>> Monday, February 10, 2014

I awoke this morning with a clarity of purpose that only a night like last night can provide. Bug had a MASSIVE seizure that cancelled everything we were doing: celebrating Papa's 71st birthday mostly.

It was an ugly, ugly, ugly one and took him a long time to come out of it and fully recover. I, on the other hand, may NEVER recover. He almost got Diastat.

But, the extra Clonazepam, (remember that one? The one with these lovely side effects: helped him and he slept well.

Until 7:45 this morning when he had another large seizure.

Before that seizure I woke up thinking: the prevention people attacking this cannabis product we want to try have NEVER been in this type of battle before. Do they know what they are actually doing? I don't think they do. I think they are being used to forward another monetary agenda.

Before, they were preventing, or attempting to prevent, because from my perspective an increase in Heroin use in Utah is a failing grade (And how are these kids getting it? It''s illegal!) prescription and illicit drug abuse. Hopefully, preventing death. Because isn't that the goal? Keeping people alive? Or do I miss the point of preventing drug abuse?

NOW, they are working to 'prevent' a life saving treatment. Their 'opponents' this time aren't drug users that are seeking solace in running away from the world by using mind altering this time, they are attacking Mom's who have been told their children are very sick and dying. They are attacking a Parent's right to administer an oil that has been PROVEN to be effective in saving lives. THIS time they are preventing life.

Let's look at their argument, shall we?

Insult number 1 - we aren't being smart
They are telling us that we need to be smart about this. That our emotions are getting in the way.

Nope - our emotions are in check. Otherwise you wouldn't have a leg to stand on. Literally...we would be ripping your legs off. And even if they weren't; does that make our need less factual and important? We aren't being smart because we don't agree with you on this one? Get in line, I don't agree with a lot people when it comes to the treatment for my son. Doesn't mean I am not being smart, it means I am thinking for myself.

I have witnessed over 10,000 seizures and I am on the low end of some of these parents who children I am trying to help. We KNOW seizures. We KNOW them. And we know the effect they have, how serious they are and how we must do everything to stop them. In the course of trying to stop them, we research, and we talk to anyone and everyone who has ANY insight and we cull the information that is valuable and disregard the rest. We do not sit around and wait for science to catch up with our need. We make it happen. We stand in front of 'experts' with 150 pages of printed research that we have read back to front and highlighted the pertinent sections. Saying we are not being smart...ya that's a stupid approach.

Insult Number 2 - You should wait for the IND or I do not believe that your child's situation is that dire - i.e. your lying
They are telling us we should wait for the 'safe' alternative which, just so happens to be a Pharmaceutical product which JUST started human trials. Although, it did receive Orphan Drug status...without actually BEING a drug. What do I mean? It had ONLY ever been tested in animals when the FDA gave it Orphan Drug Status. That's like recognizing that my big toe has food value because Aiden bit it the other day. Really?

This 'safe' treatment is 14 months behind the Alepsia/Charlotte's Web administration. Time is of the essence and this 14 months could mean the difference between life and death, between knowing the alphabet and relearning the alphabet, between walking for the first time and needing a wheelchair, between knowing what a nissen tube is and eating a cookie. Curiously, they are not saying CBD ISN'T beneficial anymore, they know that if they did, the argument to make us wait for Epidiolex is mute and has no merit. It would telling us to wait for a vial of coconut oil.

Every Doctor I know says that the AED's Bug takes are dangerous and to be avoided. Truly.

Insult Number 3 - We are a front for another purpose - legalizing Medical Marijuana
What? Just what? If I wanted to give Bug Marijuana I would go to Lone Peak High School on one of my many McDonald's run and pick it up. I wouldn't tell anyone in the State Legislature about it and I wouldn't be working hard to get people to have it so they can abuse it. Show me ONE research study that says Marijuana increases productivity. Not interested in higher THC than needed...and it seems to be just enough to activate the other compounds that are proving to be effective. I give him enough legal mind altering and dangerous drugs by prescription, I don't WANT to give him any more. So, say this again to me...I dare you.

Insult Number 4 - This is about making money
They are telling us that The Stanley's are millionaires who are only it in for the money. Um no. They are making just enough money on this to continue making it and they are working with people who can't afford it to be able to afford it. The ONLY people making MILLIONS at the moment is the Pharmaceutical Company that they are promoting. This is where it gets SUPER fun.

They are a publically traded company as of 'May 2013 raising total net proceeds before expenses of $30.7m (£19.8m)'. In June of 2013 their stock was worth $8.46 per share. Now, it sits at $61.46. Exactly WHO is making money off of our misery?

I could go on but the point is really this:

It has NO public safety concern.
It is NOT smoked.
It is NOT Marijuana...wanna see?



2 (a) IN GENERAL.—Notwithstanding the Controlled

3 Substances Act (21 U.S.C. 801 et seq.), the Safe and

4 Drug-Free Schools and Communities Act (20 U.S.C. 7101

5 et seq.), chapter 81 of title 41, United States Code, or

6 any other Federal law, an institution of higher education

7 (as defined in section 101 of the Higher Education Act

8 of 1965 (20 U.S.C. 1001)) or a State department of agri-

9 culture may grow or cultivate industrial hemp if—

10 (1) the industrial hemp is grown or cultivated

11 for purposes of research conducted under an agricul-

12 tural pilot program or other agricultural or academic

13 research; and

14 (2) the growing or cultivating of industrial

15 hemp is allowed under the laws of the State in which

16 such institution of higher education or State depart-

17 ment of agriculture is located and such research oc-

18 curs.

19 (b) DEFINITIONS.—In this section:


21 term ‘‘agricultural pilot program’’ means a pilot pro-

22 gram to study the growth, cultivation, or marketing

23 of industrial hemp—

24 (A) in States that permit the growth or

25 cultivation of industrial hemp under the laws of

26 the State; and

1 (B) in a manner that—

2 (i) ensures that only institutions of

3 higher education and State departments o f

4 agriculture are used to grow or cultivate

5 industrial hemp;

6 (ii) requires that sites used for grow-

7 ing or cultivating industrial hemp in a

8 State be certified by, and registered with,

9 the State department of agriculture; and

10 (iii) authorizes State departments of

11 agriculture to promulgate regulations to

12 carry out the pilot program in the States

13 in accordance with the purposes of this

14 section.

15 (2) INDUSTRIAL HEMP.—The term ‘‘industrial

16 hemp’’ means the plant Cannabis sativa L. and any

17 part of such plant, whether growing or not, with a

18 delta-9 tetrahydrocannabinol concentration of not

19 more than 0.3 percent on a dry weight basis.


21 The term ‘‘State department of agriculture’’ means

22 the agency, commission, or department of a State

23 government responsible for agriculture within the

24 State.

That bad boy was signed into law on Friday. It IS Hemp. So there. Shut up about that already.

It has NO addictive properties.
It will NOT open any door because it is a nutraceutical and needs to be recognized as such.

This time, the game is more than stopping people from having a 'good time' in their own home, or preventing DUI related injuries and this time...prevention MEANS death and decline. Prevention is not prevention this time. It's senseless tragedy.

Oh and it's not a drought year either.


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