Now THAT'S some argument...

>> Sunday, February 23, 2014

I have to do this. HAVE TO. It's long, sorry. 

We have heard so many incredibly circular, hypocritical and down right DUMB arguments against the treatment we want for Bug. I have to list them...and the truth of course. Not MY version of the truth just THE truth. You'll see.

Marijuana is bad.

Ok...I'll give you this one. Show me ONE study that supports Marijuana INCREASES productivity.  I prefer to not sit around and stare at fruit but I DO NOT condemn those that do. Their choice. I don't do it, never have and never will. Free will. Don't harm anyone and I won't slap you.

This is Marijuana.

Nope. Sorry. That SLANG was promoted and subsequently accepted as fact in the Tax Act of 1937. There IS no Marijuana Plant. It is ALL Cannabis . Since it is ALL Cannabis we must turn to the law to define the difference between Hemp and the psychoactive plant. THAT comes into play with the 9th Circuit Court of Appeals and the Hemp Industries Association in 2004 which states:

"[T]hey (DEA) cannot regulate naturally-occurring THC not contained within or derived from marijuana-i.e. non-psychoactive hemp is not included in Schedule I. The DEA has no authority to regulate drugs that are not scheduled, and it has not followed procedures required to schedule a substance. The DEA's definition of "THC" contravenes the unambiguously expressed intent of Congress in the Controlled Substances Act (CSA) and cannot be upheld"

Based on this ruling, the DEA began to issue exemptions for Hemp grown outside of the United States. Or so we hear. Either way, Hemp importation has continued and occasionally, tests are run on some of the products to ensure they have very low THC, but not every batch, and not every country. The DEA admits that the courts are contradictory in this regard making enforcement extremely difficult.

Enter the Agricultural Act of 2014. Which defines Hemp.

"(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. "

That pretty much ends that, doesn't it?

It is not safe.
This is baffling. Truly. It's psychoactive cousin has NEVER been blamed for a death, stupidity, yes, deaths; no. And as far as the 'long term side effects' CBD itself has been shown to have NO impact. High THC exposure does, but NOT CBD. Do you doubt this? Well, you might, if you weren't researching the HELL out of it to ensure it will not hurt your child. But if you actually DO THE RESEARCH you find this very interesting study .

Which brings up this: IF it is not safe, as claimed, why, based on everything that is holy, would you want us to give our children a HIGHER dose? Even under an FDA program? That would be reckless wouldn't it?

But since you bring it up...are any of the AED's my son has already taken, safe? EVERY Doctor that we talk to admits: no. And yet, they STILL bring up that this isn't safe. It has a better safety profile than ANY AED. Please, stop saying that. Read the research before you speak, please.


There is a Pharma product, you should use that.
Yep, we wanted to. We can't. It is not available to us. And until I am contacted by a Doctor running one of their programs and told MY SON is enrolled (he is signed up for 3) then it is NOT an option, is it? Which would mean, he has to wait at least 3 years and not the 5 months we are looking at waiting. And we come back to: IF it is not safe, as claimed, why would you want us to give our children a HIGHER dose?

You are asking the legislature to regulate a drug or be involved in healthcare.
Again: this is not a drug. This is a Hemp product that has been confused as a drug. You can not patent a plant. That would be like taking a patent out on a tomato or potato or asking the legislature to let you eat the tomato/potato. It's legal to eat the tomato already, we just want to make sure that because you can make the poison nightshade from the tomato plant that we won't be arrested for possessing it. 


Tomatoes are from the genus Solanum L. - nightshade 
http://www.itis.gov/servlet/SingleRpt/SingleRpt?search_topic=TSN&search_value=521671

And as for the healthcare statement: We are asking you to STAY out of it. MY son's Doctor, the specialist, the researcher, the man that EVERY other Doctor in the State and out of the State that my son sees, defers to for his epilepsy treatment, supports this. He wants to treat his patients with this.  He is completely on board. Doctors have different opinions but to say Doctors do NOT support this is just simply not the case. They do, just not SOME Doctors, but they are NOT the specialists he needs so they are not important to his care and need to stay out of this. They don't stop by and provide input when he is in the hospital in Status. When he is in Status, I don't see them jumping up and down to get involved in his care. So why now?


We are asking the legislative body to run an IRB study or give UofU permission to do so:

The UofU has studied over 35,000 products without the permission of the legislature. They have already initiated the process to be able to research, on mice, under IRB guidelines. They do NOT need legislative approval and are not seeking it.

The UofU is ready to test on Humans.
We just heard this one. We were told, in committee, that an important text message was just sent and it said: Dr. White is ready to test on humans. Now, I happen to know Dr. White and we just spoke with him on the 12th of this month. I was testifying when this comment was made and I had to correct: Dr. White does NOT test on humans and he has asked to research this in mice and rats and they are working on getting that set up. Our legislative team is helping them do that. We want the studies. It helps ALL of us to research this. And we are the BEST population to be a part of the studies. It shows promise, our children NEED something different, and we are VERY used to keeping detailed records. BUT they are NOT testing on Humans at the UofU...unless they let us have this, then they will be, won't they?

GW will file a lawsuit:
The product would ALREADY violate patent law and GW would ALREADY be filing cease and desist notices to the Realm of Caring. GW has over 100 Million Dollars to spend on development for Epidiolex, I am sure they can afford a patent attorney. No, we will NOT be sued if Realm of Caring is not ALREADY being sued, it's not as if the product infringes on the patent by GW in Utah but not Colorado.

There are more, but really? Do you want to keep reading? And tell me...are any part of my responses NOT true?

Read more...

Divine?

>> Friday, February 21, 2014

As my Bug continues to stumble into walls, drool and refuse to eat I am getting more and more impatient with the nonsensical reasons some are giving to not support the use of High-CBD/Low-THC.

They are not seeing MY son.

They are seeing all things that are not yet real, are not yet tangible that may not come to pass. And they are thinking of themselves and themselves only. It is baffling and very disheartening.

They are saying things like: You have to think of the children.

Huh?

I want to correct them: No, what you mean is you have to think of the TYPICAL, HEALTHY children.

They say this because it is automatic for them, the ones who say it say it all the time to get what they believe is right for the children THEY represent. But I can say it to, and have. I say: Oh but I AM thinking of the children...the forgotten ones. The ones who make you nervous, the ones you would rather not see. The ones that can't say no, the ones that will die sooner than they should. I AM thinking about those children, are you?

Bug is no longer smiling randomly, he is not running, he is just looking like he is ready to fall over and quit. But he won't quit. It isn't in him to do that. This child is strong, very strong in constitution and physical prowess. If he wasn't, he would have died in 2011. He was close a few times, but he didn't give up and neither will I.

We heard a legislator say this was a moral dilemma for him. Really? I mean really?

YOUR Morals have NOTHING to do with this. Unless you want to use it as an excuse. Want to know why? Hold on to your moral compass because here we go:

Morals:

"a person's standards of behavior or beliefs concerning what is and is not acceptable for them to do."

YOU aren't doing anything to compromise your moral standards because YOU aren't giving YOUR child some of the most overdosed drugs in the nation. YOU are standing above it all imposing YOUR value system on a child that doesn't need you to balk at giving him the chance to have a treatment that won't kill him. MY moral structure is what is in play here. I am the one giving him these destructive and addictive medications and you know what: I believe God sanctions my actions.

People tell SN Mom's all the time how they are blessed to have such sweet spirits in our charge. How God gave them US because we are the chosen.

Until now? Now, I am being selfish and ignorant of the harm I could do to my child. I laugh. Either God trusts me with Glenn or he doesn't. You can't have it both ways.

I believe, that this treatment was divinely inspired. And I am NOT the only one. Many good Christian families have prayed long and hard about this and their prayers have been answered: The KNOW that God wants their child to have this. Those people, so close to God because they are the caretakers of his special spirits, have prayed and they KNOW that this is right and they KNOW it is acceptable.

So, unless you are putting yourself above these families, above my son, above my relationship with God and above Brigham Young himself, who said: "seek out the places most suitable for flax and hemp and there let them be grown." 1861 (This is a commandment) Journal of Discourses 9:34-35" then you should have NO moral issues with this.

EDITED: Oh, and you know those kids that you ARE worried about, the ones that should have their OWN moral compass, the compass not based on whether or not my son takes Valium or not? Ya, I have three of those too. And I tell them: If it affects your thinking, if it alters your personality or your value system, don't take it. It will eventually destroy the person you want to be and an heir to ancestors that came before you. You be YOU and not a chemical you.

My 8 year old asked me:

Why do people do drugs?
I said: because they don't like who they are, for whatever reason, and they want to try to feel better. But, answer me this: Will they still feel better when it wears off?

Tay: No. So it makes no sense does it?

Tay: Nope unless your Bug. He takes medications to help him.

See? She GETS THE DIFFERENCE!

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What I have come to realize...

>> Friday, February 14, 2014

Throughout this legislative advocacy, I have learned a few things:

Relationships are fickle things that can be made and unmade based on opinion and perception.

Truth is not as important as hype.

My son is STILL being overlooked.

He is NOT as important as public perception, even though that perception is a lie.

The medications he takes to stop his seizures are the number one cause of an overdose trip to the Emergency Room. Get that one? Benzo's...not CBD. If one more Doctor tells me that it is unsafe and needs to be studied, I swear to everything I will unleash an unholy tirade designed to destroy a human being. http://www.cdc.gov/homeandrecreationalsafety/overdose/facts.html

There are members of the House that do NOT care about their constituents and would 'have to think about' whether or not they would actually give their child an antiepileptic drug let alone High-CBD/Low-THC. Yes, that means they might just let them seize until they die. True story...to my face.

What good is air quality if my son is not breathing?

There are some really beautiful people in the world.

Ugliness is sometimes wrapped in Prada and has an MD.

Lies are only as good as people are willing to believe.

In Utah, people will believe anything wrapped in expensive paper.

Death...is NOT a motivator but greed is.

The people that say I am being selfish...want something for themselves.

There are some beautiful people in the world.

We have a great Doctor.

I have some fabulous friends.

The community DOES care about Bug.

I am a natural cynic.

BUT

There are some really beautiful people in the world.


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Prevention?

>> 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: http://www.rxlist.com/klonopin-drug/side-effects-interactions.htm) 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...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 drugs...no 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?

OK:

SEC. 7606. LEGITIMACY OF INDUSTRIAL HEMP RESEARCH.

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:

20 (1) AGRICULTURAL PILOT PROGRAM.—T he

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.

(3) STATE DEPARTMENT OF AGRICULTURE.—

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 death...no 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.


Read more...

Exactly who's child is this?

>> Saturday, February 8, 2014

On October 25, 2005 I lost ANY control that I might have had over the life of my son. For most parents, that happens when their child becomes a teenager and exerts their right to freedom. Freedom to make their own choices, good or bad and hopefully deal well with the consequences of their decisions.

For me, he was 2.

At the age of 2 he had his first seizure and so began the next 9 years of hearing:

It's very unfortunate to see.
It's just Autism, I can stop the seizures but you will have to go somewhere else for the behavioral issues.
It might just be a case of 'bad brain' and you will have to learn to live with it.

I was told NO for 5 years to the test that ultimately gave us our diagnosis. A diagnosis that, if it had been found earlier, probably would have stopped the deterioration the daily seizures caused and MIGHT have had a different outcome in 2011. He might NOT have been in non-convulsive Status 4 times that year. He may be a different child, with NO seizures. I am not exaggerating.

We trusted the medical community and we still do, cautiously. But I have NOT had real control over the decisions to the health and well being of my child since he had that first seizure. His seizures were made worse by some of the medication we tried. And I had to sign TWO waivers saying that I would watch carefully for a life-threatening rash. As I read the long list of side effects that these medications cause I saw things like: Sterilization, blindness, liver failure, and death. And yet, I opened his mouth and put the pill in. No parent should have to think they may be killing their child while trying to help them.

I still check his skin daily for new marks or rashes. Because even though he did not develop the rash immediately upon starting the medication he still could, at any time. And it could KILL him...in horrible ways. He literally would burn from the inside out.

We repress these possibilities, we do not dwell on them but this legislative endeavor has brought them all forward.

I am STILL turning my son's health over to someone else. A body of 10 people will most likely decide what is best for him.

And I can do very little about it because some are more interested in perception. Seriously...how it appears? THIS is YOUR concern? Pretty heartless and reckless isn't it?

I met a man who said he was speaking for me because I was being taken advantage of in a very stressful and delicate situation. Me? Really?

This man told the legislators this as well. He has a PhD. So they will listen to him. He doesn't care about my son. All the Doctors I begged for tests and denied me, they didn't really care either. And the legislators on Capitol hill don't care. Not really. And they don't care because the federal government called this plant Marijuana before they called it Hemp. And they DID call it Hemp. A few times, the latest time in the Farm Bill just signed into law.

Because of that term, I will hold my breath every morning and hope Bug opens his eyes.

Because yesterday, not only did I meet Mr. I-really-am-helping-you-by-helping-me-build-my-resume, but I met Marilyn. She is a mother to two Daughters that were killed by epilepsy. SHE is speaking for me. SHE gets it. And until the aforementioned man sits by his son's bedside and holds his hand while his heart beats 35 times a minute and he only takes 8 breaths in that same minute, until THEN, he does NOT understand anything about this battle and he DOES NOT speak for me, his very presence insults me and drives a nail into Bug's coffin. THAT is how he is really 'helping' me. By taking away any rights I had in making the decision for his well being.

Here's how you can send the message to Utah Lawmakers:

Like the FB Page - Hope 4 Children With Epilepsy
Go to the website: http://hope4childrenwithepilepsy.com/ and Click on How to Help.

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What a Seizure looks like (Graphic Content Included)

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Seizure Tracker.com

Seizure Tracker.com
Free online tools to provide people living with epilepsy and their doctors with a better understanding of the relationship between seizure activity and anti-epileptic medication dosages. Reports generated on SeizureTracker.com include detail graphing capabilities and are easily sharable with caregivers.

Diamond Potential Awareness Award

Diamond Potential Awareness Award
Thank you Holly at Diamond Potential for this award. Awareness leads to understanding and acceptance. And let's face it, we all need to feel accepted for who we are. The battle has just begun!

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