Mother to move to Colo. in hopes that medical marijuana will help ill son

Ana Watson said she has tried everything for her young son Preston, who has epilepsy.

The particular form he has is called “Dravet Syndrome,” caused by a genetic anomaly that was largely unknown when Preston first exhibited its symptoms.

There is little treatment for it and what there is has proven to be ineffective. It started shortly after Preston was born.

“We noticed his legs would tremor and they just thought it was muscles that hadn’t developed and then, at three months when he had his first grand mal seizure, then we knew,” Watson said.

He has literally hundreds of seizures a day. Some are small and others aren’t.

“You think, ‘Is this the seizure when I’m going to have to call 911?’,” Watson said. “And, then you’re last thoughts are, ‘Is this the seizure he’s not going to come out of?'”

Dr. Bob Greenwood, of UNC Children’s Hospital, is Preston’s neurologist.

Dr. Greenwood, too, feels the frustration of dealing with a condition that appears to be stronger than any medicine.

“He has, literally, been treated with every anti-convulsive that we have,” Greenwood said. “And we truly have not found anything that would control his seizures.”

Paige Figi’s daughter, Charlotte, had a similarly debilitating form of epilepsy, just a couple of years ago. But today, she dances like a healthy little girl, because of an experimental treatment made from marijuana.

It’s a cannabis oil that is spread on her food that has shown real promise with a number of children. Enough promise that Watson is moving to Colorado, where it is available.

“If you’re constantly seizing, your brain cannot develop,” Watson said.

Watson is ready to move to a place she has never lived, away from friends and family, for a chance at something that not everyone approves of.

“We can’t wait a year or five years for it to become legal in North Carolina,” Watson said. “We’ve got to go, now.”

She said she knows medical marijuana is not a miracle drug and there are cases where it’s not going to work.

“But how could you pass up the possibility to give your children life?” she said. 

Almost all of the THC — the main ingredient doctors worry about in this kind of treatment — has been removed from the oil.

Dr. Greenwood says there are studies on it that just got underway, to see if it is truly safe and effective.

North Carolina has a bill in the state house — sponsored by Greensboro’s Pricey Harrison, among others — to investigate whether legalizing cannabis for medical use would be a good idea. Although that bill is still alive, it appears to be locked up, in committee.

8 comments

  • Storm Crow

    2001 – “Treatment with CBD in oily solution of drug-resistant paediatric epilepsies” (PubMed) from the abstract- “Conclusions: So far obtained results in our open study appear encouraging for various reasons: 1) no side effects of such a severity were observed as to require CBD discontinuation; 2) in most of the treated children an improvement of the crises was obtained equal to, or higher than, 25% in spite of the low CBD doses administered; 3) in all CBD- treated children a clear improvement of consciousness and spasticity (whenever present) was observed.”

    2013 – “Report of a parent survey of cannabidiol-enriched cannabis use in pediatric treatment-resistant epilepsy (Science Direct) from the abstract – “Sixteen (84%) of the 19 parents reported a reduction in their child’s seizure frequency while taking cannabidiol-enriched cannabis. Of these, two (11%) reported complete seizure freedom, eight (42%) reported a greater than 80% reduction in seizure frequency, and six (32%) reported a 25–60% seizure reduction. Other beneficial effects included increased alertness, better mood, and improved sleep.”

  • billy cates

    MMJ Healing Powers Require The Whole Plant
    Posted by CN Staff on March 26, 2014 at 08:08:26 PT
    By Martin A. Lee, AlterNet
    Source: AlterNet

    USA — Ever since marijuana was banned by the federal government in the 1930s, proponents of prohibition have insisted that cannabis must remain illegal to protect America’s children. “Protecting the children” continues to be the calculated cornerstone of anti-marijuana propaganda, the cynical centerpiece of the war on drugs.
    How ironic, then, that today thousands of families in the United States are desperately seeking cannabis remedies to protect their children from deadly diseases. The erstwhile “Assassin of Youth” has become the savior for kids with catastrophic seizure disorders and other life-threatening conditions.

    Drawn by the near-miraculous healing power of oil extracted from the marijuana plant, families have been flocking to Colorado and other cannabis-friendly states, where they hope to find a remedy that helps their children, some of whom suffer a hundred seizures a day.

    Parents are reporting a dramatic reduction in seizures — often 50 to 90 percent — when their children are given oral extracts rich in cannabidiol (CBD), a nonpsychoactive cannabis component; these extracts are low in THC, the compound that causes the high marijuana is famous for.

    For every family that has uprooted and moved to Colorado, many more have chosen to stay home and lobby local officials in an effort to change state law so they might access an essential medicine. Their poignant pleas are having an impact. Politicians from both parties have been rushing to approve bills that would legalize marijuana for therapeutic purposes in such unlikely places as Kentucky, Georgia, Tennessee, Nebraska, South Carolina, Oklahoma, and Utah.

    However, there’s a catch: The bills under consideration will only allow the use of CBD-rich oil extracts with hardly any THC. Apparently marijuana is still the evil weed to many lawmakers, but somehow certain parts of the plant are good — and now they’re claiming the good parts aren’t actually marijuana!

    According to this political pretzel logic, marijuana gets you high, but CBD-rich marijuana doesn’t get you high; therefore, CBD-rich marijuana is not marijuana.

    “This is not medical marijuana. It’s just an oil derived from that plant,” according to Wisconsin GOP state representative John Spiros, a former police officer who voted to approve CBD-only legislation. Gage Froerer, a Utah state legislator, weighed in with similar rhetorical gimmickry about CBD: “It’s not a drug. It’s not medical marijuana.”

    Last week, Alabama became the first state to approve a CBD-only legislation.

    During the notorious vote that outlawed cannabis in America in 1937, a befuddled U.S. Congressman asked House Majority Leader Sam Rayburn from Texas, “What is this bill about?” Rayburn replied, “It has something to do with a thing called marijuana. I think it is a narcotic of some kind.” Still clueless more than seven decades later, influential state lawmakers are claiming that the CBD-only legislation they favor has something to do with a thing called “not marijuana.”

    Promoted by impassioned parents, do-gooders, and entrepreneurs with a financial interest in seeing such laws pass, CBD-only legislation has triggered a serious controversy within the medical marijuana community. Some see it as a key first step, a viable tactic for cracking open the prohibitionist door in states governed by retro pols and religious zealots.

    Others are less sanguine about the prospect of CBD-only laws. “CBD-only legalization is like being half pregnant. It doesn’t make sense,” says Garyn Angel, founder of Magical Butter, a homemaker’s device for extracting cannabis oil. Angel, who is not enamored of efforts to legalize only low THC concentrates, has provided financial assistance to poor families so they could join the CBD children’s crusade to Colorado.

    “We need many kinds of cannabis, not just the CBD-dominant strains,” says Arizona Dr. Suzanne Sisley, who recently testified before state lawmakers in Kentucky and Minnesota about medical marijuana’s potential for helping veterans struggling with post-traumatic stress disorder.

    Nearly four years earlier, Sisley had gotten FDA approval to investigate whether medical marijuana, including a CBD-rich strain, could be an effective treatment for PTSD. But her research was blocked by the National Institute of Drug Abuse (NIDA), which would not allow access to cannabis for therapeutic studies. Last week, NIDA finally relentedand approved Sisley’s PTSD study, but approval from the DEA is still required.

    Apparently no physicians in Minnesota or Kentucky were willing to speak on the record in favor of medicinal cannabis, so Dr. Sisley flew in from Arizona at the behest of the Marijuana Policy Project (MPP), which has lobbied for legalizing medical marijuana in several states.

    Two competing bills are being considered by Minnesota lawmakers — a broader, more inclusive initiative supported by the MPP and a CBD-only measure that would restrict patient access to non-smokable cannabis oil extracts with negligible amounts of THC. Both bills made it past the first House committee, but no less than nine other committees have to sign off on medical marijuana legislation before it reaches the Minnesota House floor for a full vote.

    Polls show huge support for medical marijuana in Minnesota (where selling cannabis to a teenager was once punishable by up to 40 years in prison). Many Minnesota residents are using marijuana, albeit illegally, to assuage chronic pain, stimulate appetite, quell seizures, and offset the awful side effects of chemotherapy. But elected officials in the North Star state seem more attuned to law enforcement opinion, which opposes medical marijuana in its natural, leafy form, than public opinion, which is overwhelmingly pro-choice with respect to cannabis therapeutics.

    Sisley could tell which way the wind was blowing as hitherto anti-marijuana politicians lined up to jump on board the CBD-only bandwagon.

    “I’m running into this blockade everywhere I go,” said Sisley. “CBD-oil bills are popping up in nearly every state that is examining medical marijuana legislation. And it’s making it much more difficult to pass comprehensive legislation that can address a wide range of conditions. I tried to explain to the legislators that a CBD-only law would benefit a narrow segment of the patient population. The vast majority of patients need access to a broader spectrum of whole plant marijuana remedies. Even pediatric patients need more options.”

    The case of Jayden David, a child stricken with Dravet’s Syndrome, is instructive. In 2011, five-year-old Jayden, who had been on 22 pills per day, was given a CBD-infused tincture, which his father obtained from the Harborside Health Center, a medical marijuana dispensary in Oakland. The CBD remedy worked wonders. For the next several months the boy with intractable epilepsy was largely seizure-free. Featured on national television, the story of Jayden’s transformation was the first broadcast that drew attention to the remarkable medicinal properties of cannabidiol.

    But the story doesn’t end there. In due course, it became evident to Jason David, Jayden’s devoted father, that sometimes his son responded better when more THC was added to the cannabis solution. If Jayden lived in a state with a CBD-only law rather than cutting edge California, he’d be out of luck, unable to legally access the medicine that keeps him alive. Many pediatric epilepsy patients would not be well served by CBD-only legislation. Nor would cancer patients, chronic pain suffers, and people with Alzheimer’s and autoimmune disorders.

    Scientific research has established that CBD and THC interact synergistically and potentiate each other’s therapeutic effects. And marijuana contains several hundred other compounds, including flavonoids, terpenes, and dozens of minor cannabinoids in addition to CBD and THC. Each of these compounds has particular healing attributes, but when combined they create what scientists refer to as an “entourage effect,” so that the therapeutic impact of the whole plant exceeds the sum of its parts. Therein lies the basic fallacy of the CBD-only position.

    When we launched Project CBD four years ago, I thought the serendipitous rediscovery of CBD-rich cannabis would be the nail in the coffin of marijuana prohibition. I didn’t anticipate that CBD-only laws would serve as a pretext to extend marijuana prohibition — under the guise, once again, of protecting the children.

    A version of this article was originally published on the Pediatric Cannabis Therapy website: drugsense.org/url/DSX6EJEG

    Newshawk: Afterburner
    Source: AlterNet (US)
    Author: Martin A. Lee, AlterNet
    Published: March 23, 2014
    Copyright: 2014 Independent Media Institute
    Contact: letters@alternet.org
    Website: http://www.alternet.org/
    URL: drugsense.org/url/ZBcLD0dY

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    cannabisnews.com/news/list/medical.shtml

    • Jayne Wallace-Bohannon

      I am a mother of a child with LGS or Lennox Gastaut Syndrome. This is a rare form of epilepsy. I have been studying and living with epilepsy for the past 25 years. The high success rates from the use of cannabis oil seem a little high to me. I have friends who are trying this treatment in California and they are not experiencing this reported rate of success. When you have parents of children who are suffering extreme difficulties, no measure to relieve that seems too great. What I am trying to say, is to research and do as much as possible to see if the cannabis oil can be used. But, don’t tout it as the cure all for epilepsy, there is not one. The disorder is much too complicated to wipe out in a single shot. I hope this works for her son, Dravets Syndrome is a very difficult disorder to manage.

    • JT

      You know, sinnerfrank, I disagree with about 99.5% of what you say on this site, but you know what? When a man is right, he’s right…

  • Trish Shroyer

    There will be a fundraiser Saturday, May 31st at Flip Flops Beach Bar and Grill in Greensboro from 5-11pm to raise money to assist Ana’s family with medical and moving expenses. Bands, Beer, Raffles, and more! Please spread the word and come out to support Preston if you can!

  • Jackie

    Our brain is not fully developed until the age of 26, the liver 15. There a lot of medications that they give kids that are harmful and have side effects, but because it’s legal, doctors will prescribe it. I recently had a friend that had to send her 7 year old son to detox because he was given so many different medicines for ADHD that he had a mental meltdown. We should all be concerned about what we put into our children’s bodies.

    I don’t know if cannabis is good or not for children, but severe seizures have to be worse on the brain than a trial run with it. Good luck and God be with you!

  • Frankie

    I am the mother of a 20 year old with dravet syndrome. She was not diagnosed until she was 14 years old. She is on 20 pills a day to control her seizures. We went through many years of not knowing what the next day would hold. There was no internet and little was know about this disorder. We felt so isolated and frustrated that we could not stop her daily seizures. The seizures have affected her mentally and physically. It is so disheartening to know that this treatment is out there and we cannot try it.

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