Tag Archives: Haleigh’s Hope

Medical Marijuana, Parenting, Tuberous Sclerosis

I disappeared because of weed.

April 11, 2016 Rebecca Gaunt 3 Comments

Shameless clickbait title, but it’s technically true.

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

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

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

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

Meeting a manatee at Mote Marine in Sarasota.

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

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

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

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

I have high hopes for the incoming warm weather.

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

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

Georgia, Medical Marijuana, Parenting, Tuberous Sclerosis

Connor gets to join an Epidiolex trial!

November 26, 2014 Rebecca Gaunt 2 Comments

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

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

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

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

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, Guest Blogs, Medical Marijuana

Medical Cannabis and Political Games

March 15, 2014 Rebecca Gaunt 1 Comment

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.

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.

Current Events, Medical Marijuana, Tuberous Sclerosis

Hitting Capitol Hill in Washington, D.C.

March 10, 2014 Rebecca Gaunt 4 Comments

So much excitement over the last couple weeks. Where to begin…

HB885 passed the House vote 171 to 4. It now awaits a hearing in the Senate. If you haven’t yet contacted your Georgia state senator, please do so right away. If you aren’t sure who it is, check here.

Chris and I flew up to Washington, D.C. last week to meet with our representatives about the continuation of funding for the Tuberous Sclerosis Complex Research Program (TSCRP) which is part of the Congressionally Directed Medical Research Program (CDMRP) in the Department of Defense (DOD). Yes, I am drowning in a sea of acronyms. Quick quiz: how many of these acronyms do you know?

AML, TSC, SEGA, LAM, SEN, CBD, CW, FDA, THC, DEA, RoC, VNS, CPS, TC, GW, IND, LGS, HIPP, KB, CHOA, PT, SLP, MT-BC, MAD

(Answers: angiomyolipoma, tuberous sclerosis complex, subependymal giant cell astrocytoma, lymphangioleiomyomatosis, subependymal nodules, cannabidiol, Charlotte’s Webb, Food and Drug Administration, Tetrahydrocannabinol, Drug Enforcement Agency, Realm of Caring, vagus nerve stimulator, complex-partial seizures, tonic-clonics, this is the name of a pharma company (I actually have no idea what GW stands for), investigational new drug, lennox-gastaut syndrome, Health Insurance Premium Payment Program, Katie Beckett, Children’s Healthcare of Atlanta, physical therapy, speech-language pathologist, music therapist-board certified, modified Atkins diet).

That fact that I know those in no way makes me smart. It just means I can do even less math than before because I’ve had to drop everything number-related dating back to second grade to make room for it all. To be honest, that only equates to a couple of years. It was all downhill from fourth. Also, don’t ask me to pronounce most of them.

Now back to DC…(see how I did that?) Volunteers flew in from all over the country and we swarmed the Hill in our sexy blue jackets. There aren’t words for how excited I was to discover these had thumb holes. I love thumb holes.

Fellow TSC mom Reiko and my hubby Chris helped me hit all the Georgia congressional offices.

We secured promises of support from the offices of John Lewis, Hank Johnson and David Scott. The meeting with David Scott was my favorite as I had no expectation that we’d be promised support on the spot like that, and the staff member we met with immediately began asking questions about what was going on back in Georgia with HB885 when we mentioned TSC’s link to seizures. It was awesome to know they were talking up there. Don’t worry, fearless trainers from the previous evening’s dinner, Reiko got us right back on topic 🙂

Chris and I even got some time the first day to explore so we went to Ford’s Theatre and the house where Lincoln died. His blood-stained pillow and the tiny gun that killed him are on display. The balcony is preserved as it was, and I was actually surprised to learn that it is a working theater. We did some more walking around including a photo op at the White House where our phones died simultaneously only letting us each get one shot. I don’t want one more stupid iPhone model coming out until they can make a battery that lasts more than five minutes.

The last night we were there was the Volunteer Recognition Dinner. Four people were awarded a Franny, the volunteer of the year award for 2013. Chris had broken down and told me he nominated me a couple weeks prior — so very sweet — but that did nothing for my slow processing as one of the winners was described as having a son Connor’s age, a blog with the same amount of hits and followers as mine and involved in similar activities. I thought, man, who is this person leading such a similar life? Oh it was ME! ME!

Then, like a jerk, I forgot to thank Chris a la Hilary Swank and Sean Penn who ended up divorced after their Oscar acceptance speech snubs of their significant others. He swears it doesn’t matter, but just in case: THANK YOU, MY AWESOME HUSBAND!

Well, if you haven’t read it yet, check out my post from Sunday here. It is now my most read and shared post of all time. I’m thrilled to help get the message out on the potential benefits of medical cannabis. Though I can’t help but wonder why you all aren’t as intrigued when I blog about my repetitive dreams of my teeth falling out or weight loss powder shakes…

With CEO and President of the TS Alliance Kari Rosbeck.

Grandma and Grandpa took Connor to aquatic therapy while we were gone. We did it! Four whole nights away! Guess we’re ready for the islands…

Please check out my latest post at Mommy Hot Spot.

Medical Marijuana, Parenting

The Side Effects of Medical Cannabis

March 9, 2014 Rebecca Gaunt 15 Comments

I’ve posted before about Hunter, an eight-year-old boy from Georgia, whose family relocated to Colorado several months ago to try and treat his severe epilepsy with cannabis oil. Previously 12 FDA-approved meds, the ketogenic diet and a surgically-implanted VNS had failed to make him seizure free. He was not a candidate for brain surgery. Some of his meds made him sleep constantly or scream. Here is an update.

This non-psychoactive oil has made an incredible difference in Hunter’s quality of life. According to Mom, “His bad seizures (myclonic clusters) would happen almost daily before and last 5-10 minutes. NOW, he is averaging one a week and they are under 2-3 minutes. In the month of February he has had 4 so far. This is HUGE! His quick seizures used to last upwards of 30 seconds and happen 10-20 times a day. After a month or so we were still seeing them every day and several times a day but they were literally seconds and half the time we couldn’t tell if he was actually having a seizure. Now, after 3 months, we are hardly seeing ANY!”

But in fairness, we must address the side effects of this medication. Sure, it might help kids with terrible seizure disorders that are damaging their brains and ability to function and learn, but surely there are SIDE EFFECTS? Well, you’re right. There are. Here are the side effects Hunter is experiencing.

1. Increased eye contact and the ability to maintain eye contact.

2. He no longer needs Miralax and daily suppositories to go to the bathroom.

3. He is relaxed. His fists no longer remain in a clenched position with his nails digging into his palm, making his hands bleed.

4. After eight years of only being able to sleep on his back, he can now roll to his side and sleep in a new position.

5. He now rides the school bus since Mom no longer worries about him having a bad seizure on the bus.

6. There have been no calls from the school for EMS.

But I guess a few side effects are the price a parent must pay for giving their child quality of life. That and leaving your entire life behind in another state.

Update 3/10/14: The Klepingers were on CNN today. Check it out here.

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.

Aaron Klepinger clutching a photo of his son Hunter.

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:

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 🙂

Medical Marijuana, Parenting

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

January 29, 2014 Rebecca Gaunt 3 Comments

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.

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

Living in Atlanta, loving travel and watching my son kick tuberous sclerosis complex's butt.