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Medical marijuana refugees: 'This was our only hope'
CNN ^ | 03/11/3014

Posted on 03/11/2014 3:34:46 AM PDT by Wolfie

Medical marijuana refugees: 'This was our only hope'

They've come from as far away as Australia and Canada, or as close as Oklahoma.

They are of different backgrounds and ages, but they've all moved to Colorado for the same thing: medical marijuana to treat their sick children.

"Jordan had her first seizure at 6 months old. I had never seen a seizure before," says her mother, Paula Lyles. "We took her to the hospital. The doctors said that would probably be the only one she'd have and sent us home."

But when Jordan was 18 months old, the seizures began in earnest.

(Snip)

Doing so allowed Jordan to be treated with a strain of medical marijuana that's high in cannabidiol, or CBD, a chemical in cannabis thought to have medicinal properties, and low in tetrahydrocannabinol, or THC, the psychoactive chemical in pot that gets users high.

Over the last eight months, more than 100 families have moved to Colorado looking for medicine to save their children's lives, according to the Realm of Caring. The organization is run by the Stanley family -- medical marijuana growers and dispensary owners who pioneered a strain of cannabis high in CBD and low in THC.

The strain is called Charlotte's Web. It's named after 7-year-old Charlotte Figi of Colorado Springs. Charlotte also has Dravet syndrome; after being on seven medications with no success, she began taking marijuana in an oil form. Her seizures were drastically reduced -- from 300 a week to two or three a month.

(Excerpt) Read more at cnn.com ...


TOPICS: Culture/Society
KEYWORDS: wod

1 posted on 03/11/2014 3:34:46 AM PDT by Wolfie
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To: Wolfie

Are there any medical studies to back up these claims?

Are there clinical trials of purified and quantitated cannabidiol underway?

If this truly helps to stop the children’s seizures, it should be possible to make a purified, standardized drug for patient use, free of all the carcinogens and mind-altering substances in marijuana. Despite the claims of marijuana advocates, marijuana is NOT safe.


2 posted on 03/11/2014 4:06:26 AM PDT by exDemMom (Current visual of the hole the US continues to dig itself into: http://www.usdebtclock.org/)
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To: exDemMom

My understanding is that due to the federal ban, there is no possibility for private research. It all must be done in govt studies, the same govt that has banned it.

If safety were really the test for legality, we’d not have many medications on the market.


3 posted on 03/11/2014 4:29:15 AM PDT by dmz
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To: exDemMom

You are making the assumption that the therapeutic substances are distinct from the mind-altering. I don’t see how you can do that.


4 posted on 03/11/2014 4:30:02 AM PDT by MetaThought
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To: Wolfie

whatever works when it comes to being able to survive this vicious planet. If it helps these people, legalize it.


5 posted on 03/11/2014 4:33:38 AM PDT by yldstrk ( My heroes have always been cowboys)
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To: exDemMom

You have to balance the risk with the benefit. If overall it helps, don’t restrict access to save people from some pie in the sky threat.


6 posted on 03/11/2014 4:35:08 AM PDT by yldstrk ( My heroes have always been cowboys)
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To: MetaThought

the article says that specifically, high levels of cannabinol; low levels of THC


7 posted on 03/11/2014 4:43:37 AM PDT by babble-on
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To: babble-on

That’s because a normal dose of THC would wipe them out. The question is whether it really works or is it just a perception thing.


8 posted on 03/11/2014 4:52:11 AM PDT by AppyPappy
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To: exDemMom

Not in the U.S., because it’s illegal. Israel has been pioneering medical cannabis studies for decades. That is where the most research is being done. U.S. governmental agencies will not allow studies that aren’t trying to show the harm of cannabis.


9 posted on 03/11/2014 4:54:39 AM PDT by Wolfie
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To: AppyPappy

Charlotte’s story:

http://www.youtube.com/watch?v=BH5yzEu3JGQ


10 posted on 03/11/2014 4:58:21 AM PDT by Wolfie
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To: AppyPappy

“That’s because a normal dose of THC would wipe them out. The question is whether it really works or is it just a perception thing.”

Who cares? Either way it helps or is perceived to help


11 posted on 03/11/2014 5:01:50 AM PDT by yldstrk ( My heroes have always been cowboys)
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To: AppyPappy

well, if a placebo reduces the seizures by that much, it’s an excellent placebo


12 posted on 03/11/2014 5:08:03 AM PDT by babble-on
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To: babble-on

Or it could prove the seizures weren’t real or that something else is affecting them. The use of the herb could be coincidental or it could lead to something worse.
The DMSO Effect


13 posted on 03/11/2014 5:22:46 AM PDT by AppyPappy
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To: AppyPappy

You’ll grasp at anything, won’t you?


14 posted on 03/11/2014 5:26:37 AM PDT by Wolfie
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To: Wolfie

Saw the my first deduction for pot on a tax return yesterday. Guy spent 4500 for weed in three mos.

Also coming across more gay marriage filing status.


15 posted on 03/11/2014 5:40:52 AM PDT by School of Rational Thought
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To: exDemMom
When your child is having 2 seizures per hour & doctors can't help, then you don't much care whether there have been medical studies on marijuana, nor do you care whether it is purified & government approved, if it stops the seizures.

If you were having 2 seizures per hour, would you rather be stoned or flopping uncontrollably on the floor/bed? If powerful opiates OR marijuana were needed to control your seizures, which would you use?

Seizures can kill you, marijuana cannot. Government approved drugs regularly kill & injure people. These drugs come with a list of possible adverse reactions & side effects. Lawyers are making a mint on government approved drugs that harm people. There has never been a recorded death or permanent injury from marijuana. The amount estimated to cause death is so large as to be impossible to ingest. A quart of government approved alcohol will kill most people.

There is NOTHING safe on this planet. If you drink too much WATER you will die. Same for everything else. If you wait for the government to tell you what is safe you may die, or live a life of pain & misery, waiting.

This is the same government that says CO2 is a pollutant, government spending will turn the economy around, & a dry ditch is a wetlands.

God bless these parents for ignoring the corrupt nanny state & perhaps saving their children's lives. See Genesis 1:29.

16 posted on 03/11/2014 5:42:17 AM PDT by Mister Da (The mark of a wise man is not what he knows, but what he knows he doesn't know!)
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To: School of Rational Thought

Good. Starve the beast. People pay too much in taxes.


17 posted on 03/11/2014 5:45:37 AM PDT by Wolfie
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To: scripter

ping...


18 posted on 03/11/2014 6:38:07 AM PDT by latina4dubya (when i have money i buy books... if i have anything left, i buy 6-inch heels and a bottle of wine...)
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To: Mister Da
Good reply. I say, anything that reduces my pain is good. I use the herb rather than getting shithoused. Works for me.

FMCDH(BITS)

19 posted on 03/11/2014 7:51:18 AM PDT by nothingnew (I fear for my Republic due to marxist influence in our government. Open eyes/see)
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To: AppyPappy

“Or it could prove the seizures weren’t real”

Seriously?


20 posted on 03/11/2014 7:54:21 AM PDT by Fuzz
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To: Wolfie

Utter BS.

Always is with “medical marijuana”.

It’s such a scam.


21 posted on 03/11/2014 8:53:02 AM PDT by ifinnegan
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To: ifinnegan

SO you think the kids are faking the seizures? Unreal.


22 posted on 03/11/2014 9:25:04 AM PDT by Wolfie
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Comment #23 Removed by Moderator

To: dmz
My understanding is that due to the federal ban, there is no possibility for private research. It all must be done in govt studies, the same govt that has banned it.

If safety were really the test for legality, we’d not have many medications on the market.

Most researchers get government grants for research but do not work for the government. Most private research is done by the pharmaceutical companies, which only conduct research that they judge most likely to yield a profit later on. Academic and government researchers can do just about any research they want, if they can get the permits and convince other researchers that their grant proposals have scientific merit.

In the area of drug safety, the risks of the drug are weighed against the benefits in order to make a determination of whether the drug should be approved or not. Committees of scientific experts and patient representatives review the drug approval application and clinical trial results before they make recommendations to the FDA on whether it should be approved. If they do not think that the benefits of the drug outweigh its risks, they will not recommend approval.

24 posted on 03/11/2014 6:47:03 PM PDT by exDemMom (Current visual of the hole the US continues to dig itself into: http://www.usdebtclock.org/)
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To: MetaThought

The article said that the active ingredient in decreasing the seizures is cannabidiol, which is not the psychoactive substance, tetrahydrocannabinol, that people use to get high.

I have not reviewed the medical literature to verify that cannabidiol is not (or is minimally) psychoactive.


25 posted on 03/11/2014 6:49:28 PM PDT by exDemMom (Current visual of the hole the US continues to dig itself into: http://www.usdebtclock.org/)
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To: yldstrk
You have to balance the risk with the benefit. If overall it helps, don’t restrict access to save people from some pie in the sky threat.

The dangers of marijuana are quite real. Marijuana contains carcinogens more potent than those found in tobacco. Marijuana has been shown to precipitate psychotic disorders in immature brains. Marijuana decreases initiative. Marijuana use has been connected to certain mental abnormalities in offspring, even offspring who were born years after the last use of marijuana. These are not "pie in the sky threats"--they are real dangers of marijuana use. I am not convinced that the seizure repressing activity of marijuana--if it exists, which has not been scientifically established--is better than that of current approved seizure medications. I sense here a situation where rumors claim all kinds of miraculous properties of some drug, but no tests have ever been done and there is no clear evidence of miracles. This usually happens in the realm of cancer "cures."

26 posted on 03/11/2014 6:57:27 PM PDT by exDemMom (Current visual of the hole the US continues to dig itself into: http://www.usdebtclock.org/)
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To: Mister Da
When your child is having 2 seizures per hour & doctors can't help, then you don't much care whether there have been medical studies on marijuana, nor do you care whether it is purified & government approved, if it stops the seizures.

There are a lot of people making claims about so-called miracle cures, without evidence to back up the claims. I would not give something to my child based on hear-say.

Marijuana is a complex mixture, known to contain carcinogens and other physiologically damaging chemicals. *If* there is a true anti-seizure activity of cannibidiol, then purifying it will remove the carcinogens, psychoactive substances, brain-damaging chemicals, etc. Purifying it also allows for precise dosing, which is necessary to control the symptoms without overdosing, which can cause all kinds of toxic effects.

If you were having 2 seizures per hour, would you rather be stoned or flopping uncontrollably on the floor/bed? If powerful opiates OR marijuana were needed to control your seizures, which would you use?

If I were having seizures, I would take the drug that has been extensively tested in thousands of people for safety and efficacy, not some street drug whose main "proof" of an effect is the sheer number of old wives' tales told about it.

These drugs come with a list of possible adverse reactions & side effects.

The lists of possible adverse reactions and side effects are just about identical for all drugs. What those lists don't tell you is how many people actually have side effects--which is pretty low.

There has never been a recorded death or permanent injury from marijuana.

Marijuana contains high levels of carcinogens, more than tobacco does. It can precipitate psychotic disorder in developing brains (meaning in the brain of anyone under the age of 25). It causes users to lose their initiative, perhaps permanently. It causes brain damage in children, years after the parent last used marijuana. It is not safe.

27 posted on 03/11/2014 7:17:33 PM PDT by exDemMom (Current visual of the hole the US continues to dig itself into: http://www.usdebtclock.org/)
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To: exDemMom

I agree with you on the risks, but if little Johnny is having seizures all the time, certain mental abnormalities pale in comparison


28 posted on 03/11/2014 7:37:18 PM PDT by yldstrk ( My heroes have always been cowboys)
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Comment #29 Removed by Moderator

To: yldstrk
If my child were having seizures, I would prefer to not give him an untested chemical mixture with known adverse effects. There are 57 anti-seizure drugs listed over at www.epilepsy.com, which I would rather try. It is very likely that one or a combination of them would control the disorder, and I know that they have a tested safety profile. There are also various medical treatments for some kinds of epilepsy--perhaps my child could benefit from one of them.

I did a search for cannabidiol over at www.pubmed.org. There wasn't much. The first entry was this Cochrane review: Cannabinoids for epilepsy. Basically, it tells me that the studies to date are safety studies, which are not designed to test efficacy. Although some safety studies can give limited data on efficacy, none of the studies reviewed did that. These studies only showed that in the 48 patients studied, cannabidiol did not have short-term safety issues. That means that long-term safety has not been established. The usefulness of cannabidiol as an epilepsy treatment is still a matter of hear-say.

30 posted on 03/12/2014 3:20:36 AM PDT by exDemMom (Current visual of the hole the US continues to dig itself into: http://www.usdebtclock.org/)
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To: exDemMom

well exDem, I see your point. Presumably though, these folks haven’t had good success with traditional meds.


31 posted on 03/12/2014 5:03:44 AM PDT by yldstrk ( My heroes have always been cowboys)
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To: exDemMom

Would you have the federal government step in and put a stop to this treatment for this child?


32 posted on 03/12/2014 5:10:03 AM PDT by Ken H (What happens on the internet, stays on the internet.)
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To: nothingnew

There was an attempt to put it in a pill that was called Marinol. That had mixed success. Smoking at least had the virtue of being able to titrate. Modern spray mists could do
something similar but I don’t know if that was ever marketed.


33 posted on 03/12/2014 5:16:41 AM PDT by HiTech RedNeck (Embrace the Lion of Judah and He will roar for you and teach you to roar too. See my page.)
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To: exDemMom

Watch Sanjay Gupta’s medical marijuana docs “Weed” and “Weed 2”. Quite enlightening. These folks have tried everything in the traditional realm for their childrens’ seizures. Seizures that last hours and occur several times a day. The recommended drugs do not work. They turn to high-CBD/low-THC cannabis preparations as a last resort. It’s all well-documented. Other countries are pioneering this work (mainly the UK and Israel). The U.S. government isn’t interested (although they have just approved the first clinical trials of GW Pharmaceutical’s “Sativex” spray from the UK, already approved abroad).


34 posted on 03/12/2014 5:30:08 AM PDT by Wolfie
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To: HiTech RedNeck

To be clear, these kids are smoking weed. They are ingesting small amounts sublingually in oil form. Again, watch the Guptay docs. These high CBD/low THC preparations (the kind that don’t get you high) work miracles. Anybody who would get in the way of this is heartless.


35 posted on 03/12/2014 5:34:36 AM PDT by Wolfie
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To: Wolfie

Oops. to be even clearer, these kids are NOT smoking weed.


36 posted on 03/12/2014 5:37:40 AM PDT by Wolfie
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To: Wolfie

Tincture of MJ used to be in the USP. It probably ought to come back and this oil stuff too. The great fear keeping it is that some people will just use it to get high. And so they might. That’s not a problem that can be fixed with human laws if the morality isn’t there. And a morality that believes in respecting one’s body is, paradoxically, one that cares about the ill. I champion Christian faith because it isn’t made up. It’s an actual revelation of God. God would have no problem giving tincture of pot to someone who could benefit. He’d have a big problem with us saying nothing about people who don’t need it, using it to get high. Because that disses Him.


37 posted on 03/12/2014 11:08:29 AM PDT by HiTech RedNeck (Embrace the Lion of Judah and He will roar for you and teach you to roar too. See my page.)
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To: Wolfie

I take it that’s what you meant. I have tended to get jaded about this stuff at a secular level because what’s new under the sun? But the One who comes from above the sun, we will profit to listen to.


38 posted on 03/12/2014 11:10:12 AM PDT by HiTech RedNeck (Embrace the Lion of Judah and He will roar for you and teach you to roar too. See my page.)
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To: yldstrk
well exDem, I see your point. Presumably though, these folks haven’t had good success with traditional meds.

I fully understand the frustration and desperation that parents can feel when dealing with a child whose illness is not adequately treated by today's medicines, or whose illness requires the use of several drugs, in which case it can take months or years to determine the optimal dosages.

I also understand that people in this situation become especially receptive to the old wives' tales about such-and-such miracle cure that isn't available because (insert your favorite anti-pharmaceutical or FDA conspiracy here), and that there are many gold-diggers waiting to take advantage of people like that.

Logically, there is no reason to think that something that is untested could somehow be better than the drugs that have been extensively tested. It hasn't been tested--how can anyone possibly know it would have any effect on the condition they want treated?

39 posted on 03/12/2014 4:39:30 PM PDT by exDemMom (Current visual of the hole the US continues to dig itself into: http://www.usdebtclock.org/)
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To: HiTech RedNeck
There was an attempt to put it in a pill that was called Marinol.

Back when I had to do pharmacy inventories, Marinol was one of the drugs I would inventory. It came in round pills, sort of like vitamin E capsules, but spherical.

40 posted on 03/12/2014 4:42:43 PM PDT by exDemMom (Current visual of the hole the US continues to dig itself into: http://www.usdebtclock.org/)
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To: exDemMom

Asking again, would you have the federal government step in and put a stop to this treatment for this child?


41 posted on 03/12/2014 6:12:38 PM PDT by Ken H (What happens on the internet, stays on the internet.)
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To: exDemMom; Wolfie
From the NJ Star-Ledger, May 2013 =>

__________________________________________________________________

Relief elusive for N.J.'s youngest medical marijuana patient

-snip-

[2 year old Vivian Wilson] is diagnosed with a rare and severe form of epilepsy known as Dravet syndrome.

Vivian’s neurologist, a national expert in pediatric epilepsy, thinks it’s worth investigating.

Orrin Devinsky, director of the New York University and Saint Barnabas Epilepsy Center, said he believes cannabis can play a role in helping children with epilepsy.

http://www.nj.com/politics/index.ssf/2013/05/relief_elusive_for_njs_younges.html

___________________________________________________________________

Thoughts?

42 posted on 03/12/2014 10:30:41 PM PDT by Ken H (What happens on the internet, stays on the internet.)
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To: Ken H
Vivian is one of the subjects of Gupta's "Weed 2" documentary. NJ has medical marijuana, but nobody specializes in the high CBD/low THC blend that works best for epilepsy.

The family spent a month in Colorado testing the oil from the Realm Of Caring growers (who specifically breed this type of plant for the manufacture of the oil, dubbed "Charlotte's Web" after their first patient). It worked very well and reduced her number of seizures to an average of one per week. They could not bring it back to NJ with them for legal reasons, and Vivian went back to her average 100 seizures a week when they returned to NJ. After trying unsuccessfully to obtain similar medicines from the NJ dispensaries, they moved to Colorado permanently.

43 posted on 03/13/2014 11:04:15 AM PDT by Wolfie
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To: Ken H

I honestly think that the situation with “medical” marijuana is very similar to the situation with laetrile a few years ago. Laetrile was supposed to be a miracle cancer cure; people who were desperate went to all kinds of lengths to get it. It is poisonous, however, and has killed people, but does nothing to stop the cancer.

If there is any therapeutic benefit to the use of cannabidiol in the treatment of this specific form of epilepsy, then carefully designed clinical trials will reveal that benefit.

I am very aware that many conditions cannot be controlled adequately, and that people are desperate for any straw of hope. That desperation simply cannot make a miracle cure spring into existence. As hard as it is, people need to step back and think critically. Is there objective evidence supporting the use of this substance for this condition? Is there objective evidence that this substance is safe? And so on.

I consider administering untested substances of unknown properties to sick children as a form of medical experimentation, conducted in such a way that would never be approved by an ethics review board.

Dravet’s syndrome in most cases is caused by a genetic defect that causes affected children to have half the number of a certain neural receptor as normal children. As a medical researcher, that tells me that gene therapy may be a way to treat this condition, by replacing the missing receptors.


44 posted on 03/13/2014 9:33:27 PM PDT by exDemMom (Current visual of the hole the US continues to dig itself into: http://www.usdebtclock.org/)
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