Tag Archives: Kason Jiles

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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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.