Tag Archives: medical marijuana

Current Events, Georgia, Medical Marijuana

Why is Sen. Ben Watson turning his back on Georgia’s cannabis patients?

January 17, 2017 Rebecca Gaunt Leave a comment

Let’s start with the TL;DR. If you read no further, check out this video created by a supporter.

I’m over it. My enthusiasm and January gung ho attitude of years past are long gone. 2017 is the fourth legislative session in which we will continue to fight for medical cannabis in Georgia. I’ll be honest. Before my son’s seizures and getting involved in cannabis advocacy, I didn’t pay much attention to state politics. Now that I do, the corruption and hypocrisy constantly makes me sick.

This year is already shaping up to be the same old garbage. The support we have comes from the House, while the Senate schemes to screw over sick people. Some names are no surprise. Sen. Renee Unterman (R, Buford) has been at it since this all began, so when Senate Bill 16 dropped, a bill that aims to lower the amount of THC permitted in Georgia from 5% to 3%, taking away options from patients, the only surprise to me was that she was a co-sponsor, rather than the lead.

The lead sponsor still came as a bit of a surprise, though. Doctor and Senator Ben Watson (R, Savannah) was a representative when all this started. He was very supportive of the original bills introduced by Allen Peake. He was even interviewed in his medical office, wearing his white coat, for the documentary Growing Hope: Georgia’s Fight for Cannabis Oil. In fact, check this video out at the 2:08 mark. (Side note: That’s my adorable kiddo at 2:02).

Yes, you heard him right. He said, “To say that marijuana, or THC, or cannabidiol has no medicinal value, I think, is just immoral.”

And yet, now he leads the charge to decrease the amount of THC permitted by people who hold a Georgia cannabis card? It’s not enough that the Governor has used the Senate to block cultivation and families have to travel out-of-state to get the higher THC products, now he wants to take away their rights to possess and use it in the state of Georgia?

Sebastien Cotte is father to Jagger who has mitochondrial disease, and Sebastien has been a huge advocate from the start. He has already been down to the Gold Dome and here is part of his Facebook post about his first day of advocacy in 2017. This was his account of a conversation he had with Watson.

Ummm… Georgia has an opioid epidemic going on. Are you being serious right now, Senator?

Oh, by the way, the Georgia senate has also passed a law limiting the number of opioid treatment clinics while they set up a committee to investigate why Georgia has the largest number of clinics in the region.

Katie McKoy, a fellow special needs mom of three, dug these up for me within five minutes of my posting on Facebook about Sebastien’s conversation. Let’s stroll down memory lane and remember when we had Watson’s support.

http://news.wabe.org/post/doctors-can-sign-patients-medical-marijuana-registry

https://www.savannahbusinessjournal.com/news-categories/featured-columnists/4746-apr-21-columnist-state-senator-ben-watson-state-house-report-wrap-up.html

http://gareport.com/story/2015/03/24/senate-passes-medical-marijuana-bill/

So what changed? He supported us in the House of Representatives, where the powers that be are behind us. But then he moves to the Senate, where Casey Cagle and Renee Unterman routinely try to stick it to sick people, likely at the behest of Governor Nathan Deal (who has proven that he’s only interested in photo ops with sick kids, not actually helping them) and suddenly he’s taking the lead on moving Georgia’s very limited program backward.

Five out of six of the senators who signed as sponsors of this new bill previously voted to pass our current (thoroughly gutted by the senate and governor) medical cannabis bill. Why wasn’t that gut job enough? Now that Rep. Allen Peake is introducing two new bills, one to expand the protected medical conditions, and another to put medical cannabis on the ballot for citizens to decide, I guess the senate needed leverage to shut those down. It’s sick. Nothing but games for these elected individuals. And FYI, whereas Peake’s bill adds several medical conditions to be permitted cannabis use, the senate is only adding autism.

The sponsors of SB 16 are:

Ben Watson (R, Savannah, District 1) 404-656-7880 ben.watson@senate.ga.gov

Renee Unterman (R, Buford, District 45) 404-463-1368 renee.unterman@senate.ga.gov (Votes in favor, just tries to strangle it behind the scenes).

In 2014, she admitted to WSB’s Lori Geary she was holding the bill hostage until her bill was heard.She also said, “These parents don’t understand how the General Assembly works but this building is nothing but politics.”

Francis Millar (R, Dunwoody, District 40) 404-463-2260 francis.millar@senate.ga.gov

2014:

fullsizerender

2016:

fullsizerender

Greg Kirk (R, Americus, District 13) 404-463-5258 greg.kirk@senate.ga.gov (When in-state cultivation was proposed said he wasn’t sure we should go down that road).

Nan Orrock (D, Atlanta, District 36) 404-463-8054 nan.orrock@senate.ga.gov (Has been vocally supportive on the floor, so I’m not sure why she’s co-sponsoring this).

Chuck Hufstetler (R, Rome, District 52) 404-656-0034 chuck.hufstetler@senate.ga.gov (Hufstetler is the only sponsor who has never voted in favor of medical cannabis. He likens Colorado to the “Wild West.” He’d feel better if the FDA approved it — the same FDA that approved pure hydrocodone, an opioid five to 10 times the strength of Vicodin).

Medical Marijuana, Parenting, Tuberous Sclerosis

I disappeared because of weed.

April 11, 2016 Rebecca Gaunt 3 Comments

Shameless clickbait title, but it’s technically true.

There are actually two major reasons I’ve been pretty quiet on the blog for the past year. 1. Burnout. I think I just hit a wall talking about TSC and I completely ran out of motivation. 2. Even when I did feel like posting I couldn’t talk about one of the most significant aspects of what was going on with Connor, which was that he was enrolled in an Epidiolex trial. I was not allowed to discuss it online while in the study.

In Venice, FL to visit Grandma Judy and Grandpa John.

I’m still dealing with intermittent motivation, but the other issue has been resolved.

Connor was fortunate to be included in an Epidolex trial last year by his neurologist. We were shocked to get in when so many were turned down. Epidiolex is manufactured by GW Pharma by extracting CBD from the cannabis plant. Unsurprisingly, this drug is pretty controversial in the cannabis world. Most people who are using medical marijuana or in the cannabis world are not thrilled with a pharmaceutical company getting involved. I completely understand this, feel similarly and get why this is problematic, nonetheless, obtaining regular cannabis in every state was/is an issue and we were accepted around the time some companies were finally able to use a federal hemp law to start shipping cannabis oil with THC levels under 1 percent. It was still the same stuff that used to be illegal; they were just able to get it reclassified as hemp rather than cannabis because of the low THC levels. Right after we started, Georgia finally passed an immunity law protecting people for having certain types of medical cannabis for certain conditions if your doctor would sign off and you registered for a card from the state. So the timing was weird. All that time with nothing, and then both options fell into our laps at almost the same time. We decided to try Epidiolex as it would present no legal issues with travel and other logistics (and I know low THC oil under 1 percent is in a grey area and theoretically okay in any state, but for those of us in Nathan Deal country and other states run by people with heads up their asses, nothing is guaranteed. For example, we aren’t allowed to administer the oil in the hospital without the card).

Meeting a manatee at Mote Marine in Sarasota.

It was utterly pathetic to learn just how many parents were ready to attack other parents for making the decision to enroll in studies. Parents that seemed to forget that not so long ago, pharmaceuticals were their only option, too. So for those of you that feel the incessant need in the various cannabis “support” groups to do nothing but viciously attack everyone who isn’t using the strain you approve of, you can seriously kiss my ass. There is a huge difference between explaining why you feel one type is preferable and making a parent who is just asking questions in order to learn feel like an idiot because you are on a power trip. At any rate, as you’ve likely guessed, we are no longer in the study.

The first five months were fantastic. We went from 2-3 seizures a day to up to 12 days seizure-free at a time. His cognitive skills improved, as did his physical skills. He learned how to use picture cards around the house to tell us what he wanted in a day. Unfortunately, we had to take most of them down after a few weeks when he began to take pleasure in making us jump just because he could. He went from using them effectively to thinking it was funny just to make us do stuff. He also started tackling hills on our walks like it was nobody’s business. Unfortunately, in mid-July, things went to hell. He was worse than he’d ever been and it wasn’t even that his typical seizures returned, so much as he seemed to be having a lot of subclinical activity and was a blob on the couch. He’d fall all the time and could barely walk. It was a nightmare 2.5 months. This contributed to my lack of motivation on this blog and I also fell off my other project, which I plan to get back to soon. Since I was still following many cannabis groups to see how people were using whole plant oils made in legal states, I came to the conclusion that his CBD dose was too high, and as soon as we lowered it, he began to improve. Things went okay for a couple more months, but when we lost control again, we decided to leave the trial and start Haleigh’s Hope, which we order from Colorado. It’s made by Jason Cranford of the Flowering Hope Foundation. We chose it because we know several people in Georgia having success with it, including Haleigh Cox for whom it is named.

Right off the bat with the switch, whatever subclinical activity might have been going on started getting better. He was walking again within a week. The situation was much improved from months of being so floppy he couldn’t function and going to school many days in his chair. Seizures in general have still been a bit of a roller coaster, though not to the degree that he’s unfunctional, but the issue we are having appears to be that since he just started school, he’s catching every germ that comes his way. The slightest sniffly nose means lots of seizures, usually starting days before symptoms even show up. It has been very frustrating. However, when we are able to keep him healthy for a couple weeks at a time, he does very well. Now that we are sliding into spring, I’m hoping things will even out and we will see sustained seizure reduction.

But can I just tell you about his eye contact? That has become phenomenal since starting HH. Sometimes I feel like he’s practically challenging me to a staring contest. After a couple months, it started to dawn on me that his stimming had decreased as well.

I have high hopes for the incoming warm weather.

I mentioned in my last post that just before I headed off to a blogging conference, Connor and Chris were getting sick. I returned home to Connor still exhibiting cold symptoms, and Chris the same. Though when Chris started having hot and cold flashes, I became suspicious that something else was at play. Connor slowly seemed to get worse and we celebrated his fourth birthday by having to give him two Diastat doses in one day, 12 hours apart for the first time ever. The next day he spiked a fever and had quit eating and drinking so we went to the ER where he was diagnosed with the flu. An IV perked him up to his old self so we went home, but he reverted the next day and we were admitted from Wednesday-Sunday. He developed pneumonia on top of the flu and almost ended up in ICU on Friday when he couldn’t keep his oxygen levels up. Thankfully, the next day he began to recover.

So here’s to hoping we can make it to and through summer vacation without any further drama!

Current Events, Georgia, Medical Marijuana

Georgia Medical Cannabis Commission Votes Against Recommending In-State Cultivation

December 9, 2015 Rebecca Gaunt Leave a comment

I’m gonna keep this short and sweet. For some background you can read this if you need it. Today the Georgia Medical Cannabis Commission met to decide on the final recommendations for the state and the medical cannabis program. The vote was 11-5 against recommending in-state cultivation, which would keep medicine more affordable for patients and not force them to break federal law obtaining meds.

A recent poll found that 84 percent of Georgians support expansion of the law and in-state grow.

This is the breakdown of the vote. Please note which side most of the doctors are on versus lackeys for Governor Deal, who plans to block expansion.

Yes:
Rep. Allen Peake
Dr. Mandy Reece (pharmacist)
Dr. Cynthia Wetmore (oncologist and head of research for Emory and Children’s Healthcare)
Dr. Yong Park (pediatric neurologist)
Dr. Mark Murphy (gastroenterologist)
No:
Dr. Alice House (head of state medical board)
Brian Rickman (district attorney who was recent appointed judge by Gov Deal)
Dr. Brenda Fitzgerald (commissioner of dept of public health)
Senator Butch Miller (floor leader for Gov Deal)
Rep. Katie Dempsey (Rome)
Ryan Teague (exec counsel to Gov Deal)
Chief Stacey Cotton (police)
Sheriff Gary Gulledge
Rick Allen (Director of GA Drugs and Narcotics)
Vernon Keenan (head of GBI)
Gary Black via proxy vote (commissioner of agriculture).

I’d also like to thank Pastor Mike Griffin, head of the Georgia Baptist Convention who spoke at the hearing and said that although he has prayed with families who need this healing, it should not be passed. Basically his fear of recreational use (which is not on the table) is more important than the welfare of sick people. He can be reached at mgriffin@gabaptist.org.

Yep. Legislators and law enforcement are apparently more suited to making medical decisions than doctors and patients. Read it and weep, Georgia. No seriously, you should weep. This state has serious issues.

They used the federal government as an excuse. Georgia. Does Georgia have a track record of bowing to the federal government? Apparently, only when it suits them.

There will still be legislation introduced to try and expand the program to include more conditions and cultivation, but overcoming dirty Georgia politics to make it happen is not going to be easy.

Governor Nathan Deal
Phone: 404-656-1776
Email: georgia.governor@gov.state.ga.us

Find your state representatives here:

http://openstates.org/find_your_legislator/

Current Events, Georgia, Medical Marijuana, Parenting

Governor Deal plans to block medical cannabis expansion.

December 3, 2015 Rebecca Gaunt 5 Comments

I’m experiencing a serious feeling of deja vu. Except last year Governor Nathan Deal waited until after Christmas to drop the bomb on the sick and suffering of Georgia, along with their families. Happy holidays, citizens. You don’t matter.

Let’s do a brief recap. In early 2014, a parent lobby rose up, with the help of Rep. Allen Peake of Macon, to try and pass HB 885/Haleigh’s Hope Act to help people with epilepsy access cannabis oil. It was a very limited law, but by the time it hit the floor on the final day of session, it had been whittled down to nothing but immunity for possession of the oil. Political games were played, namely by Sen. Renee Unterman of Buford and Lt. Gov. Casey Cagle (who has his sights set on the Governor’s seat), and the bill died, much to the devastation of the families. As the clock ticked toward midnight, several families ran to Deal’s office to beg him to intervene, to demand that the bill get a vote. He wouldn’t come out of his office. More families moved to Colorado in desperation. And three children I knew through this effort would pass away as the fight continued.

Over the course of the year, Peake led a commission to explore the idea further and how to make it work in Georgia. They concluded in December of 2014. Everyone was excited at the prospect of a bill that would include more conditions and allow a higher ratio of THC to CBD (necessary for many people for whom CBD alone doesn’t cut it). It was also supposed to allow cultivation and growth in the state of Georgia as bringing it over state lines is federally illegal. Before the session even started, Deal made it clear growing was off the table. It was another devastating blow, however, HB 1 did pass with several eligible conditions. Residents could apply for a card that allowed them to possess cannabis oil with up to 5 percent THC.

Let me quickly say, I am for full medical marijuana. Legislators should not be able to dictate what conditions or stages of disease are eligible. They are NOT doctors, except in rare instances. But this is the sad hand we are dealt in Georgia. Too many elected officials that think it is their job to parent rather than represent the will of the people, who are largely in favor of medical cannabis. The goal for 2016 was to hopefully expand conditions and allow growing so that federal law doesn’t have to be broken to obtain it.

The signing of HB1 in 2015 was quite the production with the Governor’s office. He even shed (crocodile) tears as he signed the bill to help the families his staff strategically placed around him for the camera op. It was a performance worthy of an Academy Award.

Over the course of the past year, taxpayers have sponsored another committee to explore options for growing in Georgia. They have not completed their work or presented the final findings to Deal, however, yesterday he came out and said he will not support growing in 2016 either, even though the whole point of the committee he appointed was to make that happen.

He says law enforcement doesn’t want it. Well, last time I checked, that isn’t the branch of government that writes the laws.

He also says that the 300 people who have registered aren’t enough to be worth the cost of the program. Hear that, fellow card holders? Our loved ones aren’t worth it. He fails to recognize that many people can’t register because the restricted legislation doesn’t include their conditions, or if it does, they have to be end stage (yeah, you aren’t dying enough yet), and many need more THC than is allowed by the current law. Several patients are also encountering the issue of their doctor refusing to sign off simply because they oppose the idea or lack education about how it can benefit various conditions.

I find it funny that he considers the cost/benefit ratio not good enough to have in-state grow, but he supported pharmaceutical trials that cost the state an extraordinary amount of money, and have taken forever to benefit anyone at all.

He never intended to listen to either committee. But he was happy to waste your tax money putting on a show of fake compassion.

There are two things I really hate about epilepsy. The first is obviously what it has done and continues to do to my child, even though he has shown extraordinary improvement on CBD oil.

The second is how it has left me feeling about my state and my country. Getting involved in corrupt politics has been so incredibly disheartening. I was happier in the dark, but there is no going back. I just hope there is a light at the end of the tunnel in the form of a majority that can override Deal’s veto. But that road looks a lot like a Georgia road in an episode of The Walking Dead. We need everyone to speak up. Please call and email your state senators, representatives and, of course, the governor. Let him know you are tired of him ignoring the will of the people.

This site will help you find out who your state officials are:

http://openstates.org/find_your_legislator/

Governor Deal, this is just one the many faces you are hurting. Look at him. He is a person. He is a Georgia resident. He is loved. Now do your job.

For more on what happened last year, read this.

Georgia, Medical Marijuana

Georgia Rally for In-State Cultivation of Medical Cannabis

February 2, 2015 Rebecca Gaunt Leave a comment

As I previously posted, Gov. Deal stripped HB1 of the growing option, leaving it as immunity only. There will be a rally at the Capitol tomorrow to demonstrate the support for in-state growing. Please attend to show your support.

There are currently 17 medical conditions included in the bill. However, the Georgia Sheriffs’ Association and District Attorneys’ Association do not support the expansion to other diagnoses beyond epilepsy. Please contact your local sheriff and DA.

Hope to see you tomorrow!

Georgia, Medical Marijuana

Deal. Real. Before pharmaceutical companies I kneel.

January 11, 2015 Rebecca Gaunt 6 Comments

There is a very misleading headline floating around that the governor is supporting a bill for medical cannabis. It is not true. Yesterday Governor Nathan Deal dropped the bomb that he will veto a medical cannabis bill with in-state growing. He will, however, sign off on HB1 immediately if it is stripped to immunity only. What this means is that he wants sick people to travel to legal states, obtain cannabis oil that falls within the parameters described in HB1, and break federal law to bring it home. This is what he considers helping the people. Frankly, I’m impressed his hand isn’t too cramped up to sign any bills with all the patting he’s been doing on his own back for talking to GW Pharma about Epidiolex trials, the pharmaceutical version of CBD from the cannabis plant. (Isn’t it funny how pharmaceutical companies can find a medicinal use for a plant that is classified by the government as having none?)

Here’s the thing. Last year Rep. Allen Peake presented HB 885, also known as Haleigh’s Hope for Haleigh Cox. It started out with a plan for growing but got stripped in committee. I won’t rehash the whole ordeal again, but by the end it was also just an immunity bill with no way for people to obtain cannabis in Georgia. It had the votes, but Senator Renee Unterman killed it by attaching another bill that she knew good and well the House wouldn’t hear. Several families were down at the Capitol as the clock counted down to midnight on the last day. They went to Deal’s office to beg him to intervene, but he refused to come out and meet with them. He has said to reporters since then that he has met with the families. Most of the families would love to know who those families were and when because we’ve been trying to figure it out. He could have encouraged an immunity bill through last year but he chose to hide in his office.

He has known all along that there was a plan and a need for growing in the state. By agreeing to immunity only, he is encouraging families to break federal law by transporting it back to Georgia. You can be charged if caught driving through an illegal state or by TSA when flying. Not to mention the expense and challenge of people with serious medical conditions needing to leave the state to obtain it.

Throughout the 2014 election he was asked where he stood. He was vague and always pointed to what a great job he was doing talking to GW Pharma about bringing Epidiolex trials to Georgia. He was quiet as Rep. Peake led a committee during the months between sessions to create the legislation for HB1. He waited until this past Friday to finally be straight about the fact that he has no interest in genuinely helping the people in Georgia that could benefit. For him to not veto HB1, it must be stripped. He claims to want to appoint a committee to look into growing in 2016. Well, what have you been doing for the past year, Gov. Deal? And if he didn’t think Peake’s committee was doing a suitable job, why didn’t he step in? Because that wasn’t the issue. Deal is playing a different game. Meanwhile, people are sick and dying and many aren’t finding relief from traditional pharmaceuticals.

Sen. Curt Thompson has also announced his plans for SB7. It is a more comprehensive plan that is well-received by those who want to see a medical marijuana program in Georgia, but it isn’t expected to have a shot given that it allows so much more than Georgia legislators are comfortable with and is being introduced by a Democrat in a good ole boy Republican legislature.

But what can we expect from Deal, a man who secretively met last year with Sheldon Adelson? Adelson funded 85 percent of the campaign against Amendment 2 in Florida, which would have brought a comprehensive medical marijuana plan to the Sunshine state had it passed. In an amusing twist, Las Vegas casino king Adelson’s other pet project, besides keeping sick people from having more options, is blocking online gambling because “Internet betting could harm children and other vulnerable people.”

The AJC recently conducted a poll that showed 84 percent of Georgians support medical cannabis.

Want to share your thoughts on this subject with Deal? Give his office a call at 404-656-1776.

Connor gets to join an Epidiolex trial!

November 26, 2014 Rebecca Gaunt 2 Comments

We’ve been waiting months for confirmation that Connor can take part in a compassionate use trial for Epidiolex. His doctor was on board, but had to submit paperwork and jump hurdles due to the absurd schedule 1 classification by the DEA. Epidiolex is a marijuana-derived pharmaceutical. It contains CBD, and no THC. As we are still fighting for medical cannabis legislation here in Georgia, Chris and I desperately wanted this legal opportunity for Connor.

I actually cried when I got the confirmation. I had no idea how much of a weight this was on my shoulders until that moment because I hardly ever cry anymore. People who have known me for a long time might think, yeah right. I used to be Queen Crybaby, crying over the stupidest little things all the time. But now, on the rare occasions I do cry, it is still over something stupid — like the death of a favorite character on Walking Dead (and unlike some people who like to spoil things instantaneously on Facebook, I STILL won’t name names here for those who are playing catch up on Netflix–oops, veered off on a pet peeve tangent. Suffice to say, the instant someone croaks, you don’t need to flippin’ post it). But I never cry over important things that I probably should. Sometimes it kind of weirds me out and I wonder if something is wrong with me. At any rate, I knew tears were a sign of how important this is to me. As you can see, I may not be able to display emotion when it comes to Connor and TSC, but I’ll sob and punch you in the face over The Walking Dead.

Epidiolex trials are exceptionally difficult to get into, and I don’t know how we got so lucky. I know so many who have tried and haven’t been accepted. This also doesn’t change the need for legislation. Epidiolex is one formulation. It is not the same thing that kids like Charlotte Figi or Haleigh Cox are using out in Colorado. They are on whole plant strains of high-CBD, low-THC oils called Charlotte’s Web and Haleigh’s Hope. Some kids are benefitting from THCa. Others are supplementing with THC when the ratios in the oils don’t hit the spot for seizure control. And it will still be years before Epidiolex is available to the general public. What I’m saying is, Epidiolex isn’t one size fits all. But we hope it will fit Connor.

We aren’t sure on the start date yet. Before he can receive his first dose, he’s required to have a screening appointment. Being the holidays, the next available appointment isn’t until Jan. 6. I was rather dismayed by that as you must keep track of the seizures for a month after that appointment, and that meant he can’t start the med until February. But he happens to have a follow up appointment on the calendar already in early December. The study coordinator is looking into whether that slot will allow enough time for the screening. That would put him on the med by early January. Fingers crossed it’s sooner rather than later.

Medical Marijuana, Reblogs

CONNOR

November 20, 2014 Rebecca Gaunt Leave a comment

Medical Marijuana

Thanks, Sen. Renee Unterman and Lt. Gov. Casey Cagle!

October 22, 2014 Rebecca Gaunt Leave a comment

My heart is going a mile a minute and I am trying not to go into a rage. The one thing that made it okay that HB 885 didn’t pass in its final form last session was that by then it had been stripped to an immunity bill. Not a lot of good when you can’t obtain it in your state. But Realm of Caring has decided not to move forward to with their plans to ship Charlotte’s Web UNLESS the state has already passed AT LEAST an immunity bill due to the closer scrutiny they have endured since rolling out this plan. GEORGIA FAMILIES THAT THOUGHT THEY WERE GOING TO BE ABLE TO GET IT SHIPPED AS EARLY AS NEXT MONTH NOW CAN’T. This is thanks to the despicable actions of SENATOR RENEE UNTERMAN of Buford (who is on the current medical cannabis committee and typically appears to be asleep in meetings–IF she bothers to stay for the whole thing) and LT. GOV. CASEY CAGLE who thought it would be cute to smirk at the grieving families as the session closed without it being allowed to go to a vote at his discretion. Please share the word of what they have done. Georgia families now have to wait for the next session to get a law that will allow them to receive it, when every state around us already can.

From RoC:

“This change will not impact availability for those of you who live in states with clearly defined statutes that allow individuals to possess CBD or low THC, regardless of the specific means by which these products are acquired. For everyone else: we will be seeking clarification from the appropriate agencies in all 50 states in order to determine the legal accessibility and risks of possession of CBD products. To be clear, as soon as we have confirmation from your state authorities that you will be exempt from prosecution, we will ship to you.”

So let them know how you feel:

Sen. Renee Unterman:

Renee.Unterman@senate.ga.gov

121-H State Capitol
Atlanta, GA 30334
Phone: (404) 463-1368
Fax: (404) 651-6767

Lt. Gov. Casey Cagle

e-mail here.

240 State Capitol
Atlanta, GA 30334
Phone: (404) 656-5030
Fax: (404) 656-6739

Medical Marijuana, Parenting, Tuberous Sclerosis

You can get Epidiolex in a month if your definition of a month is 210 days to years.

October 9, 2014 Rebecca Gaunt 2 Comments

Connor had a 48-hour VEEG a few weeks ago. It was awesome. Instead of waiting weeks and weeks to get into CHOA, we were given the option to use a company that comes to your house and hooks everything up. No hospital! God, it was beautiful. We had received the basic results, but recently had an appointment to discuss it more in depth with his neuro. I’ve been confused in documenting his seizures recently because they often have elements of his typical complex-partials, as well as his tonic-clonics. The EEG confirmed that his CPS (which are in one area of the brain), then generalize to the rest of the brain resulting in clonic seizures. He has a couple hot spots and it seems like every EEG seems to indicates a tradeoff in which is doing the dirty work. This time they all started in the right frontal lobe in the spot where he had surgery when he was four months old. Greeeeaaat.

This is not to say the surgery was not done well or wasn’t successful. It made a huge difference in reducing his seizure activity. That removed tuber was the reason Connor spent 37 days in NICU at birth. But sometimes the area left that surrounded the tuber can still trigger activity. This means a second surgery to remove more of that area is an option. But the doctor already knew we weren’t interested in exploring that route, not before we try medical cannabis. Connor is currently being considered for a compassionate use trial of Epidiolex, the GW pharmaceutical using extracted CBD.

We’ve been somewhat quiet about that because we already got disappointed once. Despite Rep. Sharon Cooper and Sue Rusche of National Families in Action swearing up and down during the last Georgia legislative session that we could all get into the clinical trials WITHIN A MONTH! JUST ASK YOUR DOCTOR! it was confirmed quickly what the families already knew. That’s. Bull. Shit.

Many families never had a shot at the trials being conducted by GW. They are focusing on Dravet and LGS. Plus, there is a lot of exclusionary criteria, such as having additional diagnoses. Many tried. Many were told no. One of those children, whose mom was assured she could get it, has since tragically passed away due to a seizure. He didn’t qualify.

Connor only has a shot because there happens to be a compassionate use trial here that isn’t limited to those two diagnoses. But it is very small, very expensive for the doctor and very complicated for a doctor to take part in due to the schedule 1 status of cannabis. So, sure, you can ask your doctor to look into this, but don’t hold your breath. However, the first time we thought we could be included, we found out Connor was excluded by GW because of his age. His doctor has since submitted paperwork to expand the age requirement and we are holding our breath for it to be approved. Sooooo, a month? Let’s see, the legislative session ended in March, so it has been at least seven since we were all told a month. And Connor is damn lucky he even has a shot at taking a part in such a small trial. Cross your fingers for him and us. Everyone else can just move to a legal state, break the law or wait the years it will take for Epidiolex to hit the market (and then hope that formulation is the one that will actually help).

Realm of Caring is also about to start shipping Charlotte’s Web, the the high CBD oil, made famous by CNN’s Weed with Sanjay Gupta. So the CBD options are slowly and fantastically coming our way, but should Connor be one of the cases that requires a different ratio of THC, we will either need to move to a legal state or hope Georgia can pass legislation in 2015 that will let us get what we need. The comfort level with CBD has skyrocketed nationwide, but THC is still demonized despite the fact that it is needed to treat many medical conditions. For now, we are hopeful that Connor will be one of the patients that responds well to CBD without the need for tweaking the ratio. It also remains to be seen how shipping the oil will play out due to the legal gray areas, especially for people in states with no legislation on the books. Certain politicians and people with authority think we should all settle for their word that they won’t prosecute us here. But tell that to Angela Brown in Minnesota who was recently arrested for giving her son CBD oil.

We’ll just be gnawing our fingernails, waiting to hear about the trial. Connor’s been having more seizures at night. His Emfit monitor was malfunctioning the other night (we were advised to adjust some settings which seems to be doing the trick), and now that I’m used to having a monitor that will alert us to convulsive seizures, I couldn’t sleep knowing it wasn’t on. I tried to sleep with Connor in the guest bed, but moving him woke him up and for the next hour and 15 minutes he appeared to be on speed. We played several rounds of “Got Your Nose” Scarface style –him grabbing mine, not the other way around. The bed and my head also made for equally sufficient trampolines. I finally gave up and had to put him back in the crib where he entertained himself for at least another hour. Life with epilepsy, ya’ll.

If you are interested in putting yourself on the wait list for Charlotte’s Web, go here.

Mixed Up Mommy