Tag Archives: Janea Cox

Current Events, Medical Marijuana, Parenting

When will Georgia’s medical cannabis refugees come home?

July 17, 2014 Rebecca Gaunt 6 Comments

In the months since Georgia’s 2014 legislative session ended without passing proposed medical cannabis legislation (due to political games, not lack of support), the community of medical refugees in Colorado has grown.

Notice anything funny about the south? Sing with me! One of these things is not like the others… Admittedly, the laws in the bordering states are of varying efficacy. South Carolina, for example, is only an immunity law that protects you if you are caught with high CBD strains, but does nothing to help patients obtain it. Florida, on the other hand, is allowing for the growing and selling of high CBD strains next year. If Amendment 2 passes in November, Florida will be able to enact an even more comprehensive program that will benefit more people and conditions.

So now meet some of the Georgia families that are waiting to return to their homes, families, doctors, therapists and friends.

The Cox family

The Georgia bill HB 885 was also named Haleigh’s Hope in honor of this little girl who turns five this month. Shortly before this year’s legislative session ended, Janea and Haleigh packed up and moved to Colorado because Haleigh, who has Lennox-Gastaut syndrome, was suffering life-threatening seizures that caused her to stop breathing. Her dad, Brian, was unable to go with them because of his job and now they have to live apart.

Haleigh before.

Haleigh after.

As I scrolled through the Hope for Haleigh page I was struck again by the change in her. Janea takes and posts a lot of pictures and I could see the improvement, but in looking for before pictures, I was struck by how difficult it was to find photos of her looking at the camera or smiling. Now we see quite a few of those. Sitting in a swing by herself wasn’t possible a few months ago. She also said her first word in Colorado — Mama. Haleigh is not seizure free and still has some rough days, but she has also had some seizure free days. That simply didn’t happen before she started on Haleigh’s Hope provided by the Hope Foundation. Janea has said that she felt like she was finally meeting her child these last few months. Haleigh has even been able to wean off one of her seizure medications. But living apart from Dad is emotionally taxing and they hope that 2015 will bring legislation that will allow them to be a family again.

The Oliver family

Tripp had his first seizure on April 9, 2009 and was diagnosed with Dravet syndrome. He has tried more than a dozen medications since then and in April of this year, he and his mom moved to Colorado where he started THCa through Realm of Caring. It was hard to leave Dad and his team of therapists who have spent years working with Tripp in speech, occupational, feeding and physical therapy, but since then he has had two separate three-week streaks in which he had no convulsive seizures. Mom describes him as brighter and happier with improving speech capabilities. You can follow his journey at Tripp’s Trip.

The Klepinger family

The Klepingers left for Colorado late last year. They still own their Georgia home with the hopes they can return to it and their extended family and support network. Hunter is still doing well on Charlotte’s Web. I shared Hunter’s successes previously in this post. Since then, Aaron and Dawn have a welcomed a third child, lovingly nicknamed their Colorado Tumbleweed.

Hunter with Rep. Allen Peake, sponsor of Georgia's 2014 medical cannabis bill. Peake flew out to Colorado to meet the families. — Hunter with Rep. Allen Peake, sponsor of Georgia’s 2014 medical cannabis bill. Peake flew out to Colorado to meet the families.

Aaron invites any legislators with doubts to come to Colorado and meet the kids. “Seeing is believing,” he says.

The Clark family (follow them at Hope for Caden)

“My Caden has had thirteen completely seizure-free days! Understand that was never a possibility before! He no longer seizes during the daytime at all, only at night,” Kim Clark posted in May of this year. “There was no hope before this, nothing. Caden’s life was seizing somewhere between ten up to into the hundreds times a day. There was no life. Coupled with the side effects from medications, my boy was miserable. Now we are so blessed that he is 10 years old and we are trying to learn how HE CAN LIVE!”

Kim posted this photo recently with the caption "Slowly healing." — Kim posted this photo recently with the caption “Slowly healing.”

But Caden’s healing has come at a price. The Clarks are also a split family. Kim is in Colorado with the kids and Dad Chris has had to stay behind in Georgia for work. They share the same reality as the other families living hundreds of miles apart. Dad can come visit them, but they can’t go home to see him because they can’t legally travel with the oil. Recently, Kim and Chris traded places for a short period so she could make a trip home.

Kim sits on the front porch of her Georgia home, possibly for the last time, as they plan to put it on the market due to the expense of maintaining two households.

The Sumlin family

Sheryl and her daughter Trinity arrived in Colorado earlier this summer.

It’s early to gauge the response of Trinity’s seizures to Haleigh’s Hope since mom opted to titrate up to the usual starting dose, an incoming tooth is causing seizures and Trinity is requiring supplemental oxygen as she adjusts to the altitude. However, Mom is seeing beacons of hope in small things like wiggling her toes, calmness, awareness, making sounds and sleeping better.

But leaving her support network has been extremely tough. “It is harder than I thought it would be,” Sheryl says. “Although it’s beautiful here, it is not home. My daughter’s school and that whole network has been a huge part of our lives for the last 5-6 years. Also, friends who knew us since forever. I think it’s unfair that we have to move so far to have an opportunity to try this medicine.”

Sheryl is out there without nursing help or a car. Prior to flying out she donated her vehicle to another family in need. A fundraiser was set up by a third party to help her with expenses, but she never received any of the donations that were made on her behalf. She is grateful to the Journey of Hope foundation, a non-profit started by Rep. Allen Peake, for coming through and helping her financially with the move.

The Lowe family (follow them at Paws for a Princess)

Corey worked tirelessly during the 2014 legislative session to persuade Georgia legislators how badly we need access to cannabis. She was devastated when it didn’t pass, and by May, her daughter’s seizures were getting out of control. She had a tough decision to make.

Interviewing with CBS 46 about their impending move after Victoria was admitted to the hospital.

In June, with help from Journey of Hope, they packed up the car and drove across the country leaving behind Corey’s job, her husband and Victoria’s siblings.

Since starting on Haleigh’s Hope, Corey tells me Victoria has had an 80 percent reduction in seizures. From several a day to this:

The incredible eye contact and improved communication Victoria is showing now helps alleviate the pain of leaving their home, but Corey still worries.

“It’s great, but at what cost,” she told me. “How will this affect my children, who I left behind, in the long run? Will they resent Victoria because I had to leave them behind? How is not having a mom around affecting them?”

She also feels guilty about the families that simply don’t have the means or circumstances to move across the country. “The absolute worst part about having this medicine is seeing kids back home that need it. It’s hard to celebrate the success when kids are going into the hospital because of seizures.”

The Klepinger, Clark, Lowe and Sumlin family sharing their 4th of July celebration in Colorado.

Related Posts:

The Side Effects of Medical Cannabis

U.S. Representative John Fleming Is Out to Prevent Access to Medical Cannabis for Our Kids

Current Events, Medical Marijuana

And another medical marijuana refugee is born…

March 14, 2014 Rebecca Gaunt 2 Comments

Janea and Haleigh left for Colorado yesterday. Haleigh is the little girl for whom HB885 is named “Haleigh’s Hope Act.” The awesome Rep. Allen Peake met her and immediately began his crash course into the world of medical cannabis and CBD oil, pushing this Georgia bill with everything in him. But Haleigh’s declining health means she can’t wait. Her father must stay behind in Georgia because of his job.

HB885 has passed the senate committee but with major changes. Cultivation is out. Basically, it provides legal protection to a person caught with CBD oil. It does not help us obtain it. This was always a hurdle even with cultivation (there were different issues surrounding that). You’d have to get it in a legal state and get here without being caught. Frankly, places like Realm of Caring are not going to sell it to you knowing you plan to cross state lines against federal law because that puts them in danger of being shut down by the DEA. It’s important to understand that this bill, even if passed on the senate floor, signed by the governor and made law, would not allow everyone to run out and get it for their kids. It does prepare our state, however, for a change at the federal level. If the feds reclassify it with the DEA — as they need to — we are ready to go. And hopefully, passing this in such a conservative state will add more pressure to the federal government to get off their butts and help people.

Another twist is that a separate bill is now attached to HB885. The chair of the senate committee, Renee Unterman, has been trying to pass a bill for five years (Ava’s Law) mandating that insurance companies cover treatment for autism (Georgia is one of a minority of states that don’t require autism to be covered). A compromise bill that increases benefits up to age 6 is now part of a package with HB885 called the Kid Care Act. The autism bill has also been tacked onto HB943, which would prevent insurance discrimination over certain types of cancer treatment. The reason is that the autism bill alone would have to go through subcommittee in the House, and thus far, they haven’t been willing to hear it. By tacking it onto bills that have already passed the House, it bypasses the subcommittee when it goes back to the House for approval for the change.

Now the bill must go through the Senate Rules Committee and then go to the Senate floor for a vote. Then it goes back to the House for approval. Last day of session is March 20. Nothing like going down to the wire! Once again, if you haven’t e-mailed your Georgia state senator yet to support HB885, you can find out who yours is at openstates.org.

Also of note are two op-eds in the AJC today. Eli Hogan shares his experience living with Crohn’s Disease and it is a great read. It is followed by a counter-point from Rep. Sharon Cooper. As you read it, please keep in mind that she voted to pass HB885 twice. First out of committee, then on the floor. I would also urge you to read some of the excellent comments from parents below the essays.

If you missed Sanjay Gupta’s follow up to last year’s special Weed, you can find it here. The original is here. Anyone who cannot invest the 45 minutes it takes to watch at least one of these has no right to question the people who are fighting for these changes.

Medical Marijuana, Parenting, Tuberous Sclerosis

The hearing on HB 885 and a diet decision

February 11, 2014 Rebecca Gaunt 7 Comments

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.

Current Events, Medical Marijuana, Parenting

An unsettling appointment and a great press conference

February 7, 2014 Rebecca Gaunt 6 Comments

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.

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.