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Marijuana oil is hope for child's family

Outlawed oil is known to thwart epileptic tremors

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Oil derived from marijuana represents one thing for Valerie Weaver: hope that she might regain the son she lost to seizures.

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Valerie holds son, Preston, after feeding him. Valerie explained Preston's seizures have increased in intensity over the years. She thinks cannabis oil would reduce his seizures, an effect seen in Colorado where it is legal.   JON-MICHAEL SULLIVAN/STAFF
JON-MICHAEL SULLIVAN/STAFF
Valerie holds son, Preston, after feeding him. Valerie explained Preston's seizures have increased in intensity over the years. She thinks cannabis oil would reduce his seizures, an effect seen in Colorado where it is legal.

Even though the Georgia Legislature failed to pass a very narrow medical marijuana bill that would have allowed research on the oil in specific cases, Gov. Nathan Deal is trying to find a way to allow it. And even without the Georgia law, a research trial at Georgia Regents Medical Center or elsewhere in the state might be possible, officials said.

Legislation that would have allowed for clinical trials in Georgia at academic medical centers like GRMC was “held hostage” the last night of the legislature and was not allowed to be put up for a vote, said Rep. Allen Peake, R-Macon, its main proponent.

“It was a crushing defeat for a lot of the families,” he said. But since then, Deal announced he would try to seek a solution through another avenue to allow that access.

“It’s going to require some study because of the complexities of complying with federal laws,” spokesman Brian Robinson said. “But he wants to help these families get the help they need.”

Peake said he is encouraged by that.

“He’s got a lot of smart lawyers around him, a lot of smart advisors around him,” he said. “I’m hopeful and optimistic that the governor is going to be able to come up with something that is going to help these families immediately, to do what we failed to do in the legislature.”

Peake and others advocating for the bill are also pursuing other potential solutions, such as lobbying Congress to change marijuana from a Schedule 1 drug to a lower schedule that would allow for cannabidiol oil to be transported across state lines, Peake said. That is also the aim of a petition the Epilepsy Foundation started on the White House’s Web site to change marijuana from a Schedule 1 controlled substance, which is considered to have no medical value, to a lower schedule, said Angela Ostrom, vice president of public policy and advocacy for the Epilepsy Foundation.

Because it is Schedule 1, that requires clinical trials to get additional approvals from federal drug agencies, restricts drug sources, and requires a much higher level of security, she said.

“There is a lot of increased protocols and securities that are extremely costly and we think a deterrent to that kind of research,” Ostrom said.

Even with restrictions, clinical trials are moving forward with one pharmaceutical company, GW Pharmaceuticals, on its cannabidiol drug called Epidiolex.

Dr. Yong Park, who heads up the pediatric epilepsy program at GRMC, said the program is awaiting word from the company on when more clinical trials will begin and whether the company’s approvals or pending approvals from the Food and Drug Administration could allow for it to be done in states that have not passed medical marijuana legislation.

It could be “in your state it has to be legalized first,” he said. “Or even though it is not legalized … as long as you belong to this study you are okay. We don’t know yet.”

In fact, Peake said, “from our standpoint, from everything we looked at, there wasn’t a need for legislation for that particular clinical trial” to take place in Georgia. He spoke to a pediatric neurologist in Atlanta who is getting set up to participate in that clinical trial, but it will only be for 25 patients.

The federal-state complexity is adding to the confusion and it could be that state legislation is necessary, Ostrom said. The bottom line is getting families access to the cannabidiol oil to see if it will help, she said.

“Right now what we’ve been advocating for is compassionate access to say that while we don’t know what the best route for marijuana is, we are seeing for people with catastrophic epilepsies that these anecdotal stories are providing a venue for hope,” Ostrom said.

That is certainly the case for Weaver and her 6-year-old son, Preston. He has Lennox-Gastaut Syndrome, a very severe form of childhood epilepsy that often is accompanied by developmental delay.

He was born seven weeks premature and was struggling to meet developmental milestones like holding his head up, sitting up and rolling over. Still, he had managed to learn to drink from a bottle and eat baby food, was sitting up with help and could hold himself up for a short time.

Around five months old, however, he would suddenly look away and smile, Weaver said. They didn’t know it at the time, but it was later diagnosed as infantile spasm. Tests confirmed severe brain damage, seizures seemed to bombard the little boy and he began to regress.

“All of that got wiped away,” Weaver said. “Everything he learned.”

Now at 6 years old, “he’s basically like a two- or three-month-old baby,” she said. “He can’t sit up, he can’t hold his head up.” They had to put in a tube to feed him because he lost the ability to eat. They have tried 12 or 15 medications without finding a combination that truly works and he still suffers seizures every day. And he is not alone.

“There’s an entire community of these children that could benefit from this,” Weaver said. “Everybody needs to be pushing for this to help these kids.”

Peake said he spoke to GW Pharmaceuticals and an official told him it could be 2017 before the drug is approved and widely available.

“For these families, that’s too long to wait,” he said. “Some of these children may not live that long.”

What makes it all the more urgent are those families that have moved to Colorado, where the cannabidiol oil is legal, and “are seeing amazing results, really life-changing, life-altering changes in their behavior and reductions in seizures.” Peake said.

Part of his effort is trying to raise financial help for those families that need to move to Colorado. Weaver said she would consider it “in a heartbeat” but it is not something her family could afford.

While the anecdotes are great, and the cannabidiol has anti-seizure effects in animal models, good human clinical trial data is lacking and still needed, Park said.

But those stories are where Weaver is pinning her hopes for the future for her son, who is blind and noncommunicative. With the cannabidiol, could he learn to eat again and have his tube removed, she wonders. Without a constant barrage of procedures, what would emerge from her son?

“I don’t know that he even understands what I am saying to him right now,” Weaver said. “He doesn’t respond to me any way at all. Could he learn to say, push this button for yes or push this button for no? To me the possibilities are endless. We don’t have any way of knowing. I am so eager, very, very eager to find out.”

HOW DOES MEDICAL MARIJUANA DIFFER?

Passing medical marijuana legislation would not lead to recreational use and the substance being made legal would not provide a “high,” proponents said. In strongly worded language in House Bill 885, it states that it not “be construed as any intent by the General Assembly to be moving in the direction of the legalization of the recreational use of marijuana or other controlled substances.” The cannabidiol oil being promoted contains very little tetrahydrocannabinol, the main psychoactive ingredient in marijuana. “It’s not like we’re out trying to get our kids high,” said parent Valerie Weaver, who wants to see the cannabidiol oil legalized in Georgia to help her son’s seizure disorder.

– Tom Corwin, staff writer

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wmarkw
164
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wmarkw 03/30/14 - 08:51 am
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GiantsAllDay
9572
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GiantsAllDay 03/30/14 - 10:01 am
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7
Oh my freakin Gawd!! I

Oh my freakin Gawd!! I commented about this yesterday--And now the AC decides to do a story??? The AC needs to do some reporting and ask questions why the Georgia Legislature is so mean and cruel to little children. But yet when a gun bill comes to their desks---well, they will pass that all day long. There are parents with children camped out on hotel rooms in Colorado!! AC PLEASE interview them!!

GiantsAllDay
9572
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GiantsAllDay 03/30/14 - 10:07 am
5
7
Little Charlee from Utah is

Little Charlee from Utah is dead. But Utah's law is named for her. Why cant a reporter from the AC do an interview with some CSRA reps?? Preston, I am praying for you, buddy--but too bad for you, you live in a state where all they do in Atlanta is pass laws to let people carry guns wherever they want to... They don't give a rat's butt about your pain and suffering...........

GiantsAllDay
9572
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GiantsAllDay 03/30/14 - 10:22 am
3
7
Utah punted on this--but at

Utah punted on this--but at least they are in the game. Georgia doesn't even want to play.. So AC do some reporting and ask why Georgia doesn't want to play. I bet it is because there are too many Christians here doing what Jesus asks them to do............

GiantsAllDay
9572
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GiantsAllDay 03/30/14 - 10:31 am
3
8
I wonder if MyFather15 caught

I wonder if MyFather15 caught Valerie Weaver with a little weed and she explained to him that she was just trying to lessen Preston's suffering. Would MyFather15 slam Valerie's head on the hood of his car, cuff her and take her to jail???, with little Preston watching?? Maybe Preston is crying out in pain, "please don't take mommy to jail!!" MyFather15's response is sorry buddy but mommy is evil for having a bit of weed on her, and the state of Georgia demands me to take mommy to jail. Valerie, you should take Preston, if he is able, and sit on this ruthless governor's doorstep. If Preston is too sick to go, sit on his doorstep with a picture of Preston in your hand....

GiantsAllDay
9572
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GiantsAllDay 03/30/14 - 11:43 am
2
7
http://m.sltrib.com/sltrib/mo

http://m.sltrib.com/sltrib/mobile3/57672431-219/oil-cannabis-epilepsy-ma.... Georgia Senate and House. Heartless bastards. Why did Utah do what you wouldnt do??

GiantsAllDay
9572
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GiantsAllDay 03/30/14 - 11:57 am
3
8
Like I have said before--The

Like I have said before--The state of Georgia will protect unborn children from the moment of conception. They even want to throw women and their doctors in jail for agreeing to an abortion.. But hey kids!!!!!, after you are born, the state of Georgia says you are on your own!!!

Sweet son
10323
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Sweet son 03/30/14 - 01:41 pm
3
1
Take a chance! I would!

Sealed in a container and washed thoroughly there would be nothing for a drug dog to sniff.

Drive sensibly, don't get stopped and it would work.

I would do anything for my child!!!

Little Lamb
45818
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Little Lamb 03/30/14 - 01:55 pm
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2
Not Complete

From the story:

Legislation that would have allowed for clinical trials in Georgia at academic medical centers like GRMC was “held hostage” the last night of the legislature and was not allowed to be put up for a vote, said Rep. Allen Peake, R-Macon, its main proponent.

This isolated paragraph deserves more context. The main person who held the cannabis oil legislation "hostage" was Columbia County's own Ben Harbin. There was large, bipartisan support for the cannabis oil legislation. But when Harbin and the other sponsors of the autism insurance mandate could not gain support for their bill, they cobbled it onto the medical marijuana bill. The autism coupling turned out to be a poison pill, and with good reason. The autism bill was horrible, but the marijuana bill was good. Thanks a lot, Ben.

GiantsAllDay
9572
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GiantsAllDay 03/30/14 - 02:07 pm
1
7
If I show MyFather15 my weed

If I show MyFather15 my weed card from California, he will still slam my head on the hood of his cop car and cuff me and take me to jail and insist that I have a police record. thereby ruining my life......

GiantsAllDay
9572
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GiantsAllDay 03/30/14 - 02:12 pm
1
6
It seems like today, the LEO

It seems like today, the LEO people and the Baptists are pretty much silent about this issue.. They must be in church or out arresting people....

Gage Creed
17103
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Gage Creed 03/30/14 - 02:50 pm
3
3
GAD must have smoked some

GAD must have smoked some JERKWEED.....

BTW... when you step down off of that soap box way out there in Cali, you should probably read about all of the Georgia people and professional associations that support this cause.

Just remember all it takes is a politician to really screw up the works..

GiantsAllDay
9572
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GiantsAllDay 03/30/14 - 04:42 pm
0
1
ok

ok

GiantsAllDay
9572
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GiantsAllDay 03/30/14 - 04:44 pm
0
2
OK creed

OK creed

GiantsAllDay
9572
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GiantsAllDay 03/30/14 - 04:48 pm
1
5
The Augusta Chronile has

The Augusta Chronile has nothing to say do they??? Just to say LET US HAPPEN to HAVE guns on college campuses

Gage Creed
17103
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Gage Creed 03/30/14 - 05:13 pm
3
2
GAD read LL's comment... I

GAD read LL's comment... I think you ire is displaced... it seems that Ben Harbin tried an end run on this legislation and killed a bill that actually made sense...

Why not address Ben Harbin as the source of your anger?

InChristLove
22472
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InChristLove 03/30/14 - 05:38 pm
2
1
Because Gage Creed, if GAD

Because Gage Creed, if GAD took the time to actually read someone's comment then he'd have no ground to rant and rave against MyFather15 and CHRISTIANS.

" I bet it is because there are too many Christians here doing what Jesus asks them to do............"

This has nothing to do with Christians GAD.

fedex227
11187
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fedex227 03/30/14 - 06:57 pm
1
4
They didn't just deny access to the drug ...
Unpublished

They denied even allowing the state to TEST its effectiveness. Denying clinical trials and possible access to a substance that could relieve the suffering of children. Hmm, I wonder what Jesus would say.

Tell it like it is GAD.

Gage Creed
17103
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Gage Creed 03/30/14 - 06:16 pm
3
1
fedex227.. did you bother to

fedex227.. did you bother to read any of this?

No need to answer as your post indicates your single-minded attack on Christians, regardless of the facts.

fedex227
11187
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fedex227 03/30/14 - 06:59 pm
1
4
Blame it on politics then, why is Georgia lagging ?
Unpublished

What is the 'logical' reason not to pass this?

The Utah House gave final passage Thursday to what it now calls "Charlee’s Law," a bill to allow use of nonintoxicating cannabis oil by Utahns. HB105 passed on a 58-9 final vote, and was sent to Gov. Gary Herbert for his signature. Watching it pass was Charlee Nelson of West Jordan, a 6-year-old who might have benefitted from cannabis oil, but is near death. She and her parents, Catrina and Jeff Nelson, were invited onto the House floor and applauded by members. Rep. Gage Froerer, R-Huntsville, included intent language to dedicate "Charlee’s Law" to Charlee’s family and all of the sick Utah children seeking relief from their suffering.

That's how it's supposed to work.

Gage Creed
17103
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Gage Creed 03/30/14 - 06:57 pm
3
2
Open note to the Weaver

Open note to the Weaver family..

I'm wishing you all get the treatment young Preston needs. One only has to Google CBD and Epilepsy to see how much activity there is on getting this medication to the kids that need it...

Hopefully the politicians and government will facilitate making this happen rather than getting in the way.

Gage Creed
17103
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Gage Creed 03/30/14 - 07:00 pm
2
3
Fedex... some low-rent

Fedex... some low-rent politician is not supposed to tack on unnecessary garbage to a bill just because these kids need this so bad...

InChristLove
22472
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InChristLove 03/30/14 - 07:12 pm
1
2
Dang, if someone isn't lowest

Dang, if someone isn't lowest of the low. Why thumbs down Gage Creed's comment to the family, showing support. Unbelievable.

Gage Creed
17103
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Gage Creed 03/30/14 - 07:17 pm
2
1
Tom Corwin... I know you

Tom Corwin...

I know you follow these comments some time... after some searching on this topic I see some studies that suggest that the CBD in hemp could have the same effect and that the hemp version is legal.

Do you have research on the hemp version?

Kos
114
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Kos 03/30/14 - 07:25 pm
0
0
Governor Nathan Deal need to
Unpublished

Governor Nathan Deal need to find ways to expand Medicaid for the uninsured Georgians. Not "cannabis."

itsanotherday1
42836
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itsanotherday1 03/30/14 - 08:08 pm
3
2
Ben Harbin; you got some

Ben Harbin; you got some 'splainin to do pal. This is the kind of legislation we NEED for people who can benefit from cannabis extracts. It separates those just getting high from those gaining medical benefit.

Little Lamb
45818
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Little Lamb 03/30/14 - 08:29 pm
2
2
Sausagemaking

Fedex227 posted:

The Utah House gave final passage Thursday to what it now calls "Charlee’s Law," a bill to allow use of nonintoxicating cannabis oil by Utahns. HB105 passed on a 58-9 final vote, and was sent to Gov. Gary Herbert for his signature.

Yes, and the Georgia General Assembly was ready to pass a similar law and Governor Deal was ready to sign it. But the effort was sabotaged by Ben Harbin (and others) who attached a provision requiring medical insurance companies doing business in Georgia to include coverage for an experimental, controversial, and very expensive psychiatric "treatment" regimen intended to improve the behavior of autistic people. The costs would be astronomical, and the benefits unproven. That is what is known as "junk medicine."

Place the blame on Harbin, not on the General Assembly or Deal.

corgimom
32144
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corgimom 03/30/14 - 09:14 pm
1
5
LL, children with autism are

LL, children with autism are just as deserving of treatment as children with seizures. As for the cannabis oil, it too is experimental, unproven, and is "junk medicine". You can't be for one and against the other, one is not "better" than another. You just don't see heart-tugging photos of autistic kids- who can also have seizures, too.

How much of that oil is toxic? Nobody knows. What are the long-term effects of it in children? Nobody knows. What are the remedy for accidental overdose? Nobody knows. What is the remedy for medical overdose? Nobody knows.

And every drug has side effects. And every drug that affects the brain has side effects, too. What are they for children? Nobody knows. Because childrens' brains are still growing and developing, medicines, especially ones that affect their brains, work far differently on them than it does adults.

Lots and lots of drugs that come on to the market are touted as great, life-saving, life-altering drugs- because there isn't enough data on them. Then, hey, problems start appearing. Serious problems start appearing, and some even lead up to death.

Whenever you hear something about medicine that is too good to be true- it's too good to be true.

corgimom
32144
Points
corgimom 03/30/14 - 09:15 pm
2
4
I predict that within one

I predict that within one year, there will be lawsuits filed against the makers of this drug. The litigants will either claim that it didn't benefit their child, made their child worse, or their child died, and it was because of the drug.

oldredneckman96
5095
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oldredneckman96 03/30/14 - 11:07 pm
0
3
Weed
Unpublished

We have the way to test, approve, maintain the safe distribution of and control the abuse of any drug we want to in this country, pot in any form, included. Go to any licensed drug store and ask them how many different drugs are available. The hysteria surrounding pot and its claims of cures for everything that ails us reminds me of the traveling “medicine men” who road into town selling alcohol mixed with anything they thought would stretch it out. If my child is sick I guarantee I will not go underground to buy some untested, unqualified and unknown substance. Our lawmakers could provide funds to have the AMA work with the FDA and reputable drug companies to explore options for the efficacy of pot extracts. What we have now is a back door, underhanded way to try to circumvent the medical system we have in this country and get pot legalized of recreation just as they have done in Colorado.

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