Category Archives: Medical Marijuana

The hearing on HB 885 and a diet decision

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I guess blogging really can be therapeutic. After I posted Friday about our trip to Birmingham regarding the ketogenic diet, I just didn’t feel right. I had a tightness in my chest that I hadn’t experienced in a long time. Anxiety? I couldn’t stop obsessing over our appointment with the neurologist and how she just wasn’t on the same page at all. I guess it’s true what people say about going with your gut. I looked back over my correspondence with CHOA. I had never cancelled our March appointment just in case. Connor is already responding so well to the tweaks in his diet that aren’t even the full-blown MAD or ketogenic diet. I went upstairs to find Chris and said, “you know…we still have the CHOA appointment, and the nutritionist said she could help me start MAD at home…” And within seconds it was confirmed that neither of us were comfortable moving forward in Alabama with that neurologist. So I emailed the nutritionist that we would be sticking with CHOA and I am waiting to here from her.

Yesterday I attended the first committee hearing on HB 885. I don’t know what I expected, but it wasn’t what I got. It started late as the morning session had gone long. Some members came in late to the hearing as they were at other meetings that overlapped. Paige Figi — Charlotte’s mom featured in the Sanjay Gupta special — flew in with Joel Stanley from Realm of Caring to testify about what they are doing in Colorado and the success they are having. They are in the process of getting FDA-approval and they are doing studies, but it is a time consuming process and children with severe seizure disorders don’t have time to wait. They explained that they are a heavily regulated industry. They also said they now have a waiting list of over 2,000 people nationally and internationally, hoping they will be allowed access.

Dr. Mike Green then testified and shared that the Medical Association of Georgia supports the bill. Dr. Smith testified about his experiences having a child with a seizure disorder (Doose syndrome) and the awful side effects that can come with seizure medications. He and Dr. Green also shared about the Epidiolex drug trials that are going on. Epidiolex is manufactured by GWPharma using CBD as the active ingredient. Dr. Smith tried to get his child into one of the studies, but they were full. Dr. Flamini also testified. He is the neurologist to many of the kids whose parents are fighting for this. He is actually the mysterious neurologist I frequently refer to in this blog. He is very supportive of CBD studies and is applying for Investigational New Drug status (IND) so that he can work with Epidiolex in his office. It is a very lengthy, difficult process to work with a schedule 1 substance, but even if he is approved he is very limited in how many people can use it. Though he was testifying in support of HB885, he is actually excluded by the bill because he has a private practice. It would only be available via research hospitals.

I also want to point out that Epidiolex is in trial phase and not yet FDA approved. It has been granted orphan status, which speeds things up, but we’re still talking years. May I remind you that vigabatrin was not FDA -approved in the U.S. until 30 years after the first trials. Ahem.

Several parents shared their heartbreaking stories. Janea Cox shared about Haleigh, pleading with the committee not to let her daughter die. Aaron Klepinger shared about the amazing success their son Hunter is having in Colorado and how badly the family wants to come home. One dose stopped him from clenching his fists so tightly that his hands would bleed. Jonathan Jiles shared about his son Kason’s battle with Ohtahara syndrome. Sgt. Chris Clark, a 26-year veteran of the police department shared about his family and how his wife and child are in Colorado for treatment while he remains behind to provide income and insurance. He also shared that his son had a brain surgery that caused a stroke. I wished they could have had more time, but were all rushed because of time constraints and the impending bad weather.

Then came the oppositional speakers with lengthy presentations. Sue Rusche from National Families in Action opened with a YouTube video she took of an advertisement for Indispensary in Colorado. Dispensaries are where you can buy marijuana products. It took me a while to ascertain her point, but it seemed to be, hey, look at all these recreational marijuana products. These are available in the same place as where some of these Colorado parents are obtaining their child’s medication. It was a long, slow video with lots of silent footage of recreational products. Personally, I was shocked it was allowed to play out in full considering the rush for time and that testifying parents had to talk quickly. It was also quickly pointed out by Rep. Kaiser that it was irrelevant. Georgia is not Colorado. This is not what we are doing here. That is simply a place in Colorado where medicine may be picked up, but we wouldn’t have that here. We are interested in a non-psychoactive oil that can’t get you high only ONLY; recreational is not on the table. We want an oil form, not buds. Rusche was clearly not supportive of products such as Charlotte’s Web which has saved many lives in Colorado. She pushed the Epidiolex trials repeatedly and insisted it was not hard to get, that any doctor can apply for IND status and have it in 30 days. This was after Dr. Flamini already testified that it was a difficult process. The doctors behind her were also shaking their head as she spoke. But no matter what was asked, she insisted that Epidiolex, courtesy of GW pharmaceuticals was the only suitable option. She was so insistent that one of the reps eventually questioned whether her organization received money from GW. A representative then asked her if Epidiolex is so easy to get, why aren’t these parents doing that? “I wish they would!” was her response. And at this time, I ask you to recall above where I mentioned that one of the testifying doctors tried to get it for his kid and couldn’t. At that point, Rep. Peake asked her, ‘Would you tell Aaron Klepinger to stop giving Hunter Charlotte’s Web and get in line for Epidiolex?” She said no.

Some doctors from CHOA spoke. While they have reservations, they are very interested in possibilities of CBD oil. Then Rick Allen of the Georgia Drug and Narcotics Agency spoke of the challenges of getting it here due to it’s classification as a schedule 1 substance — no doubt a major hurdle. He said that where we stand, something like Charlotte’s Web cannot be brought into the state legally. University of Mississippi is the only place permitted by law to supply as part of research projects.

Then came, what was for me, some of the most disturbing testimony. Karen Tinker gave lengthy testimony as a mother of a son with epilepsy. I was confused at first. Why was she at the end rather than with the other parents? Why have I never seen her or heard her name before? As it turned out, she wasn’t testifying for the bill. She was testifying against it. She started out with a similar story. Many meds failed her son and he recently received the VNS implant, which she acknowledged comes with it’s own dangers, and wasn’t guaranteed to solve the problem. She talked about her methods of evaluating treatment options for her son, and said that she had chosen not to use Onfi because of potential side effects (a med that I felt we had to try for Connor). But she stated that CBD oil did not have the research to back it. That we needed wait to several years to see what studies would say. She likened the passing of the bill to opening Pandora’s Box and said she worried that all the positive headlines about marijuana would lead her teenage son to try recreational pot. After the fact, I saw her Linked In profile. It turns out she owns a company that provides mobile drug testing of employees to companies. She doesn’t seem to differentiate between medicinal and recreational.

It was heartbreaking that a parent of a child with seizures would do this to other parents. Especially after Janea Cox had cried and shared that Haleigh has stopped breathing 56 times in the last month.

I respect the right of every parent to choose the course of action for their child. Not every parent is comfortable with medical cannabis at this point and I respect some would not opt to use it. Just as Tinker chose not to use Onfi, we did choose to use it. I do not respect someone that tells others they shouldn’t do something that could save their child’s life. I am so lucky that Connor’s situation is not as dire as the situation of the testifying parents. It’s cruel to try and stand in the way of something that could save their lives.

After that, a couple doctors testified that had been recruited by Rusche. I’ll be honest. I didn’t hear much of what they had to say because I was still in shock over Tinker’s testimony. At that point the hearing had hit three hours and it was an hour and a half past when it was supposed to end. The remainder of speakers were asked to return to the next hearing.

I’m not sharing all my thoughts at this time on the hearing in the blog. If interested, I can talk more one-on-one. I will provide more detail at a later date. All I can say is that yesterday was an eye-opening experience.

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Out of the closet…….

you don't know Jack

It has been over a year and a half since I have begun blogging about my adventures with Jackson.
Through it all I have received nothing but positive feedback and praise for this little boy whose life touches many.
My readers here and over at Jack’s Facebook page have come to love this little boy.
Jackson’s smile gives joy to people.  His love of fuzzballs, slinkys, and all things spinning is endearing.
His struggles with seizures and TSC is inspiring.
Jackson is, as always, living in the moment.

So now it is time to come out of the closet.
Jackson is part of a movement that many support, some fear, and others are on the fence about.

Jackson is a medical marijuana patient in the state of California.
He is so with the blessings/knowledge of his local pediatrician and his TSC clinic.
While some may have images of a an…

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An unsettling appointment and a great press conference

Quick plug: Lisa Cummings, another TSC mom I know through our online community often writes and shares poems about her life with her daughter, TSC and special needs. She just published her first collection of poetry and it is available through Amazon. Please check it out here.

The journey toward the ketogenic diet continues…and might end with me jamming a screwdriver in my ear. We have been pursuing diet therapy since before Thanksgiving. The wait lists at keto clinics are ridiculous. The one that could get us in the earliest was in Alabama, so we had our new patient appointment Tuesday. Two hours there and back again. Connor’s neurologist had sent his 157-page chart over well in advance. I knew that this appointment would be, for the most part, a formality as the neuro that will oversee him on keto has never treated him. As expected, it was a lot of repeating his history. There was only one thing I wanted after 2.5 months waiting–the date Connor will be admitted so we can get this damn diet started. We’ve had this hanging over us for months, afraid to plan trips and make plans. I thought that would finally come to an end yesterday, but it didn’t. She agreed to take him on, but we still have to wait to hear when he gets admitted. She hoped it would be February, but couldn’t say for sure. So until they call, I have to worry that they will want him during the March dates we’re in DC or Boston OR that they will want him in right before those dates and I will have two days to prepare for traveling on this insanely strict diet.

To be honest, the appointment was a little strange. First, I was bummed to find out that our stay will be longer than the typical keto stay because she wants to do an EEG first. Granted it has been a while since he had one, but I don’t want to spend a week in the stupid hospital. But if that’s what it takes to get things going, I wasn’t going to argue. The thing is, we just got the feel that she wasn’t that thrilled with the ketogenic diet. She wanted to know why we weren’t pursuing surgery. I consider surgery a last resort for the most part. It was an easy choice the first time because the seizures were so frequent and causing major developmental delays. But he’s much better now, and has already responded to some tweaks I’ve made in his diet on my own leading me to believe the diet will be beneficial. Also his EEGs, while indicating activity from the left occipital lobe, have also shown activity from other areas.

Don’t get me wrong…it’s not that we wouldn’t consider surgery again if a newer EEG could determine one particular tuber as the only or primary culprit (and my guess is that it would be the one in the left occipital) but since our referral was specifically for the diet, I really wasn’t expecting such enthusiasm for surgery. The doctor even made a point of expressing concern about potential side effects of the diet, and I was thinking…what is going on here? At any rate, surgery is not on the table for us right now. I see no need for that if keto can do the trick.

I know neurologists have very differing opinions on the best course of action…I just finished reading a book (I recommend Fighting Back With Fat by Whitmer and Riether) that talked about how the diet was often used decades ago, but fell out of favor with the emergence of so many pharmaceutical options coming on the market. It made a comeback in the 90s when the son of a filmmaker — Jim Abrahams — was diagnosed with epilepsy and he wasn’t responding to medications. The ketogenic diet was his savior. His father later made a film called First Do No Harm with Meryl Streep and started the Charlie Foundation. Since then keto clinics have popped up all over the country, and in many countries around the world. More and more neurologists are coming on board with diet therapy because it has proven results, but there are still some that shy away, especially in other countries. The book had me so gung ho on the diet, that this neuro’s lackluster response threw me for a loop. The nurse that came in prior was very enthusiastic about it. But forward we shall move.

Wednesday was a better day. I finally met many of the other parents fighting for HB 885/ Haleigh’s Hope so that we can have access to medical cannabis in Georgia when we met for a press conference at the capitol building. I’ve been to DC to meet with legislators, but this was actually my first trip to the gold dome, even though I’ve lived in the Atlanta area since 1992. I was not prepared for how packed it would be. As a former teacher, I feel I can express what so many of you are thinking in many public places (i.e. Fernbank, the aquarium, the zoo, etc). Field trips are evil. A necessary evil. But evil nonetheless. I remember being at the aquarium in the role of teacher, with multiple schools crowding the walkways, and looking at all the people who paid full-price admission and thinking, “You poor b*******.” As I crammed onto crowded capitol elevators, I thought, the kids need to see these places, but perhaps we should pass a bill banning scavenger hunts. But I digress.

Dressed for politicking at the capitol.
Dressed for politicking at the capitol.

It was freezing outside, very much in contrast with the 100 degrees inside the building. The room numbers are all out of order, too, thus ensuring a healthy workout. I started out meeting my representative Don Parsons, who has signed the bill. We had a nice conversation and he asked me many questions about Connor. Then I had a scheduled meeting with my senator Judson Hill. That didn’t happen as he had not come in that morning. I was disappointed to say the least. I am not sure where he stands on the bill as I have had no luck getting a response from him. I continue to follow up.

Check out that landmark in background! Pshh. Not the gold-domed capitol...Johnny Rockets!
Check out that landmark in background! Pshh. Not the gold-domed capitol…Johnny Rockets!

We had a press conference at 11:15 with WSB’s Lori Geary, who has been a champion of the cause, presenting it in an appropriate way and making every effort to make key issues clear. For example, we are still trying to make sure people understand that kids aren’t smoking joints. It is an oil form, high in CBD, low in THC — though I do want to be clear that THC has medicinal benefits as well. But since it is the psychoactive component, people are more afraid of it than the CBD. At any rate, the kids aren’t getting stoned.

WSB's Lori Geary speaking with affected families.
WSB’s Lori Geary speaking with affected families.

Several parents spoke about their kids: Shannon Cloud, whose daughter has Dravet syndrome; Janea Cox whose daughter has LGS and for whom the bill is named (Haleigh’s Hope); Chris Clark, whose wife and child have relocated for treatment; Jonathan Jiles, whose son was born with Ohtahara syndrome; and Aaron Klepinger, who flew in from Colorado to speak about his son’s successful treatment in Colorado and how they want to return to their Georgia home. FYI: Haleigh is in PICU and really struggling. They are looking at having to relocate a medically fragile child to Colorado when she becomes stable enough for a life flight. Fundraising efforts have started here.

Aaron Klepinger clutching a photo of his son Hunter.
Aaron Klepinger clutching a photo of his son Hunter.
Shannon Cloud addressing the need for medical cannabis.
Shannon Cloud addressing the need for medical cannabis.

I’ll keep you updated as it progresses through the process. Here is the news clip (you can see me and Connor in the background several times).

I’ll close with a few more photos from the capitol:

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Wendi Scheck with son Hudson and Rep. Allen Peake (and service dog Denali).
Wendi Scheck with son Hudson and Rep. Allen Peake (and service dog Denali).
It's hard to tell a delighted toddler that you aren't supposed to pet service dogs :)
It’s hard to tell a delighted toddler that you aren’t supposed to pet service dogs 🙂

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For anyone who thought hell would have to freeze over for Georgia to move towards legalizing medical cannabis…

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

You were sort of close. Atlanta froze over creating a hell of sorts yesterday when Rep. Allen Peake dropped the bill HB 885 Haleigh’s Hope, named for Haleigh Cox, diagnosed with Lennox-Gastaut syndrome, who is still in the hospital. It now needs to go through committee in the house and if it passes, then get passed to the senate, and at that point will go to Governor Deal to be signed. Some basic details of the current version are:

The bill will be tightly restricted and very regulated, managed by a doctor, administered orally in oil or capsule form. Seizure disorders have been added to an existing law that includes cancer and glaucoma. (A previous 1980 law had allowed for controlled use for cancer and glaucoma, but due to stipulations on how it could be obtained, never actually benefitted anyone because they couldn’t get it.)

I’m very excited to see progress being made that could potentially benefit Connor and so many others. I’m anxious to find out the nitty gritty on exactly how and when we will be able to obtain it if passed.

Of course, this bill is met with controversy, and I don’t even mean the anti-any legalization whatsoever groups. People who want to treat medical conditions not expressly named in this bill are expressing their dismay. Another point of contention is the limited allowance of THC-where exactly we stand on that is unclear. The CBD oils are very high in CBD with very low THC and have great medicinal value. Since THC is the psychoactive component, this aspect gives great comfort to people who would otherwise oppose it. However, THC also has medicinal benefits. Some of the people being treated with CBD oil are supplementing with THC when the CBD oil alone is not enough. I don’t want to get too technical because this has been a learn-as I-go-along type of experience, and I do not want to unintentionally spread misinformation.

Haleigh's Hope-courtesy Corey Lowe
Haleigh’s Hope-courtesy Corey Lowe

But this is a start. I’m hoping we are headed toward access to all components that could help my child. If you are dealing with a medical issue that would benefit from cannabis, I highly recommend you contact your legislators with your story. I hope we are on a path to this being an option for everyone that needs it. Georgia is an exceptionally conservative state that just let adults make the choice to buy alcohol on Sundays and cannabis has been demonized incorrectly for decades. Miracles don’t happen overnight, even if they should. Getting this far required the persistence of some incredible parents that knocked on doors at the capitol and wouldn’t take no for an answer.

Atlanta’s Snowmageddon (Snowpocalypse? Can’t decide) that hit yesterday and had kids and teachers stuck at school and on buses, people sleeping in Home Depots, shelters, gas stations, strangers’ homes and in their cars on highways, while other people had their 20 minute commutes turn to nine hours only to ditch their cars and trek home on foot dominated the news. However, there was a front-page story about the bill in the Atlanta Journal & Constitution that continued to page A9 featuring none other than the little man himself.

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I also ask that you please watch and share this video about why this bill is so important.

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.

Politics and Pinot

Oh, I have a blog? I should probably update it. I’ve been so busy. I’m starting to get materials together for the D.C. trip with the TS Alliance in March, been filling out paperwork for Connor’s services and looking into starting hippotherapy (horses-yay!), and trying to read the books I bought on the ketogenic diet. I’m a tad bit nervous and anxious to get started. I’ve already tweaked his diet a bit to be low carb and higher in fat, which I think is helping his seizures, but no where near what the diet requires. It’s way too extreme to do without medical oversight. I can’t totally relax though because our appointment in Birmingham is Feb. 4, but that is just to meet with the neurologist. Though I was told he’d be admitted soon after, Connor doesn’t actually get scheduled for the clinic until that appointment. I’m scared they’ll pull some unexpected wait to start out of their pocket. I’d kept our appointment at CHOA just in case they could get us in earlier and save us the travel or in case something went awry with Birmingham. But come to find out, even though Connor’s neurologist has spoken to several people, and I have spoken to several people regarding starting keto, they still have him down for starting modified Atkins diet, even though the plan of action was changed before Christmas.  I wish someone could explain to me how I have several conversations with someone about the fact that I’m bring Connor in for one thing and at no point does anyone say, “oh oops. He’s scheduled for something else!” Whatever. It’s the same old thing with CHOA every time, no matter what it’s for.

I’ve also been wrapped up in the sudden and surprising momentum of the medical cannabis movement in Georgia. The parents I’ve been talking to did an amazing job of getting the attention of the media and several legislators. Things are rolling and there’s more to come! I’ve been emailing my state legislators and the governor and we’re really seeing a lot of growing support. Access to medical cannabis has the potential to be life changing for so many suffering people.

Connor’s stubborness is reaching epic proportions. He will be two in March and he still won’t give up the bottle. A couple weeks ago I thought we were rounding a momentous curve. He has a sippy cup with a mouthpiece that can be interchanged with the bottle nipple. We’ve been more focused on cup drinking lately so it had been a while since I tried putting the actual sippy cup mouthpiece on the sippy cup instead of the nipple. I handed it to him and there was 15 seconds of drinking. My hands were on my mouth, trying not to gasp, practically jumping up and down. Then he stopped, pulled it out of his mouth, gave it a careful visual inspection, realized he’d been had and threw it down. The next 30 minutes were a standoff in which he would have no part of it. He had to accept a few sips from his training cup and his straw cup (which he’ll only take when urged and helped) before I relented and gave him the nipple. I like to create the illusion that I’m winning.

In spite of all this, we did have a great night out this weekend with two of our couple friends. Connor spent the night with my parents and we went to a wine tasting, dinner, had some drinks and hung out at a friend’s place. Part of the excitement was that we would be able to sleep in on Sunday, but I was having so much fun that we didn’t head home until four. I don’t think Chris was too pleased — he really treasures his sleep — but he humored me.

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This morning I met up with Sara and her two boys for a trip to the Fernbank Natural History Museum. I wasn’t really sure Connor would be into it, but he had a blast. They have a pretty sweet play area.

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I’ll close with this open letter written by Aaron Klepinger. I posted previously about his son Hunter.

My son Hunter has had intractable epilepsy for over 8 years and the seizures have severely impacted his development. He was able to do more before his seizures, such as stand unassisted against the couch. After starting to seize, he has regressed to a 1 month old development level. He depends on us for everything (transferring, feeding, diapering, etc.). We have failed 12 pharmaceuticals, often with devastating side effects such as hours of screaming fits, increased seizures, non-stop sleeping, no sleep, etc. We have tried vitamin supplements, chiropractic, intense neuro-developmental therapies, ketogenic diet for 2 years with constant dietary changes, and VNS implanted (https://www.epilepsy.com/epilepsy/vns). 

He also has been diagnosed with a movement disorder. He flails his arms and legs and moves his head in all directions usually for hours at a time, sometimes in rapid succession. He moves and kicks so much in bed, we have had to put his mattress on the floor because he has fallen off the mattress. We are considering having to make a custom bed for him to keep him safe. His wheelchair has had to be customized heavily to stop him from hurting himself. We modified our Georgia home for his protection also. His shower there is extra wide so he doesn’t punch and kick the walls as he did when he was bathed in the bath. We also had to buy a ~$2000 bath chair out of pocket to strap him down while we bathe him. The typical chair covered by insurance would not provide enough support.

Since starting medical cannabis treatment, we are seeing way less seizures, more moments of relaxation, more happiness, greater eye contact, and greater awareness of his surroundings. Throughout his life, he has had a lot of GI issues, including constipation. We have noticed better motility with his bowels as we have increased the medical cannabis. He also used to clench his fists so tightly he would cut his hands with his fingernails. He did this fist clenching almost 24/7/365. He no longer does this.

In reviewing the past ~3 months of online seizure data, his seizures have gone from 17% of days without seizures (likely less than 17% if I dig further into paper records sitting on a moving truck now) to 47% of days without seizures after starting treatment (47% is a confirmed, hard number). Seizures that were 5, 10, or 20+ minutes before are now under 2 minutes. His more mild seizures we can’t even tell if they are a seizure now they are so quick and unpronounced. He holds his arms out as if he thinks he’s going to seize and then the seizure never comes. And this is all on a low dose, having just started medicine. Seizure medicines usually take months to tweak to a proper dose and this is the same way.

Haleigh Cox and 150,000 Georgians that have epilepsy should have the medical option of this gift from God. Thank you for helping us come home and share this medical treatment with so many other people suffering. 

For your colleagues in the House and Senate, Georgia has a great medical tradition, including Emory, the CDC, and many health oriented companies and non-profits such as the American Cancer Society. We should step to the forefront on this health issue too and lead the way for states like Alabama and Tennessee that are considering legislation. Lets look at the science and put patients first. Medical cannabis is improving my son’s quality of life dramatically. It is our moral obligation to end the suffering of sick people. Lets pass some legislation this session before someone dies from unsafe pharmaceuticals. Compare the 40+ side effects (including death) of the most prescribed seizure medicine (Depakote) to the side effects of cannabis (none, virtually). Add to that the benefits that patients are seeing. It is clear the science supports medical use of this plant. Lets move forward with a bill in 2013 so Haleigh can live and Hunter can come home and stop being a prisoner in the state of Colorado.

Let’s go Georgia…We can’t let Florida, Tennessee and Alabama beat us.

Oh, did you think this post was about football? Then you clearly don’t know me. It’s the SEC of MMJ. And Georgia is losing.

Some Alabama lawmakers ready to legalize marijuana-derived oil that helps control seizures

Article here.

‘Glimmer of hope’ for medical marijuana in Florida

Article here.

Medical Marijuana Bill Filed in Tennessee

Article here.

And for those still hung up on not being able to see marijuana as anything but an illegal drug (even though pediatric treatment is an oil that isn’t smoked and doesn’t get you high), why are you okay with FDA-approved drugs that can do this:

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One of Connor’s meds carries this rare but potential side effect. Read about it here.

Still opposed? I guess you are okay with seeing my baby do this.