Parental pleas for medical marijuana

Moderated by Tom Sabulis

Cannabis oil, or medical marijuana, is gaining traction around the country as a treatment for controlling seizures. Already, 23 states and Washington, D.C. have legalized it for medical use. After the Georgia General Assembly failed to act on medical marijuana last session, a legislative committee was formed to study the issue and make recommendations. At the second meeting, in Macon, I met the two parents who agreed to talk and write about the issue for today’s page.

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Medical marijuana – a sense of urgency

By Tom Sabulis

Katherine Lynch knows her daughter, Ann Townsend Lynch, could use some relief. That’s why she’s seeking legal access in Georgia to “medical marijuana,” an oil extract of the plant that’s been shown to drastically reduce seizures in people suffering a variety of ills. Shortly after birth, her daughter, now 3 1/2, suffered a “hypoxic ischemic event” that deprived her of oxygen and left her brain-injured. By age one, she was enduring approximately 100 seizures a day.

Lynch, a 36-year-old commercial real estate professional, recently talked about Ann Townsend’s condition and why she hopes state legislators will move forward on legalizing medical marijuana.

Q: Tell us about your daughter.

A: She was born perfectly healthy. No concerns whatsoever, and four days later, (she) started having seizures. After a number of tests, they determined there was a brain injury and a prognosis of a likelihood of seizure disorder, global developmental delays and cerebral palsy.

Q: When did she start having seizures?

A: She had them right at the beginning, and they got them under control. At about nine months to a year, seizures started happening again. They ramped up pretty quick. Before we knew it, she was having a hundred a day, and she was in the hospital.

Q: Her treatment for this was Phenobarbitol?

A: That’s one. She’s on three different anti-epileptic drugs, pharmaceutical drugs. She’s also on a ketogenic diet, which is a very strict, controversial diet for kids of this age that takes out all carbs and sugar.

Q: What did the doctors say?

A: The doctors tell you if you can’t get adequate seizure control with one or two anti-epileptic drugs, the chances of getting control are slim to none with any drugs that are available. I spent the next two years trying to accept that the world we’re going to be living in is never going to have the perfect answer. It’s just going to be a balancing act between seizure control and Ann Townsend being completely sedated, with a goal of trying to keep her as comfortable as possible.

Q: How did you hear about medical marijuana?

A: The Sanjay Gupta (CNN) special came out in August of 2013. I had heard people talking about it. I probably had the same reaction every other parent had: First, don’t get my hopes up. And second, I’m not going to give marijuana to my kid. But seeing your child suffer each day will force you to be open-minded to anything. Once you see how other kids (receiving medical cannabis) are getting seizure control, and are awake and alert for the first time in their lives, not being totally sedated, it definitely strikes your interest.

Q: Would you consider moving from Georgia to get that treatment?

A: I’ve considered it. I’ve not completely eliminated it as a possibility. The more I research the issue, the stronger I feel about the fact that no one should have to move to get access to something that every neurologist I’ve spoken to is 100 percent on board with.

Q: What would you like to tell the Georgia General Assembly?

A: My message is that Georgia legislators need to understand the sense of urgency. We can’t wait around. We’ve already lost two kids whose parents were lobbying with me at the Capitol this past winter. A lot of these kids are so young. There’s potential that they could have a dramatically different quality of life if we do something now. Little kids that are in the most important developmental stages of their life are being made into complete zombies (through sedation), and they’re missing out on this time to develop. Many Georgia legislators like state Rep. Allen Peake are doing admirable work to set up a framework for safe access in Georgia. Due to federal regulations, the issue is incredibly complex. But that is no excuse not to be proactive. On a federal level, it is a complete mess. The feds obtained a patent for the neuroprotectant qualities of marijuana components, but it does no good until they admit that it was a mistake for marijuana to be listed as a controlled substance. It’s simply irresponsible not to move this forward at all levels and take the necessary steps to untangle this mess.

Q: Should Georgia cultivate and regulate medical marijuana, or just decriminalize its use?

A: Why not both? I understand both routes have implications, but I trust elected officials and experienced consultants to figure it out. I’m not an elected official, I’m a parent. I’m a mom. My goal is to seek effective and humane treatment for my daughter that could be out there.

Should hope depend on your zip code?

By Chris Clark

We were waiting out his days, waiting for the seizure that would take his life. That had become the devastating truth for our family. Waiting without hope.

We had exhausted all “valid” medical treatments for our son Caden — numerous combinations of pharmaceuticals that would provide mild, temporary relief of hourly seizures. But there were the consequences of those powerful medications to manage: Near constant fatigue, nausea, kidney stones, liver damage, constipation, dizziness, rashes; one medication slowly diminished his ability to walk.

Caden also had two different radical brain surgical procedures, one severing the two hemispheres of his brain in hopes to limit the amount of seizures and another call a lobectomy (the new, less stigmatized word for lobotomy). The right frontal lobe of his brain was removed in hopes of drastically lowering his daily seizures. Caden suffered a post-operative stroke shortly after. The seizures, though lessened, continued to number hundreds a day. We also tried two extreme medical diets that mimic starvation in hopes to lessen the hourly impact of continual seizures.

We have truly enjoyed the “gold standard” of neurological care with Caden. We just ran the full course of treatment and had to look outside convention. We are pro-science people. So we began researching medical marijuana.

When my wife first came to me with the idea of using medical marijuana for our child, my first thought was “not happening.” Then she showed me the stories of Charlotte Figi and Zaki Jackson, two children in Colorado whose seizures have been brought under control through the use of medical marijuana. We were both surprised by the amount of research that has actually been done with this plant. We were very surprised to learn that while the federal government classifies cannabis as a Schedule 1 controlled substance “with no medical benefit,” it also holds a patent for its medical use.

I started to compare cannabis to the FDA approved drugs/treatments we’d given Caden and, considering the new lives that children like Charlotte Figi and Zaki Jackson are living, our decision was made. We would split up our family. My wife and young boys would move 1,500 miles away to Colorado, to seek the hope that we just didn’t have before.

My wife and I used to say, “Hope is a dangerous thing for parents like us.” In Colorado, with the help of friends at The Realm of Caring foundation, we found just that.

After stating Charlotte’ Web, a strain of medical marijuana, in March, Caden has had upwards of an 85% seizures-reduction rate. Imagine what that means for a child that could seize hundreds of times a day? Shortly after starting treatment in April, our son had the very first seizure-free day of his whole life! That lasted for six days. He is truly learning a new way of life.

However, with one year of separation quickly approaching, my sons are growing up away from me. Our family has made tremendous sacrifices and adjustments to seek this life-changing treatment for our son. Should hope depend on your zip code? Should families in America be forced to relocate, separate and stay away in order to access this treatment?

What Caden is using for seizure control is classified as therapeutic hemp, with less than .03 percent of THC (the psychoactive ingredient in marijuana). The real truth is that Caden has been “high” his whole life on pharmaceuticals. Now, he is actually with lowering those meds and controlling his seizures sober for the first time in his life. He is healing, slowly.

We don’t know how this will end for us as a family. We thought for sure, with all of the legislative support in Georgia last year, that our family would be home by now. Sadly, we just sold our house here to continue to finance this treatment in Colorado. This is one of the many consequences of the “medical refugee” life we have to live in order to heal our child.

 Chris Clark is a sergeant with the Atlanta Police Department. His son Caden, 11, suffers from Lennox Gastaut Syndrome, a rare and often debilitating form of childhood-onset epilepsy.

 


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