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March 30, 2015

FL Mom of epileptic son caught in Charlotte's Web medical marijuana bureaucracy: "None of the politicians care about us. They don't know how it is. They don't live it every day. Sleep next to my son and watch him seize. Then you tell me if you would do something illegally."

Just as 13-year-old Branden Petro flops into the passenger seat of his mom's car, his eyes roll back. His face twitches uncontrollably. He curls into a fetal position.
It is his third seizure on a particularly bad day. His mother, Renee Petro, 36, jumps from her seat and runs around the car. She pulls the backpack off her son and grabs his hand.
"Squeeze my hand if you can hear me," she pleads. "Squeeze my hand, Branden. Come on baby, squeeze my hand."
Every seizure terrifies her. Any seizure could cause more brain damage. Any one could be the first sign his condition is getting worse. Other children with his condition have taken a turn for the worse and been dead within a year.
She has heard medical marijuana helps children with seizures. The Florida Legislature passed a bill last year, which the governor signed, legalizing Charlotte's Web, a form of medical marijuana that does not produce a "high." But its use is still tied up in political fights and legal bureaucracy. Other forms of medical marijuana remain off-limits.
She knows many people think marijuana should remain illegal. She recognizes law-enforcement fears that legalization could make marijuana easier for recreational users and addicts. She's heard how pill-mill doctors would line up to dispense pot. She respects that it is illegal in Florida, and she does not want to break the law.
But being a good mother means far more to her than being a good citizen.
"I have said it a thousand times. I will not bury my son. But I should not, not for a split second, have to think about doing something illegal to be a good mother. We live in the United States of America," she said.
During summer vacation in 2011, Branden had what seemed like a routine fever. A few days later, he had a seizure and ended up in the emergency room. He fell into a coma. The seizures have not stopped since.
Eventually, he was diagnosed with febrile infection-related epilepsy syndrome. The condition is a medical mystery and it is treated with high-dose drugs, including antipsychotics.
A balancing act began. The drugs helped control seizures, but if he took too many, he became extremely lethargic. If he took too few, or the wrong mix, the seizures were not controlled
For his parents — dad is an active duty, deployed Army colonel, Renee occasionally works part time — the drugs have become as dangerous as the seizures they try to control.
"It isn't the disease that is taking Branden away from me. It's the medications that are taking him," Renee said. "And how many times have we had to watch him be suicidal or the times he saw things that aren't there?"
Renee heard about children with epilepsy who did better with medical marijuana than they did on pharmaceuticals. So, last October they flew to California, where medical marijuana is legal. Brandon began treatment under a doctor's supervision and they began to wean him from his other drugs. Renee said he went seizure-free for the three-week trial. She said his mood seemed to improve.
"Stories of epileptic children responding to medical marijuana are legitimate," said Dr. Selim Benbadis, director of the Comprehensive Epilepsy Program at University of South Florida and Tampa General Hospital. "If it was available, I would prescribe it next week."
But Benbadis is cautious. "There is very strong anecdotal evidence, but we need clinical trials. There are also people who do not respond, but you don't hear about any of them in news stories."
"Do I think it's going to be miraculous?" Renee said. "No. Nothing is perfect. To be honest with you I don't want perfect. Perfect is overrated. All I want is for him to have a chance to live a life, be happy. Maybe fall in love."

24 comments:

  1. Rafael EspericuetaMarch 30, 2015 at 9:21 PM

    The trouble is that marijuana is completely non-toxic, yet is effective. Big pharma can't compete with that, as their drugs are highly toxic and mostly ineffective. There is very little in this world less toxic than marijuana. Every over the counter medication is far more toxic, and the prescription ones are of course far worse. But the main reason for the laws against marijuana are ignorance (engineered ignorance). And traditionally Americans value their ignorance more than they value the welfare of a child.

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  2. Here is an example of the thinking. After a vaccine kills an infant, you DELIBERATELY AND KNOWINGLY frame the parents for murder shaking baby syndrome and imprison them for killing the baby. If the STORY gets out, the peasants will FEAR VACCINES. The new move to make conspiracy theories illegal. The comments where people who question climate science should be jailed. All the same topic. The peasants must be protected from KNOWLEDGE, because peasants are slaves. Of course weed works, and of course they know it works. THEY DON'T MAKE MONEY THAT WAY. Who cares how many peasants die for them to make money? The fact that it works is a non issue.

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  3. "She has heard medical marijuana helps children with seizures."

    Well then. There's the problem right there. Read about what people say marijuana is good for. Marijuana cures everything from cancer to stupidity! Sure it does.

    Marijuana gets kids who suffer seizures stoned, and that's about all. Heroin will do the same thing.

    If you believe in modern medicine, then trust your doctor. If you believe in folk cures and cures you read about online, then do what you have to do. Life is nothing but infinitely complex. And if something works for you, then you should go with it. But be careful. Life is unforgiving.

    But no matter what, don't start hyping marijuana as a medical cure. You're not a doctor! And in spreading the nonsense, you and every other pro-dope loser are just spreading more pro-dope propaganda. And THAT propaganda was borne, calculated and is coming from the government of Barack Obama, King Choom.

    Marijuana is on the conveyor belt to becoming a full blown drug addict. And anyone who says otherwise is lying. Marijuana is dope, narcotic dope. That "rush" you feel when you smoke dope is brain damage occurring. That's right. That is what is going on. Your are frying your brain when you smoke dope. Yeah, sure... I know, it feels like you just discovered all the secrets of the universe when you get high on dope. That's feeling is called, euphoria. IT'S A DELUSION!

    All the populist talk about marijuana is only serving to get more and more, younger and younger kids hooked on all kinds of dope.

    Three third graders were busted last year in California smoking dope in their elementary school lavatory. What were you doing in the third grade? I certainly wasn't smoking dope with my friends!


    Get real. This story is pure idiocy.

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  4. Boughten Bread, you are a complete asshole Amerikan with your thoughts about Doctors, the same people who are responsible for most deaths in your shit country! You sure do not know anything about marijuana so keep your stupid comments to yourself because it shows your ignorance!

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  5. Great comment. It proves my point about the delusional mindset of someone high on pot. Why don't you tell everyone how you really feel about your dope?

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  6. You sound like you have Oppositional Defiance Disorder ... ;-)

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  7. If a kid has to has 'to get stoned', in order to stop their seizures, isn't it better they use weed than heroin?
    Are you also saying that being informed is a problem? ( most people are aware of the "official position" regarding marijuana use).....

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  8. You really are a creepy bastard, I am a Dutch Molecular Scientist and have been involved in many totally positive studies concerning the healing powers of Marijuana. You sound like a classic alcohol drinking stupid Amerikan with not a clue what is going on so you spout complete bullshit to make yourself sound important! Have another Martini and turn your useless brain off !!!

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  9. Rafael EspericuetaMarch 31, 2015 at 9:38 AM

    Ignorance these days is a life choice, one that you have made. There is plenty of information available on the Internet - please go educate yourself before you continue to make a fool of yourself.

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  10. do you drink alcohol ?

    "King Choom " is that a racist remark ?

    " Yeah, sure... I know, it feels like you just discovered all the secrets of the universe when you get high on dope. That's feeling is called, euphoria. IT'S A DELUSION!" you realise Carl Sagan smoked pot ?

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  11. what do you say to this father ?
    http://investmentwatchblog.com/jayden-david-had-hundreds-of-siezures-a-day-his-entire-life-the-first-time-he-went-seizure-free-was-the-first-day-his-dad-gave-him-cannabis-oil/

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  12. I'd say, don't buy into the phony ideas being bandied around about marijuana being a cure for everything from ignorance to cancer. I'd say, get your kid the best medical doctor you can afford, and then get a second and even third opinion. I'd say it is despicable your kid is being used to promote dope.

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  13. LMFAO. If it was contagious the world would be a much better place.

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  14. You sir are the first person I will have ever done this to... you are a complete and utter moron and I hope that you are someday on the receiving end of a health issue and counting on BigPharma and modern medicine to nurse you back to health. They don't want you healthy... they want you sick and profitable.

    That you are so against a drug with no ill side effects and that actually works in reducing the amount and severity of seizures and are in favor of drugs that have horrible side effects don't really work that well and are toxic tells me you are nothing but a shill for BigPharma.

    Everything you say is geared towards scaring someone who doesn't know that all of these arguments where destroyed decades ago. But you are praying on people who still believe the "research" done over 60 years ago. The new research disproves these scare tactics and show that the active ingredients in Cannabis could be an untapped gold mine for improving ones health.

    How long until you idiots realize that you are the minority now... time
    to take your 1930's scare tactics and lay them to rest because there are
    people who will educate people with actual information not the rubbish
    you typed out.

    Nothing you say is correct, but I am sure you already know that as no one is truly that stupid in the information age. And this reply is to vent and to show others, that may not know better, just how wrong you are about CBD's.

    Also, read the damn article you inbred idiot. The strain that control's seizures DOES NOT GET YOU HIGH. NOT EVEN A LITTLE BIT. You might as well have written about how beautiful the full moon was last night as it would have been just as relevant to the article as the crap you wrote.

    Read up on Charlotte, the little girl for whom this strain is named, as you are in dire need of Cannabis re-education.

    Shills like you are so easy to prove wrong, all I need to do is show that one of your statements is nothing but a bold-faced lie and then everything you say is easily questioned. So lets hit the big one shall we?

    Cannabis causes brain damage... not even close as it's full of Neuroprotective antioxidants you ill informed ingrate.

    http://www.ncbi.nlm.nih.gov/pubmed/10863546
    http://norml.org/component/zoo/category/cannabis-and-the-brain-a-user-s-guide
    Here's a link to an article by Fox news:
    http://www.foxnews.com/health/2012/03/20/researchers-study-neuroprotective-properties-in-cannabis/
    http://www.letfreedomgrow.com/cmu/cannabis_and_neuroprotection.htm
    http://norml.org/pdf_files/NORML_Clinical_Applications_for_Cannabis_and_Cannabinoids.pdf

    It is very unfortunate that Cannabis is illegal in most western countries because it should be used in fairly large quantities as a supplement but it should be used raw like our fruits and vegies.

    I do apologize to other readers but there is nothing more dangerous then people who have no problem telling people to poison themselves rather then curing themselves. Please read the links I supplied and do further research for yourself... it may save and/or make life manageable for someone you love.

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  15. Tim. He's either a complete moron or a shill for big pharma. All he has are his opinions... not one single link to back him up. He knows he'll loose if it comes down to the facts so he'll do everything but be pulled into an actual debate with facts not personal opinions
    In response he'll name call, pick out spelling/ grammar mistakes absolutely anything to avoid proving what he has said.
    Best to vent and inform that way we know people have a basis to start investigating on their own. Won't take the average person more then 15-30 mins on the internet to see this person for what they really are.
    I would love if you could post any links to the studies you mentioned as I love expanding my knowledge of true medicine, not the one cooked up by the A.M.A.

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  16. my point is are you a racist ?

    and is alcohol your drug of choice ?

    I have a friend who's son has epilepsy and in 4 months he has gone from 9 Grand mal seizure per week to none in over 3 months and his Clonic seizures have almost stopped ...he is 17 so under local law not a child.
    You come across as a anti drugs freak rather than someone who is informed .I understand who hard it is to change a life time of prejudice .

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  17. You're kidding right? You don't honestly believe that do you?

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  18. freewheelinfranklin543April 1, 2015 at 10:52 AM

    Cannabis has been used for over 2,000 years for epilepsy. In the US Cannabis was the drug of choice for epileptics until pot was outlawed in 1937. Cannabis works better at controlling seizures than any current big pharma dope.
    Legal big pharma dope kills around 200,000 Americans a years.
    Without a doubt you are the most ignorant,stupid troll I have ever come across on the net. Long winded! Yes! Do you have any facts? Heck NO!

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  19. freewheelinfranklin543April 1, 2015 at 10:56 AM

    From the beginning of time Cannabis was treatment of choice for epilepsy. Using it now is nothing new. Julius Caesar was an epileptic. Couldn't have conquered Gaul without the stuff!

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  20. freewheelinfranklin543April 1, 2015 at 10:57 AM

    The studies on Cannabis and Cancer are online moron. Do some research and shut the fuck up!

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  21. Marijuana gets kids who suffer seizures stoned, and that's about all. Heroin will do the same thing.

    **The strains used in children's seizures does not make them stoned. They are high CBD, low THC strains. The legal FDA approved, ineffective pharmaceuticals prescribed to these children by the handfuls do indeed make these children high while not helping their seizures.

    If you believe in modern medicine, then trust your doctor. If you believe in folk cures and cures you read about online, then do what you have to do. Life is nothing but infinitely complex. And if something works for you, then you should go with it. But be careful. Life is unforgiving.

    **That's the thing...I don't believe in modern medicine because modern medicine is all about money. It is run by insurance companies and the pharmaceutical industry. Doctors are merely puppets in this dysfunctional system.

    But no matter what, don't start hyping marijuana as a medical cure. You're not a doctor! And in spreading the nonsense, you and every other pro-dope loser are just spreading more pro-dope propaganda. And THAT propaganda was borne, calculated and is coming from the government of Barack Obama, King Choom.

    **The only losers are those not willing to investigate this subject and to read all of the recent and current studies coming from all over the world. You are stuck back in the 1940s and can't seem to educate yourself. Anyone with anything useful to say does not use the outdated term "dope." Anyone who uses that is the one who is a dope.

    Marijuana is on the conveyor belt to becoming a full blown drug addict. And anyone who says otherwise is lying. Marijuana is dope, narcotic dope. That "rush" you feel when you smoke dope is brain damage occurring. That's right. That is what is going on. Your are frying your brain when you smoke dope. Yeah, sure... I know, it feels like you just discovered all the secrets of the universe when you get high on dope. That's feeling is called, euphoria. IT'S A DELUSION!

    **You are on a conveyor belt to full blown ignorance. You are a dope, a uninformed dope who preys on the weakest and sickest among us. Anyone who knows anything about this subject knows that there are many strains. The strains that help children with seizure disorders are high in CBD and low in THC. Neither cause brain damage. There is no proof that anyone is frying their brains using marijuana, in fact the latest research out there is showing that it can help heal the brain and control neurological conditions like seizures, traumatic brain injury, Alzheimer's, dementia, ADHD, Autism, etc. You are the one who is delusional. Every post you make supports that you are delusional.

    All the populist talk about marijuana is only serving to get more and more, younger and younger kids hooked on all kinds of dope.

    **Current studies are showing that the number of children being hooked on drugs has declined even as more and more states have legalized marijuana for medical or recreational purposes. The number of teens trying marijuana has declined immensely in the past decade. Kids are getting hooked on FDA approved pharmaceuticals, not a plant called marijuana.

    Three third graders were busted last year in California smoking dope in their elementary school lavatory. What were you doing in the third grade? I certainly wasn't smoking dope with my friends!


    **Link please.

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  22. Maybe if you weren't so ignorant you could actually become informed on this subject. Instead you sit behind your computer spouting your delusional comments and attacking the people who are helping their children. Shame on you.

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  23. He is either an active alcoholic or one on a dry drunk. All the classic symptoms.

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