopardy. And God forbid Charlotte’s Web doesn’t work and Amendment2 doesn’t pass giving us other strains to try. Then what?”

Inspired to try
Every week, Jose Buraschi makes the hour-long drive from his home in South Miami to a pediatric nursing facility in Plantation to visit his son, Alessio. Though the 6-year-old is asleep on this visit, Buraschi holds his son’s hand and talks to him about the family, about his mother and two brothers, about a life without him there.

“I want to believe that he knows our voices, that he knows who we are,” Buraschi said, tearfully. Alessio had his first seizure at 3 months old. His condition deteriorated until he was having 50 to 300 seizures a week. Doctors eventually diagnosed him with multiple conditions including a brain disorder, cerebral palsy and scoliosis. He is a quadriplegic, partially blind and unable to talk. Last year, his parents moved him to Kidz Korner so he could be monitored around the clock.

“He slept in the room with us, right by us. Twice, we woke up and found he had vomited on himself. Our greatest fear was he would choke and we would lose him,” said Buraschi, a father of three boys including Alessio. Buraschi became a believer of medical marijuana after learning about Charlotte Figi, the Colorado girl whose parents used the extract of marijuana plants to treat her Dravet syndrome. Her seizures subsided, and Charlotte became the face of the movement and inspired the Charlotte’s Web brand name of a particular high-CBD/low-THC strain.

“Charlotte’s story caught my eye. She had seizures. Alessio has seizures, so I am thinking maybe it will work,” said Baraschi, who helped to gather signatures for the petition to put Amendment2 on the ballot. Alessio is taking nine medications. He has already been on a special diet and had a pacemaker-like device implanted in his chest to reduce seizures. Doctors have told his parents that brain surgery is not an option, either.

“There is a chance it might not work,” Buraschi said. “Our last resort really could be marijuana. We have heard so many successful cases, it’s something we have to try for our son.” For Jacel Delgadillo, Nov.4 will determine her next address. The Miami mother of a toddler with Dravet Syndrome — a form of intractable epilepsy — is planning to move to Colorado Springs if Amendment2 does not pass.

“I don’t want to leave my home and my family, but I feel like I have to be able to give Bruno a fighting chance,” said Delgadillo, who also has an 8-year-old daughter. “It won’t be easy, financially and without the support of my family.” Bruno’s story echoes the others: born without complications, then sudden onset of seizures, followed by an anxiety-ridden stretch as doctors tried to determine what was wrong. Eventually, the diagnosis of something neurological in nature and an uncertain prognosis.

After several trips to Colorado, Delgadillo applied for and received a medical marijuana license and card in April, which allows Bruno to be treated with the oil to reduce his seizures. Last week, she traveled to California to research that state’s cannabis program. Since he was three months old, Bruno has been on a series of medications. Developmentally delayed and now 3, Bruno cannot speak, walk or sit up on his own. The seizures, big and small, come throughout the days, sometimes reducing him to tears.

If Delgadillo moves to Colorado, she will become a medical refugee of sorts, joining a growing number of parents from across the nation with sick children who believe they have run out of pharmaceutical options. They include Francis and Cristi Bundukamara, who left their lives behind in Miami last year — she was a nurse practitioner and Miami Dade College professor, he was a South Dade Senior High teacher and football coach — to have their children treated with medical marijuana. Their two youngest children, Reggie, 15, and Miah, 14, have dentatorubral-pallidoluysian atrophy, or DRPLA, a rare, degenerative and terminal brain disorder. The siblings both have seizures, although Reggie’s condition is more severe. He is now unable to walk or talk and requires constant care.

“When we first heard of medical marijuana as a treatment, we were thinking of it as palliative. It took four or five friends calling and emailing about it and then watching the CNN special for us to think of it as an active treatment,” said Cristi Bundukamara, 42. “I saw that special in September. We moved in November. My son is very, very sick — we needed something quickly. I wasn’t confident that it was going to come to fruition in Florida. Waiting a year for it to pass and then another year to establish the grows, we didn’t have that kind of time.”

Within a month of starting on Charlotte’s Web oil, the seizures were reduced in both children by about 50 percent. They were also able to reduce Miah’s medication by about 70 percent. Then the numbers leveled off. “We are still trying to figure out the ratio that works for my children. Last month, for example, we began adding more THC for Reggie and he only had three grand mal seizures,” she said. “It’s truly experimental.”

If not cure, a comfort
Back in Miami, Peruyero was just beginning to share Nicolas’ story at B&V Thera-Pro Associates, a center offering physical, speech and occupational therapies, when he began to choke during a therapy session. She quickly grabbed her portable suction machine to draw the fluids from his mouth. “He has lost the ability to swallow due to the illness, so all the secretions pool in his throat and then he coughs it up eventually. We have to catch it so he does not choke,” she said calmly. Nicolas was born without complications. He was walking and learning to speak, but at 3 years old, he suddenly became clumsy — the result of seizures. “He would collapse and fall to the ground and pick himself up, then fall again,” she said.

An MRI showed brain atrophy, meaning a loss of neurons and their connections. He started having seizures, small and large. It took about a year for doctors to diagnose him with Batten disease. Now Nicolas has lost most of his motor skills, requires 24-hour care and takes 29 medications daily, including four to treat his seizures. “This is a difficult stage for us with Nicolas. We know the medical marijuana will not cure him,” Peruyero said. “But maybe it will extend his life or make it better for him during the time he is here.”

News Moderator – The General @ 420 MAGAZINE ®
Source: Miamiherald.com
Author: Audra Burch
Contact: Contact Us
Website: Medical marijuana: Florida parents fight to help children suffering with seizures | The Miami Herald

Saving Sydney: A Mother’s Fight For Medical Cannabis

Julie Michaels remembers the day her daughter lost her smile. At 6 months of age, Julie had noticed her daughter’s skills were regressing, but the lack of a smile was the most noticeable of all.“It was probably the hardest thing as a parent, just for her to be expressionless – no joy there at all,” she said of her daughter Sydney Michaels. “It was really hard.”

Dravet Syndrome — a rare and catastrophic form of intractable epilepsy that begins in infancy — was the culprit behind the latest development. “If she’s seizing a lot, we see regressions,” Michaels, of Connellsville, said. “We’ve had at least three, maybe four regressions since this whole thing started, where she has to go through a time of regaining skills that have been lost.”

New Year’s Eve 2009
Sydney Michaels suffered her first, of what would become thousands of seizures, when she was three days shy of turning 3 months old. “I had her in the bath at the time, and all of a sudden I noticed her arms and her legs were shaking,” Julie said. “And at that time, I thought maybe she’s just cold in the bath.” Three days later, on New Year’s Eve, a second seizure took hold of Sydney. She was blue, convulsive,” Julie said. “We literally thought she was dying. It was pretty terrifying. When 911 finally got here she had been seizing for well over 20 minutes.” Later, Julie would learn that bathing Sydney actually triggered the seizures. “I swear the girl had no more than 20 baths that first year of life once we realized that every time we put her in the bath she had a seizure,” she said.

In limbo
Other triggers, like heat and light, came along later after Sydney’s Dravet diagnosis at 11 months of age. But it was a grueling seven months before Julie and her husband Paul, were given any sort of clarity. They kept trying different drugs with her and nothing was helping,” Julie said. “She got to the point where she was on three different drugs at six months old.”

Throughout the seven-month period in limbo, where multiple drugs were introduced, and multiple trips to a variety of doctors were made, Julie and Paul still had hope that Sydney would one day grow out of the seizures, especially because Paul suffered from epilepsy in childhood. “We were always given that hope that childhood epilepsy is common, and a lot of children tend to grow out of seizures,” Julie said. “There was one doctor one time who said to us, ‘your child’s seizures are way too severe,’ he said ‘she’s not growing out of this.’ We both left there kind of shell-shocked, because everyone else is painting this happy picture, like, ‘oh, this is temporary, and it’s going to go away.’ Suddenly there was this doctor who said no, this isn’t going away.”

A special diet
Four years later, daily life is still a struggle for Sydney, where she has to avoid light by wearing an eye patch on one eye, rapid temperature changes, water, and normal foods that any other child enjoys.On a hot summer morning in July, Sydney was patiently sitting in the darkened, cool living room of her home, as her mother administered her her special, ketogenic diet through a feeding tube.

“She’s been on the diet since she was 10 months old,” Julie said. “I asked them (her doctors), what’s the likelihood of this diet helping her with this seizure control? They said they have never had a patient with Dravet Syndrome on this diet so we didn’t know. At least at Pittsburgh Childrens, Sydney was the pioneer down there, for being the first Dravet kid to be on the diet.” The diet — a high-fat, adequate-protein, low-carbohydrate diet — has worked wonders for Sydney, although at times, she struggles to finish the meals set before her. “Sometimes, she can be patient,” Julie said. “But a lot of times, mornings are really rough for her.” Before the diet, she was having three to five Grand mal, or tonic-clonic seizures every week, and almost all of them required rescue drugs, Julie said. The diet took her from three to five tonic-clonics a week to one every couple of months.

Trial and error
As time went on, Julie and her husband Paul, learned more and more about the rare disease that had taken over their daughter’s life. They learned a great deal through trial and error, as well as from other parents in support groups they joined. “There seems like there’s no standard one path,” Julie said. “What works for one Dravet kid, doesn’t work for the next Dravet kid. You constantly feel like your kid is a lab rat or a guinea pig — ‘let’s toss this at them and see what happens.’” Dr. Paul Means of Connellsville, Sydney’s primary care physician, said he feels as if medicine has failed her.

“I hate to say medicine is failing them (Dravet children), but, we kind of are,” Means said. “We’re not really controlling her (Sydney’s) seizures they way they should be controlled. We’re using medication that could have potential serious side effects. It’s the best we have right now. But, if there may be something better, I think we should look into it.” And that’s where medical cannabis comes in.

Regaining her smile
While Julie can look back on that day a few years ago when Sydney stopped smiling, she can also remember the day her daughter got her smile back. “There was a good year and a half when all of that was gone. We weren’t sure if we were going to get it back again. But somewhere around 2 years of age, the smile came back. And she started to develop a personality again,” Julie said. She’s hopeful to see even more improvement in her daughter’s development with the help of medical marijuana.

“I can’t even imagine how much it would help her quite honestly (developmentally),” Julie said. “A lot of the parents in Colorado who are using this with their children have found that their children’s triggers have been improved. The heat, and the lights, temperatures of water, no longer bothers their kids. They can go out and play, and act fairly normal.”

The medical marijuana being used in Colorado has strong anti-inflammatory agents, a high number of antioxidants, as well as weak levels of tetrahydrocannabinol (THC), the psychoactive ingredient for getting high.“We hope she has the same outcome as some of these other children,” Means said. “The reports from these parents have been pretty impressive. We wish we had more solid studies, but at this point, with medical marijuana being such a controversy, our officials are not letting us use it, or even let us trial it in any meaningful way to know. And I think that’s the key — we’ve got to get the approval to at least try it.”

Michaels has worked in concert with a group of other moms – moms whose children also suffer from epilepsy — for the past year, rallying to get Senate Bill 1182 passed in the Pennsylvania State Senate.Julie made several trips to Harrisburg with Sydney, imploring state Senators to hear their story. “There was no big lobbying in Harrisburg. There were none of the big guys behind this, there was no big money behind this,” said Sen. Mike Folmer, primary sponsor for SB 1182. “These are just everyday folk who are fighting for their health, who wanted to have an opportunity to have one more arrow in their quiver to fight their disease that I believe they have the God-given right to do. These are amateur, but outstanding and effective lobbyists.” Pittsburgh NORML and PhillyNORML — groups that have been pushing this issue for years — have never come this close.

“They haven’t gotten anywhere until this past year when the moms of these kids have stepped up and said ‘hey look, this can help my child, this can save my child,’” Julie said. “People are more willing to start looking at this when we’re talking about saving children. Without the kids there, I don’t think we’d be even remotely close to where we are.” Under the bill, which is titled the Compassionate Use of Medical Cannabis Act, a state resident who possesses an access card from the Health Department, would be able to use medical marijuana to treat his or her condition. A handful of drug delivery methods that do not involve smoking it would be permitted under the bill, including extracted oil, edible products, ointments and tinctures. The latest version of the bill no longer includes vaporization of cannabis as a method of treatment delivery, which is a major concern for Julie and her fellow moms. An oil is not going to help a seizing child, she said.

“If they are having a status epileptic seizure, and their benzo drugs aren’t working to pull them out of it, we could vaporize the THC with an oxygen mask, and that has shown to be very effective in stopping these status seizures,” she said. “You can’t give an oil or an edible to a seizing child. Plus, it’s the fastest and the most accurate form of dosing to get it quickly into the body. If you’re eating something orally, that takes 30 minutes or more to start getting into your system.” Despite the amendments, when the bill passed last month by a vote of 43-7, Julie, and the other moms, celebrated. Although a major victory, it was only one of the three hurdles they needed to clear. The measure failed to make it to the floor of the state House this term. If it had, it would have gone to the governor’s desk for his signature — the final hurdle.

A new year
Come January 2015, the moms will need to begin their battle once again. But this time around, they’re not starting from scratch. “The good thing is, I think it’s going to go through the Senate very quickly this time, because we’ve already kind of been there and done this,” Julie Michaels said. “The language of the bill has been written …we’ve already had the hearings in the Senate, we’ve had the amendments done in the Senate, we’ve gone through all of those fights, so I think it’s going to go very quickly through the Senate, which will hopefully give us a full solid year of pushing and fighting in the House.”

Julie said the House leadership has been resistant to running the bill. She has heard that the House wants to hold their own committee hearings. And the most difficult part of the whole process has been conveying a sense of urgency to the politicians. “Any seizure could be her (Sydney’s) last,” Julie said. “You just never know. Any moment could be the last. We can’t seem to share that sense of urgency enough.” A fund has been established through PNC Bank to aid the Michaels family with medical expenses. Donations can be taken into any branch and deposited into the fund, which is called the Sydney Michaels Foundation.

News Moderator – The General @ 420 MAGAZINE ®
Source: Heraldstandard.com
Author: Amanda Steen
Contact: Contact Us
Website: Saving Sydney: A mother’s fight for medical cannabis – heraldstandard.com: New Today