Tag Archives: cannabis oil

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

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.

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

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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.

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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:

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2016:

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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).

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I disappeared because of weed.

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.
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.
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.

Captivated by the waves!
Captivated by the waves!

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.

At Touch-A-Truck in Kennesaw.
At Touch-A-Truck in Kennesaw.

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.

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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.

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Feeling better finally!
Feeling better finally!

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

I never thought I would be writing this story. I never thought we would be living it.

Second Annual “Blogging for TSC Awareness Month” Day 25

by guest blogger Becky Ruppe  (Cumming, Georgia)


photoI will start off by saying how hard it is to sum up our journey as it is a never-ending battle and the past seven months seem like years. Our story with Tuberous Sclerosis Complex 2 begins with twins, after many times trying to start a family and after trying everything; as soon as we stopped trying, we were blessed with twins. We were so happy, but we would soon find out; everything was not as it seemed. As time progressed in the pregnancy, his twin sister passed in the womb from another rare disorder, Trisomy 13. Not long after all that, on ultrasound, the doctors found tumors in our son Ben’s heart. We were devastated by this news and still recovering the loss of his sister.  That day was tough and the first time we had ever heard the words Tuberous Sclerosis. I remember thinking there is no way we could have two rare things, but as time progressed more tumors popped up on ultrasound and we were told our son Ben had an 80% chance of having TSC. He had more than seven tumors in his heart and one that should have been blocking his outflow; it kept growing and growing. It was honestly a miracle that he was surviving, as the one blocking his flow was so large. We found every day was a challenge emotionally and we had nothing left to do but to pray for a miracle that we wouldn’t have to do an emergency c-section to try to save his life with open heart surgery to remove it.

We had fetal MRIs to look for tumors in his brain, but nothing showed up. Finally on October 23 we gave birth by c-section to our son James Benjamin Ken Ruppe, he went straight to the Nicu when born, he was not eating and was given a feeding tube and was given medicine to keep his blood flowing through his backup channel in his heart. We stayed hopeful, but by day three they did an MRI and we were walked into this tiny room and given the findings of his MRI. I remember that walk like it was yesterday, I had tears before we even made it to the door. They found multiple tubers and nodules in his brain and was given the actual diagnosis of TSC. It was heart wrenching, the hospital made it seem as though it was a death sentence, we had him baptized that night. We were clueless what was going to happen, would he need heart or brain surgery, would the medicine continue working, would he start having seizures, so many questions not one doctor could answer. Then two days later; our son Ben was able to come home. We followed up with three doctors the week we came home. It was overwhelming, scary and honestly I don’t know how we made it through all that.

Since giving birth, most of his tumors have reduced in size in his heart and he is currently in therapy once a week for muscle loss due to his TSC. He started photo-1having seizures New Year’s Eve and ironically those seizures did not show up on his EEG. He has had several EEGs,  and the seizures have become more frequent. About two months ago we were told his EEG reflected localization epilepsy with focal onset seizures. It has been really horrible to watch him go through all this. Every EEG brings tears for our son.

Thankfully, when we found out about the possible diagnosis of TSC, I reached out to the Tuberous Sclerosis Alliance and have met a really great support group. We also enrolled our Ben into two studies that we travel to Boston for.

Most recently we noticed Ben started to drop his head and we called his neurologist and went into the hospital for a VEEG.  Within an hour and half of him being hooked up, the doctor came in to tell us he was in fact having infantile spasms. The funny thing was that they give you this button to push every time he has an episode. I pushed the button twice during that hour and half. What I found out later, was that he had multiple spasms and clusters and other seizures that I did not even recognize. I will say it was very frustrating that nobody came in and showed me on the video — this is a spasm, this is a seizure. I was told by the Children’s Hospital in Atlanta that they do not have the medication Sabril, which I understand is the best med of choice to treat Infantile Spasms. This to me was a load of crap. How can you not have this medicine and why did we have to wait to get our son the best treatment when from day one we were told that Infantile Spasms can be deadly?

They said I had to wait and get it from his doctor’s office and they sent me home with Klonopin. He was already taking Keppra for complex partial seizures.  Thankfully, his local neurologist Dr. Flamini got us the meds in two days, but in my mind it was still unacceptable to be sent home without the best meds for his treatment.

Since coming home from the hospital Ben is having probably close to 70 + seizures a day.

We have increased some and lowered others of the meds he is taking. We are currently on day 4 and waiting for a change. His spasms have changed into something completely different, with the occasional head drop.  Now looking back, when Ben was 8 weeks old, he was extremely colicky. We took multiple videos and were always told it was nothing and that he was fine, but I know now, judging from his current colicky status (Infantile Spasms) that he was in fact having IS and or some seizure activity as a baby and because his EEG was not showing it and based on opinions of doctors, we delayed treatment. I also know that his infantile spasms are not the normal spasms you would see. They are not as defined and often rotate from one side to the other.  We also were told recently that he has multiregional epilepsy and that he is not the best candidate for surgery.

If I could go back, I would have started medication sooner, because who can help but wonder what damage has been done.  In five days, my son went from having excellent head control to having very little and he also went from being able to stand and put weight on both his legs to not being able to do that for more than a second.

This past Saturday we called 911, as Ben had a seizure that lasted over 20 minutes. The EMS came and they said his heartbeat was fast, but everything else was good and we just continued to watch him per his local doctor.  I am not sure how everyone else feels about giving your baby medications, but giving my Ben three medications twice a day is a struggle. It is hard… every time I have to mix it, I have to take a deep breath to get through it.

I will never give up on my Ben. My husband and I are in a constant struggle with acceptance, and no matter what people say, it is sad and it is hard. There is nothing that can describe watching your son, your sweet innocent baby boy, have seizure after seizure and all we can do is sit back, love him and watch. TSC is the worst pain in the world to us. We aren’t giving up, but we are giving in to the emotion that we are allowed to feel pure anger and a little helpless at times, as there are limits to what we can do for him — the rest is up to somebody else. I hate every second of every day that I have to watch him suffer.  Many will say that is not a way to live — nope, it is not — but it is our truth. We still check him to make sure he is breathing and we are still living and fighting and find massive amounts of joy in everything else our sweet Ben does — when he smiles and when he loves. Our relationship with TSC is completely unavoidable and that is what makes it suck and it is what it is.

Each day we face TSC, we face many challenges emotionally and financially and many sleepless nights. We want a cure so bad it hurts. You are never prepared for the what ifs. I never thought I would be writing this story. I never thought we would be living it. I never thought I would be giving our son three medications that make him totally not himself. I never thought I would be learning a whole new language. I thought I would be going somewhere completely different. I thought a lot of things. I have wanted to be a nurse my whole life, and I have wanted to be a mother my whole life. I thought so many times I would go to nursing school. I know now that that feeling of wanting all those things is now my reality, I got what I want and wouldn’t trade it for anything,  I am right where I am supposed to be. I thought having a child would be so different and that we would play normal people, but turns out we are, it’s just our normal day to day is just a little different than others.

I love every minute I have with my precious Ben, I love that I have been able to jump right in and take care of him. I love that I can make him smile. I love that my husband is such a great father and husband to me. I know that TSC affects us, but it also affects our friends and family, as they are constantly in this battle with us. We are thankful for all the support we have been given, by the TSC Alliance, the TS Mommy site, Dr. Flamini and all the doctors he sees.

photo-2We don’t know how the next year is going to go, we don’t know if he will stop breathing tomorrow from a seizure or if the next seizure will be the one that slows his development even more. Will he need brain surgery? Will his kidneys be affected? Will he be able to have children? Will he learn to walk and throw the ball? All the simple things in life; we are left wondering and hoping. We don’t know what kind of life he is going to lead yet. Will we as parents be able to afford the best treatment for him? Watching our son have seizures is something you can’t describe, there are no words. I do know that my son saved my life. If it was not for him, I am not sure I could have made it through the loss of his sister. So, now my husband and I are giving our life to him. I know now that his sister is in Heaven watching over Ben and our family and not a day goes by that I don’t think about how our life would be if we still had her with Ben, but I know now that that happened for a reason. Ben needed his extra Angel and she will take care of us and watch over our family.

We find great comfort with every second we have with him and every morning we wake up to his smile. The light at the end of our tunnel is holding onto hope that research in finding a cure for TSC 2 is continued and that one day there will be more options for treatment for our son and maybe soon medical Cannabis Oil will be legal in the state of Georgia, because after giving my son all of these  harsh medications, I have no doubt that I would choose that first before any of this stuff he is on currently.

My family is the best family in the world. We will never give up and we will fight every day.

Our story with TSC 2 will continue  and one day I hope we can look back on all these hard days and say, We showed you TSC… We showed you…

 

Medical Cannabis and Political Games

Guest post by Mixed Up Daddy

For those of you that have wondered, yes there is a Mixed Up Daddy that walks the path of life with Mixed Up Mommy.  Probably more astonishing to some (including my family and close friends), I even can write!  Although let me start by saying I don’t write nearly as well as my wife.

Also, before I get into the true reason of this post, let me just say how proud of my wife I am, not only for writing this blog and educating so many on TSC and our journey through it, but also for being an incredible wife and best friend to me, and of course the best mom ever to Connor (no offense to the other moms out there!).  I also want to thank the little man himself, Connor.  He is such an inspiration to me, and I only wish I could have a little bit of the strength and courage he shows every day.

Now on to the reason for my first foray into blogging — a certain state representative here in Georgia.  As I am sure you are all aware from reading Becky’s blog, there has been a push in 2014 to legalize medical cannabis oil in Georgia — oil that could potentially not only help with the quality of life for so many like Connor, but could potentially be lifesaving.  It goes without saying how wonderful it is to have State Representative Allen Peake of District 141 who was willing to champion this cause for so many on our side.  He did this knowing it was going to be a tough fight and one that could potentially end his political career.  It is refreshing having politicians who, even though they may lose their political career, are still willing to take on the hard issues because it is the right thing to do!  I applaud you sir!!!  I only wish we had more like you at every level of government.

But that isn’t the representative I came to write about.  I also didn’t come to write about my State Senator who, although he is in the state senate to represent myself and the rest of his constituents, never returns emails, voicemails, Twitter messages, stands you up for appointments, and doesn’t even show up for his own scheduled town hall meeting (and let me add this is not just my experience, but dozens of his constituents’ experiences).  Nor am I here to write about how wrong it is that our government (both at the federal and state levels) take off every other year from tackling the hard issues because “it is an election year”.  Again, there are some great politicians out there that don’t do this, but I am sick of hearing this. You are elected to represent us, each year and every year.  I am also not here to tackle the comment made on the floor of the Georgia House of Representatives during the debate on HB885 by a freshman politician that when he took office he was told by other politicians that freshmen congressmen and congresswomen should be seen and not heard.  Since when do those who elected a new member to represent them suddenly not have a voice?  To me this is nothing more than bullying of politicians by other politicians. Thankfully the above referenced representative did not listen to those politicians, but instead gave a great speech and represented those from his district. On a side note, don’t get me started on the all too common practice in politics of “the more you donate, the more you matter and get access.”  Maybe that is how I can get access to my state senator?

Okay, so maybe I got to a few items, just not in the detail I could have.

No, I am here to talk about, and give my opinion — no one else’s — on Georgia State Representative Sharon Cooper of District 43.  I did not know who Sharon Cooper was before this process as I do not live in her district and did not get involved in state politics. But after this process, oh wow!  Now I readily admit I am biased when it comes to the topic of cannabis oil, but my issue with Sharon Cooper isn’t so much on this topic, but the way she has conducted herself during this process, and I can only assume, how she conducts herself in general down at the Gold Dome (the Capital in Georgia is referred to as the Gold Dome).  I also will say that she voted for this bill twice — once in committee and once in the full House vote. But looks can be deceiving.  In my humble opinion she has actually been trying to kill the bill behind the scenes.  I will get to that in a moment.  Some though will say, “Why would she vote for the bill if she didn’t want it passed in reality?” Well that is where I question how she does things.  Based on parents who were in the House during the vote, she was one of the last to vote. Again it is just my opinion, but my guess is that she was seeing how the vote was going, and in “old school politician” mode, chose to vote for it as it isn’t easy to be a “no” vote when the vote is 171-4, but it is easy to hide as a “no” vote if the vote were say 104-71. (I know old school dirty politics, I was born and raised in Chicago, where that was invented).  No, an “old school politician” would vote for it (knowing that is what the public would see), and then behind the “closed doors” of the capitol try to kill the bill (luckily the doors of the capitol of Georgia are not as “closed” as she thinks).  My issue here is that she has a responsibility to her constituents to show them how she truly votes on the issues, not resort to the all too common politics of today of “I will do whatever I need to do to get reelected”.  I have no problem with my elected officials voting contrary to my opinion on issues, as there is no way we would see eye to eye on every issue.  We should not have to ask that they vote accurately though so we can actually make an informed decision during elections.  We deserve that much!

Now you may ask, “How was she trying to kill the bill?”  Behind the scenes at the Gold Dome she was passing out a flyer on the “Truths” (my wording) of HB885, yet there were several facts that were wrong on it.  I am not sure if she just got the facts wrong and didn’t do the research, or if she did this on purpose, but either way that is unconscionable, and although it is common in politics, has no place.  Let’s also not forget that her position on some items is ever changing.  Take Epidiolex (a pharmaceutical cannabis product that is currently going through FDA trials and shows some great promise) for example.  At her committee meeting there was testimony by a woman — a family values advocate, not a doctor  –who said Epidiolex could be here in Georgia in 30 days, yet there was also testimony by a respected neurologist (Connor’s doctor, and many of the other children that could benefit from cannabis oil) who said he was in the process of getting DEA approval to run an Epidiolex trail, but it was a long and arduous process.  So who does she back during the meeting? The non-doctor testimony — never mind the fact that it was a lie.  She would correct that in later speeches and comments though.  She could have also found out more about how it is such a long process by watching the show Weed 2 that recently aired on CNN and was done by Dr. Sanjay Gupta.  Of course this is the same congresswoman who called into question Dr. Gupta’s credibility during her committee meeting.  Never mind Dr. Gupta is a well respected neurosurgeon, assistant professor, and journalist.  She also cut off more than one parent during their testimony, including one that she would later reference in her speech on the House floor regarding medical cannabis, although twisting and misrepresenting his story to fit her ways.

Representative Cooper’s big idea on the subject is that we have an alternative FDA medicine — Epidiolex — at our disposal.  Unfortunately that medicine is not readily available and we have no idea when it will be (most likely years based on other FDA timelines).  Currently it is only in trials, very limited trials (we are talking 125 people, and based on trials that are trying to get up and running, at most maybe 2000 people, but probably less, in the future).  She also has said that Children’s Hospital of Atlanta has told her they are open to do studies on Epidiolex, yet when contacted, CHOA said they have no interest in doing a study on Epidiolex at this time. I have no idea why the parents are getting different information than Representative Cooper, but we certainly aren’t being told what she says she’s hearing (maybe “old school politics” again).  What do these parents and adults do in the meantime?  Also, let me point out that most patients have exhausted all available FDA-approved meds that are out there for their conditions.  Let me also mention that although I am sure there are some incredible people working for the FDA, let’s not forget that the top levels at the FDA are political appointees, and that big pharma is an incredibly powerful lobby and big contributors to political campaigns.  Let’s also not forget the side effects that come with the FDA-approved meds that are taken every day — possible vision damage, kidney failure and liver damage to name just a few.  Or that there have been FDA-approved drugs that have then been recalled.

I am digressing though. There are some incredible parents we have met along this journey that are a lot better at giving examples of her lies, and if they cannot get them published in the Atlanta paper, I am sure my wife will give you a forum to get your message out.  Since the Atlanta paper allowed an editorial by Sharon Cooper though, I certainly hope they give “us” a chance to get the truth out there.  Again, this is about her shady politics, though.  This is what the general public has grown sick of in America.  We expect our politicians to act in a better manner.  I only wish I lived in her district to run against her.  In Georgia though, we are sort of set-up where the common man can’t run.  We only pay our politicians less than $18,000 a year (no, I am in no way advocating for higher pay), so unfortunately unless you are a business owner, or independently wealthy, it is almost impossible to run as you can’t raise a family on that pay.  As great as my company is, and they have been incredible throughout our whole journey with TSC, I am pretty sure they are not going to let me take the first three months of the year off.  And how I would love to run against our state senator so that everyone in our district could be heard and represented.  I deserve to be heard and represented; we all deserve to be heard and represented!

Sharon Cooper was passing out the original in black to members of Congress. The red print reflects changes made by two of the parents so it could be passed out by HB885 supporters to set the record straight.
Sharon Cooper was passing out the original in black to members of Congress. The red print reflects changes made by two of the parents so it could be passed out by HB885 supporters to set the record straight.

The fight for medical cannabis in Georgia continues…

I am but a mere soul in the mud trying to help push the truck, but credit for the amazing momentum of the last few weeks goes to a group of parents at the steering wheel. I have had the pleasure of getting to know some of them if only online. For every e-mail I send or person I try to persuade, they have done 100x that with face-to-face meetings, contacts to the media and bringing legislators that were once wary over the line to full support.

Rep. Peake is working on legislation right now, convinced after meeting Haleigh Cox face-to-face in the hospital after she stopped breathing and had to be admitted.

Haleigh Cox with Rep. Peake
Haleigh Cox with Rep. Peake

Please also check out Kason Jiles’ story. Connor was once in that position, stuck in the NICU with dozens of seizures every day.

All of this has made realize how lucky we are. Connor’s seizures are not good and are certainly a factor in his physical and speech delays — and there is always the fear of SUDEP or status seizures, but some of these parents are literally trying to save their kids’ lives. Not long-term — I mean NOW. As in they face very immediate life and death issues–each day they wait is a life time. Where we have managed to get Connor down to roughly three clinical seizures a day, their kids are seizing constantly. They have exhausted traditional options. FDA-approved meds have FAILED, the ketogenic diet has FAILED, the VNS implant has FAILED, brain surgery has FAILED or is not an option. Next month we start Connor on the ketogenic diet. In many ways I feel like that is our last option. Sure there are more meds we could try, but we’ve already tried seven.

“Yet less than 1% of patients who failed to respond to three anti-seizure drug regimens achieved adequate seizure control on subsequent drug treatments even though some were treated with as many as nine different drugs or drug combinations.”

I am very optimistic about the diet. I’ve done some tweaking to his diet in preparation for the real thing and I really think it has helped. His seizures are mostly 30 seconds and under and now only seem to happen upon waking in the morning and at nap time. But keto may not stop them 100 percent or it may not work forever — not to mention the incredible difficulty and lack of nutrition on the diet. Connor deserves every possible option on the table. All of these kids do.

Many people remain locked in an image of bongs and rolling joints. This is not how children would take this medication. It is an oil that they would take under their tongue and with food. They don’t stumble around high. There are other forms as well, but that is the one I am most familiar with. No child is going to be smoking.

President Jerry Luquire of the Georgia Christian Coalition has spoken against us with the media and to his followers. A number of parents began to e-mail and comment on their Facebook page pleading to be heard. All of our (polite) comments were deleted from the page and several people were blocked from commenting further. This was one of his responses to a parent. I have in no way altered it other than to remove the mom and child’s name:

Ms [name removed to protect her privacy], thank you for writing me on behalf of [child].

As a husnad, father and grandfather of children who are free of medical problems,
I feel guilty somehow that I have been so blessed when you and others face such
unspeakable pain. I am truly sorry. Our prayers join yours and others that those
who can change the course of medical treatment will do so.

[Mom] if the law were changed in Georgia tomorrow, there would be no
relief to situations where cannabis is required. The change that will help your son
must be made at the federal level. There is no action we can take to bring about
that change by enacting a permissive law in Georgia.

I was offered this observation Monday by a parent who said his son was doing
fine with a marijuana treatment, using his term, and he felt he no more broke the
law by buying it illegally than if Georgia make it ok, but the feds did not and he bought it
then.

You make a compelling case for federal law change…please do not give up.

In Christian compassion

Jerry Luquire 706 366 8298 You are free to share this

response as you see fit.Co, thank you for writing me on behalf of [child].

Interesting. So his argument is the conflict of state laws and federal laws. This to him is more important than saving lives. Not to mention, we have already seen that the feds are making the choice not to interfere in other states. So does this mean he would support us if the feds wanted to make a change? I can’t help but suspect he would not. But this is a great way to oppose a potentially life-saving/changing medication and try not to look like a bad guy. Luquire made quite a name for himself battling Sunday alcohol sales and trying to prevent it from going to a vote by citizens, even though this was a local county and city issue. So I find this quote from a 2011 news article very interesting:

“I hate government control of people, their business and thoughts — most of all their thoughts.” -Jerry Luquire

To my readers that haven’t yet done so, please contact your legislators and Governor Deal letting them know that you want sick people to have access to medical cannabis. This is being done at the state level, so we’re not asking you to contact your representatives in D.C., but the ones right here making Georgia law.

Contact Governor Deal here.

If you aren’t sure who your local legislators are, find out here.

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At the end of my previous post, I included an open letter written by one of the parents leading this cause. He includes hard data on how his son has been helped since they were left with no choice but to leave their family and go to Colorado. If you missed it, please check it out.