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News and Research impacting epilepsy patients in Oklahoma and around the country and world.

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  Jenniafer Walters 



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Cannabis Oil Cures 8 Month Old Infant of Cancer, Dissolving Large Inoperable Tumor In 8 Months

Read the full amazing story at the link below

More doctors than consumers favor legalizing medical marijuana
Updated: April 2, 2014 09:13 AM

WEDNESDAY, April 2, 2014 (HealthDay News) -- The legalization of medical marijuana has more support among U.S. doctors than among consumers, a new survey found.

The survey of more than 1,500 doctors and nearly 3,000 consumers found that 69 percent of doctors said medical marijuana can help with certain conditions and treatments. Only 52 percent of consumers expressed that same belief.

Among doctors, 67 percent said they believed medical marijuana should be a treatment option for patients. Half of those doctors in states where medical marijuana isn't legal said it should be legalized, as did 52 percent of doctors in states considering such laws.

Support for medical marijuana was highest among cancer specialists (oncologists) and blood disorder specialists (hematologists). For those two groups, 82 percent said marijuana can provide real benefits to patients. The same percentage said marijuana should be a treatment option for patients, according to the WebMD/Medscape survey.

Among consumers, 50 percent said medical marijuana should be legalized nationwide, including 49 percent of those in states where it is not legal. Forty-five percent said the benefits of medical marijuana outweigh the risks.

Support for legalization of marijuana for recreational use was lower among both doctors (53 percent) and consumers (51 percent), according to the survey, titled Marijuana on Main Street.

Currently, more than 10 states are considering bills to legalize medical marijuana.

Peer-review research on the benefits of medical marijuana remains limited, the report noted.

"Despite more than 20 years of anecdotal evidence about the medicinal effects of marijuana, doctors and consumers remain in search of answers," Dr. Michael Smith, WebMD's chief medical editor, said in a company news release.

"The findings of our consumer-physician survey indicate the medical community's support for the use of marijuana as a treatment option, particularly among clinical specialties that have pioneered research," Smith said.

"Yet these survey data suggest additional studies will inform decision-makers' confidence in where medical marijuana can help and where it might not," he added.

The surveys were conducted from late February to early March.

Epilepsy Foundation Teen Ambassadors from Kansas

Kansas Teen Ambassadors

Epilepsy Foundation Teen Ambassadors
From Kansas, Missouri share excitement from D.C. trip
Way To Go!!!  Thank You!
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Preliminary results of laser ablation promising for inoperable brain tumors and epilepsy

Preliminary results of laser ablation promising for inoperable brain tumors and epilepsy - See more at:



Cutting-edge procedure eliminates seizures:
By Dana Hertneky, News 9
OKLAHOMA CITY - Legalizing medical marijuana in Oklahoma will once again be on the table this legislative session. But supporters say the focus this year will be legalizing a certain formula that is said to help children. It's called Charlotte's Web, named after a little girl who had severe pediatric epilepsy and found relief from her seizures in an oil derived from the marijuana plant. There are parents in Oklahoma that believe Charlotte's Web can help their children, too, Including Krystal and Michael Cain whose daughter, 3-year-old Rayleigh, suffers from a rare genetic disorder called CDLK5, which causes epilepsy and as many as 15 seizures a day. Every seizure kills brain cells delaying development. Last month, Rayleigh had regressed to the point where she couldn't chew and swallow properly so doctors had to insert a feeding tube. They've tried 11 different medications and nothing seems to work. "We're out of options here," Krystal Cain said. Cain first heard about Charlotte's Web two years ago. "I thought medical marijuana. I would never give my child marijuana. I would never even take marijuana," Cain said. But after talking to other parents and doctors, they believe it could be the answer they're looking for. The oil is said to have anti-epileptic properties and heals the damaged brain cells. It is extremely high in CBD, which has the medicinal properties, and very low THC, the part that makes you high. "It's your kid, we're willing to try anything, and do what you have to do," said Rayleigh's dad, Michael. "But we can't do it here," Krystal Cain said. The family lobbied the Oklahoma Legislature last session to legalize medical marijuana with no success. So in the next few months they are reluctantly moving to Colorado. They are waiting for Michael's job to approve a transfer. "This is home, this is where we met," he said. The family has already met with a doctor in Colorado who has told them Charlotte's Web could help Rayleigh, just as it has other children. "There are children like Rayleigh there that are saying their first words, learning to sit up because they are seizure free and their brain can relax and start doing these things again. It's amazing," Krystal Cain said. A senate hearing on the benefits of Charlotte's Web is scheduled for next month. Supporters are hopeful to get something passed this session. Those who oppose medical marijuana say it's not medicine and supporters are just looking for a loophole to make pot legal. News9.com - Oklahoma City, OK - News
By Phyllis Zorn, Staff Writer Enid News and Eagle
The Enid News and Eagle, Enid, OK
January 18, 2014
A medical look at marijuana

By Phyllis Zorn, Staff Writer
Enid News and Eagle

— Cannabis, marijuana, weed, pot — call it what you may, but the image it brings to mind is people puffing a joint and getting high.

Oklahoma legislators will get a different look during a Feb. 12 hearing to discuss scientific evidence about the medical use of cannabis extracts, and listen to families who wish it could be obtained in Oklahoma.

The subject to be discussed has nothing to do with smoking, and it is not a substance people would use to get high. The product that will be discussed is an oil very low in THC — the psychotropic compound of cannabis that produces its notorious “high.”

Instead, the product is produced from cannabis plants specifically bred for a high level of cannabidiol — a compound with a calming effect on the brain. The United States Department of Health and Human Services has itself held a patent on cannabinoids as antioxidants and neuroprotectants since 2003.

Expected to speak at the hearing are Jenniafer Walters, president of the Epilepsy Association of Oklahoma; Josh Stanley, a medical cannabis activist; and Mark Rosenfield, a cannabis researcher.

Others who will be at the hearing include Martin Piel, a Perry resident whose granddaughter, Zoey Johnson, has a catastrophic and rare form of childhood epilepsy called Dravet syndrome; Derek Mann, a pancreatic cancer survivor who has listened to other cancer patients talk about the benefit they got from using cannabis; and Seth Stambaugh, an Enid medical technician who got the ball rolling for the upcoming hearing.

State Sen. Patrick Anderson, R-Enid, chair of the Appropriations Subcommittee on Select Agencies, scheduled a hearing. Anderson admits he was skeptical when Stambaugh first approached him.

“The first time I met Seth and he told me what he wanted to talk to me about, I told him I was opposed to medicalizing marijuana,” Anderson said. “But my opposition is based on moral beliefs instead of scientific research.”

Anderson said he’s willing to listen and see if his stance can be changed.

“I think it’s a subject we could learn more about,” Anderson said.

In a highly regulated atmosphere, medicalized cannabis has the potential to bring economic growth to the state and be a source of tax revenue, Anderson said. That’s far from his first reaction, though.

“My initial reaction was, ‘medical marijuana — we’re not going to support it,’” Anderson said.

Stambaugh said one of the reasons he felt compelled to step forward on behalf of medical cannabis is the Oklahoma families who have children with Dravet syndrome.

According to the National Institute of Neurological Disorders and Stroke, Dravet syndrome, also called severe myoclonic epilepsy of infancy, appears during the first year of life with frequent seizures. It can cause continuous seizures that require emergency medical care.

“Children with Dravet syndrome typically experience poor development of language and motor skills, hyperactivity and difficulty relating to others,” the NIHNDS web page reads.

Cannabidiol has been known to help epilepsy patients since 1949, but only recently has evidence shown how much it helps with other diseases, Stambaugh said.

Stambaugh said 21 states permit medical use, for treating epilepsy, pain, cancer, severe nausea, wasting syndrome, muscle spasm, glaucoma and HIV/AIDS.

Mark Woodward, Oklahoma Bureau of Narcotics and Dangerous Drugs Control spokesman, said our state experienced a boost in marijuana activity after Colorado’s 2
010 l

Article from the Enid News and Eagle


of medical marijuana, according to The Associated Press.
The Enid News and Eagle, Enid, OK
January 18, 2014
A medical look at marijuana

By Phyllis Zorn, Staff Writer

Jenniafer Walters, president of the Epilepsy Association of Oklahoma, hopes to see Oklahoma legislators open the door for use of medical cannabis.
Her interest is both professional and personal. Her daughter, Nichole Walters, 22, has epilepsy. Nichole Walters was 11 months old when she had her first seizure, and three times her seizures have been severe enough she had to be put on life support.
Nichole’s physicians have implanted vagus nerve stimulators three times over the years. A device about the size of a pocket watch, it is implanted into the chest, much like a pacemaker, and wired to the brain. Although constantly interacting with Nichole’s brain, the VNS also performs a rescue by sending an electronic impulse to the brain to disrupt severe seizures. If the seizure persists long enough, someone must swipe a magnet over the VNS to fire the pulse.
“She was in fifth grade when she had to have the first one implanted,” Jenniafer Walters said.
Although the VNS has helped her daughter, Jenniafer Walters gives its use a mixed review.
“It’s not the amount of seizures she has, it’s that when she goes into a grand mal seizure, she does not come out of it,” Jenniafer Walters said.
She points out that seizures can be life threatening, and that the longer the seizure lasts, the more damaging it can be to the brain and body.
Mainstream drugs used to control seizures can have severe side effects, Jenniafer Walters said.
Children who have seizures face difficulty in school because of the learning challenges caused by the seizures. Additionally, medications used to ward off seizures themselves can cause learning disabilities, she said.
She hopes Oklahoma legislators will approve medical cannabis — not just for her daughter’s sake, but for other children.
“If we can have something that is a natural product that does not have bad side effects, it would be better,” Jenniafer Walters said.
Nhora and Dana Magill’s son, Nikko, 5, has Dravet syndrome. It is a catastrophic form of childhood epilepsy. The family has tried first one treatment, then another, for Nikko’s entire life. They’ve even had him on the ketogenic diet, a high-fat, low-carbohydrate diet used as a treatment of last resort for severe epilepsy.
As recently as November, Nikko was hospitalized on life support after a virus led to a downward spiral of worsening symptoms. His health always is precarious, and an everyday virus can trigger unexpected and devastating problems.
“They had to put him on paralyzing medicine,” Dana Magill said. “He was basically in a medically induced coma for three weeks. He’s already on a lot of seizure medicine.”
When the paralyzing medicine was taken away, things still were not good. Nikko had become addicted to it, Dana Magill said.
“I saw him go through withdrawals, they have him on methadone,” Nhora Magill said. “I see him shaking, trembling, sweating. It’s just so bad, I cry.”
The Magills also are interested in seeing cannabidiol approved for use in Oklahoma.
“One of my best friends has already moved to Colorado for this treatment,” Nhora Magill said.
The medicine is an oil tincture placed under the tongue of the child.
“It’s in our minds, too,” Nhora Magill said.
With Dana Magill owning an El Reno children’s furniture store, it would not be easy for the family to take Nikko to Colorado for the treatment. Splitting into two households in different states is not an appealing option, with Nikko needing both his parents and the parents needing the support of one another. Nevertheless, Nikko’s needs must come first for the Magills.
“If we have to separate our family, we will,” Nhora Magill said.
“If we could get the medical cannabis approved, if we can just hold his seizures to the same level, it would let us get him off the drugs with their side effects,” Dana Magill said.
Katie Dodson, 9, is another Oklahoma child with Dravet syndrome. “Katie was 6 months old when she had her first seizure,” said her mother, Kelly Dodson.
Katie has been on 17 epilepsy medications during her life, as many as five at one time. One medication, Stiripentol, is an “orphan drug” that has to be imported from France at a cost of $1,200 per month. The family’s insurance covers half.
Currently, Katie takes five prescriptions in as many as three doses per day, and deals with devastating side effects, Kelly Dodson said.
“We have to sign paperwork at the pharmacy that we know she is on adult levels of this medicine and that she could die at any time from liver and kidney failure,” Kelly Dodson said. “They are slowly destroying her organs.”
Katie’s physicians have even tried brain surgery, in which a piece of her brain the size of an orange was removed.
“There’s no other medications in this world that’s left for us to try,” Kelly Dodson said. “She’s extremely lethargic throughout the day and she suffers insomnia every night. She’s experienced weight gain. The most devastating is now she has a slack affect — she just doesn’t get really excited about things or overly happy.”
Dravet syndrome, and the treatments Katie has undergone because of it, have slowed the fourth-grader’s progress in school to the point she is developmentally disabled and an aide must be with her all the time.
“These children need to have access to this medication to try to save their lives,” Kelly Dodson said. “We don’t need marijuana that has to be smoked, we just need access to a prescription.”
Virginia Spencer, a mother of five and wife of an Air Force staff sergeant stationed at Tinker Air Force base, plans to move to Colorado Springs with her 9-year-old daughter, Avagrace, and perhaps a younger child as well.
That’s where friends get the cannabidiol treatment that is helping their child.
Avagrace has Dravet syndrome and began having seizures while still in utero. The first visible seizure happened so soon after birth that Avagrace still was in the hospital nursery. Physicians have tried 21 different drugs to control her seizures, sometimes in regimens of five prescriptions at a time and sometimes one solo.
“We need to move as soon as possible,” Virginia Spencer said. “Avagrace’s heart has stopped five times in the past year, which is not good at all. We are at this point in hospice, with a pacemaker for her heart, a gastrostomy tube and Medi-port, and other things that will make it easier for doctors to take care of her.”
The move will mean Virginia Spencer’s husband, Brendan Spencer, will not be able to be in the same house with Virginia and Avagrace because cannabidiol’s status as “illegal under federal law” could trigger Brendan Spencer’s arrest by military officials. Brendan Spencer cannot administer the medication to his daughter nor even be in the vicinity of it.
“Even though it’s legal in Colorado, he cannot administer the medicine because it’s illegal under federal law,” Virginia Spencer said. “Brendan will be very limited in his access to his wife and daughter because of this medicine. It’s either that or sit here at hospice and wait for her to die.”
The couple’s other children are Aidan, 11, Violet, 7, Breya, 6, and Liam, 5. Avagrace is 9, but her developmental age is 5 or 6, Virginia said.
“She’s regressing developmentally,” Virginia Spencer said. “She’s slowly losing language capabilities.”
Virginia Spencer said Avagrace at times has experienced more than 100 seizures a day. In November, Avagrace had 347 seizures over the span of two days. Sometimes her seizures last 10 to 15 minutes, then are followed by another seizure after as little as 15 minutes of rest.
Her most recent EEG showed that Avagrace’s brain has slowed down. That’s why her organs are slowing, Virginia Spencer said. Her heart is healthy but cannot handle the seizures. Avagrace now is progressing to other types of seizures as well.
“There are good days when she has a seizure, and can get up and get going right after the seizures, and then there are days when her heart has stopped,” Virginia Spencer said.
Virginia Spencer is raising money for the move to Colorado via a Facebook page, “Help Avacake make Epilepsy Crumble.”
Available treatment options for childhood seizure disorders simply are not adequate in Oklahoma, Jenniafer Walters said.
“A lot of times with doctors, if the medicine doesn’t work they want to cut,” Jenniafer Walters said. “When you go in and cut out a portion of the brain, you can’t put that back. And when you take away a portion of the brain, it affects the senses, smell, touch, taste. A lot of them, 10 or 15 years later, are having seizures from the scar tissue that has formed.”
“I tell parents all the time to keep a journal,” Jenniafer Walters said. “Document everything. If the eyes go to the left corner, that means the seizure is coming from the right side of the brain.”
Sudden death in epilepsy is becoming more frequent now, though the medical community just now is starting to talk about it, she said.
Walters said she wishes cannabidiol had been around when her own daughter was growing up.
“We use plant-based drugs daily,” Jenniafer Walters said. “Cannabidiol is not something you smoke, it’s a pill or an oil.”
If it helps people with epilepsy, it might help people with other conditions, Jenniafer Walters said.
“Why not research it?” she said. “If we could give people something that might have less side effects, that’s important too.”

Article from the Enid News and Eagle


Medical Marijuana On Medical Marijuana and Epilepsy
Nearly 3 million people in the United States live with epilepsy, a neurological problem that includes recurring seizures. While 6 in 10 people with epilepsy may respond to medical treatment, over 1 million people live with uncontrolled seizures. Some of these people may be helped by surgery or other non-drug treatments, but for many, no answers have been found yet. People with uncontrolled epilepsy live with the continued risk of seizures, side effects of medication, injuries and other medical problems.

Click here to read more on this subject
Parents, lawmaker rally for medical marijuana at State Capitol
Could pot ever be legal in Oklahoma? It's a question one lawmaker has asked for nearly a decade.

Saturday dozens met at the State Capitol to get the ball rolling on possible medical marijuana legislation. Among them were parents Kelli and Jason Dodson.

"It's the worst thing that could possibly happening your life, to have a child who receives a diagnosis that is basically a death sentence," Kelli Dodson said, talking about her daughter Katie who has Dravet syndrome. Dravet is a rare form of epilepsy that could shorten her life. And her body's already rejected nearly 20 different medications. "They've all had side effects of their own, some of them have increased her seizures," said Jason. That's why the Dodson's are calling for change. Asking Oklahoma lawmakers to allow CBD, or low dose marijuana used for medical purposes.

"It's an uphill battle but it's one that we have to begin," said state Senator Connie Johnson (D - Oklahoma City). Oklahoma has some of the toughest marihuana laws in the country. And the Dodson's believe loosening of those laws could help Katie. "It's helping a lot of kids like her with the same conditions, and we would definitely want the chance to try it to find out for sure," Jason said.

Currently, 20 states allow marijuana for medical use. And according to a recent survey by Sooner poll, more than 70 percent of Oklahomans are for it. But Johnson has re-introduced the idea for 8 years, and has gotten nowhere.
"Policy-makers are behind the people when it comes to understanding the value of treatments from medical marijuana," she said. Most people who attended the session at the Capitol Saturday back the idea.

"Of course Oklahoma should be the very next state to do this and it should be done tomorrow," Ryan Underwood said. For now, the fight to change the state's pot laws is not an optimistic one. "Pretty much 1 percent, 0 percent of the policy makers in Oklahoma are willing to embrace this reality," said Johnson. A realization that's creating a dilemma for the Dodsons who are worried about their daughter, but want to keep her life as normal as possible.

"We're proud Oklahomans," Kelli said, "we come from generations of Oklahomans. We shouldn't have to move to Colorado to get a treatment that has already been legalized there." In Oklahoma, anyone found with pot could face up to a year in jail for their first offense and between two and 10 years for their second.

Orginal story link from FOX 25 - Oklahoma City, Oklahoma

Marijuana relieves 6-year-old of epileptic seizures
DENVER — She’s six years old, and she uses marijuana every day.

Charlotte Figi suffers from a rare form of epilepsy called Dravet Syndrome. She’s endured violent seizures since she was a newborn. Most weeks, she’d have about 300 seizures a week.

After countless emergency room visits, trips to specialists and children’s hospitals, and more than a dozen pharmaceuticals, nothing worked.

Then, a year-and-a-half ago, as a last resort, her mom tried cannabis oil. The medical marijuana worked immediately.

“It’s potent, it’s strong, it’s spicy, it’s got some kick,” her mother, Paige Figi, told FOX31 Denver as she showed us a syringe full of the cannabis oil.

It’s diluted with olive oil, and mixed with the food Charlotte eats. She takes the medicine twice a day.

The results have been astounding. Charlotte, who’d been unable to walk, or talk, or eat – is now dancing and playing. And she’s down to just two or three seizures a week.

Charlotte’s story will get national attention this weekend as part of a CNN documentary called ‘Weed.’ It’s sparking a coast-to-coast debate about whether pot is harmful or helpful.

For Josh Stanley, there’s no debate.

“When we met Charlotte, she was a catatonic child. She couldn’t get out of her wheelchair. She couldn’t swallow. And now she’s off all of her pharmaceuticals,” Stanley told FOX31 Denver.

Stanley’s company custom-developed the strain of cannabis used to treat Charlotte. It’s now being used to treat dozens of other kids suffering from epilepsy, too.

They call the strain “Charlotte’s Web.”

Stanley and his siblings also set up a nonprofit called Realm of Caring, to help pay for other desperate families to move to Colorado, where their epileptic kids can legally be treated.

At six, Charlotte may seem young but she’s hardly the youngest being treated with medicinal marijuana. There are about 40 kids in Colorado with medical marijuana cards. The youngest, less than a year old.

All of them benefitting – their families would tell you – from a once-unthinkable remedy.

“Just living a normal life. It’s 100 percent different,” Paige Figi said.

There are questions about the long-term effects of marijuana use in young people, but most every study up until now has involved marijuana smokers – and Charlotte doesn’t smoke the marijuana.

And by the way, the cannabis oil doesn’t make her high. It’s from a strain that’s very low in Tetrahydrocannabinol, or THC – which is the mind-altering ingredient in marijuana.

“Charlotte’s Web”