Editor’s note: Earlier this month, the story of Charlotte Figi went viral, highlighting her severe seizures and how medical marijuana has been her only effective treatment. Charlotte has Dravet syndrome, and because she lived in Colorado (where marijuana has been legalized by the state) she was able to try this treatment option which has, for her, worked wonders.
The following is an edited transcription of an interview with Jennifer May, a Utah mother whose son also has Dravet syndrome. A self-described conservative Mormon, she wants the same treatment option legalized in this state—and soon.
Libertas Institute: What is Dravet syndrome?
Jennifer May: Dravet syndrome is a rare and severe form of epilepsy with intractable seizures (seizures that do not respond well to medication). The seizures almost always begin before the age of one and progress to include many different types. They vary in length from seconds to hours and, in severe cases, even days. Dravet syndrome is also what is called a catastrophic syndrome, where the children are very normal and healthy when they are born, but then in the second year of life they begin to delay, and sometimes decline, both physically and developmentally. It’s not really known whether the delays come from the constant seizures, the very strong medications they’re given, or the gene mutation that is usually the cause of the syndrome.
The complications of the syndrome cause the kids to become more fragile over time, developing other conditions like sleep disorders, anorexia, autistic behaviors, orthopedic conditions, and a suppressed immune system.
LI: Is there a cure for Dravet syndrome, or only treatments for symptoms?
JM: No, there is no cure. And there’s not even an effective treatment. That’s what is so frustrating about Dravet syndrome.
Even with the most effective treatments, they are usually only helpful for a few years at most. Dravet syndrome always finds its way around a treatment.
The most effective treatment involves a medication made in France that is not approved by the FDA. It has orphan drug status, which means it is approved for use in Dravet syndrome only, and it must be imported for each child individually. That medication, combined with another newly-approved drug and another that is commonly used, is the ideal treatment for Dravet syndrome right now. The problem is that all three of these drugs are very powerful with some severe side effects. This combination of meds was very helpful for Stockton for about 18 months, but he ultimately ended up in the hospital with his liver and bone marrow failing. Then he developed pneumonia and several other complications. For whatever reason, be it the syndrome or the meds, he has no desire to eat or drink so the meds became toxic. It was a very scary time for us.
Even with the most effective treatments, they are usually only helpful for a few years at most. Dravet syndrome always finds its way around a treatment. For a drug to be effective for more than a year is a great thing. Our family has tried 25 different treatments for Stockton. These drugs and diets are often used in combination with one another, at different doses. We wean him off one thing and try another. Even though a drug may not have worked, when you wean the child off, the wean itself can cause even more seizures. It’s a vicious cycle.
But now there is a treatment option that is bringing new hope to families with kids like Stockton, but it’s not an option for us living in Utah, nor is it an option in many other states, because it’s illegal.
We’ve tried a few alternative therapies, and we have tried the ketogenic diet, which is another effective treatment for many types of severe epilepsy in children. It was very effective for Stockton for nearly a year. It used to be “alternative” but has now become more mainstream. It’s an extremely strict diet where the child is kept somewhat in a state of fasting and is fed a diet that is extremely high in fat. The foods must be weighed by the gram and eaten at certain times of the day. It is very hard on the kids and their families. If the child eats even a few pieces of cereal, the seizures can break through. It can also be dangerous; Stockton’s bones became very thin and he has broken several of them. He also became very unhealthy with high levels of ammonia in his system. My point in rambling on about these two key treatments is to show how harsh they are, and they still can’t stop the seizures very well for very long.
At this point, the opportunities for treatment for Stockton fall into three categories: 1) drugs with a small chance of helping, that also come with severe side effects and the possibility of aggravating the seizures; 2) drugs used for other conditions that have a very small chance of helping Dravet syndrome; and 3) the vagal nerve stimulator, which is like a pacemaker for the brain. It requires surgery to implant and a two-year trial to see if it might help.
Charlotte went from not talking, walking or eating and having 300 seizures every week, to playing at the beach… For Stockton to be able to play at a beach… that would be amazing!
But now there is a treatment option that is bringing new hope to families with kids like Stockton, but it’s not an option for us living in Utah, nor is it an option in many other states, because it’s illegal. The treatment is a form of high-CBD cannabis (marijuana). Among kids with a severe epilepsy syndrome, 80% of children are responding positively with at least 50% improvement. That’s unheard of with any other treatment for severe epilepsy syndromes, especially with Dravet syndrome. None of the kids I know of with Dravet syndrome are seizure free, but most are definitely improving. And they are able to wean from some of their other meds that are not helping and causing negative side effects. Charlotte went from not talking, walking or eating and having 300 seizures every week, to playing at the beach, riding her bike and having only one seizure a week. For Stockton to be able to play at a beach… that would be amazing! And, at this point, it would be amazing if his seizures were reduced to even 15 per week.
LI: How often does your son have a seizure?
JM: He has between five and 30 convulsive seizures every day. That’s not counting all the little ones that last a second or two, which happen sometimes hundreds of times a day. Also, he has difficulty walking, is tube-fed, is not toilet trained, has sleep disorder, and only speaks in one-two word phrases that are hard to understand. He went from being a totally normal one-year-old to a very disabled pre-teen.
LI: How many kids in Utah have Dravet syndrome?
JM: There are probably around 20. We can’t identify all of them, because they don’t all want to be a part of our group; some are coping in their own way.
LI: When you say “we”, are you referring to an organization?
JM: Well, here in Utah we don’t have an official group for Dravet syndrome. We do have the Epilepsy Association of Utah, and then there are a couple of international groups for Dravet syndrome. When I say “we”, I am referring to our small group of moms here in Utah who have children with Dravet syndrome. We’re very casual. We have a Facebook group, we help each other out, and we get together occasionally to catch up.
When I say “we” in reference to pursuing treatment with high-CBD cannabis, I am referring to our group of moms of children with various forms of severe epilepsy. There are about 25-30 of us desperate for a way to be able to try cannabis as a treatment.
LI: How does it make you feel that Charlotte’s story has received so much attention?
JM: When I first caught wind of the treatment, I was dismissive. People always have crazy ideas for natural treatments they want to us to try—a juice, a supplement, a therapy, or whatever it might be. But then a few more amazing and legitimate stories popped up, and then the Realm of Caring went public in Colorado. They announced what they had been seeing in the children they were treating, so other parents and I began to consider looking into it. Now that the story is really becoming a big deal, we feel excited and hopeful that the treatment might actually become a possibility for our kids!
LI: Does your family receive government assistance to take care of your son’s needs?
JM: We have our primary insurance and then Medicaid for Stockton only. The insurance covers the mainstream treatments, but does not cover feeding supplies (some years it does, others it doesn’t), and they don’t pay for our imported medication. Medicaid covers these other things and then most of the copays after our insurance on the standard medications. Right now the total cost of Stockton’s treatments, before insurance and Medicaid, total approximately $6,250 per month. Our two other “typical” children also have health issues too, so we usually hit our out-of-pocket maximum by the end of May.
We also receive assistance with caring for Stockton. We have a yearly budget we can use to hire trained caregivers. Because stimulating environments and activities are big seizure triggers, Stockton is not able to leave the house and participate in life activities like other children. The caregivers stay with him at home so my husband and I can be at our other kids’ activities, go on dates, and take a family vacation with our other two children once a year.
LI: If the government assistance were to go away, how would that impact your family?
JM: Hugely. It’s actually very scary. I have estimated that without Medicaid we would be paying around $1,600-1,800 each month on average, and that is after insurance. We would also have no help in caring for Stockton; one of us would have to be with him at all times. Not having the financial assistance would be really, really hard for our family.
LI: Charlotte’s story is so compelling because the cannabis she finally was treated with has helped her incredibly. How does it make you feel knowing that this treatment is outlawed in Utah?
Now I feel like we may have really been mistaken; this plant may actually be a very good source of medication.
JM: I’m a very conservative person. I didn’t know the first thing about medical marijuana before this. I just thought it was crazy stuff, like probably most conservatives do. I knew there were some people who benefitted from it, but I thought it wasn’t worth all the research and regulation. And then there are all those that abuse the system to get high.
Now I feel like we may have really been mistaken; this plant may actually be a very good source of medication. It’s really frustrating that so many could benefit from the proper use and form of medical cannabis, but in most places they can’t have access to it without breaking the law. It’s heartbreaking—there are kids all over the country who are like Charlotte. She was possibly near death. There’s an almost 20% mortality rate with Dravet syndrome. Today there are two children with Dravet syndrome fighting for their lives in hospitals in other states; they are in critical condition because of swelling in the brain caused by constant seizing. Even when put into a drug-induced coma to “reset” the brain, they are still seizing and their bodies are shutting down. Sometimes the kids die silently in their sleep. This is called SUDEP (Sudden Unexplained Death in Epilepsy). It’s all awful, and it’s completely unfair that these kids are denied a treatment that holds such hope because some people abuse it and others are uneducated about its usefulness.
In Stockton’s case, as well as many others, the doctors don’t really know what to do to help any more. Most treatments have been exhausted, and the ones that are left or not good options at all. It’s frustrating and heartbreaking for the children who are in the worst situations. Some of their families, at this point, are so desperate that they are just throwing whatever they can in the car and driving to Colorado just to see if cannabis will work for them.
Realm of Caring, in Colorado, is still small. They receive hundreds of phone calls every day, and most of them are not able to get through because the lines are busy. Their vision is to have organizations like the Realm in every state, that are there to help the kids and others who need legitimate medical treatment with cannabis. It takes knowledge and experience to grow the high-CBD strain of cannabis, and it has to be carefully tested to make sure it is pure and consistent and the dose is correct. Right now the Charlotte’s Web waiting list is two to four months long, and that’s after receiving a medical marijuana card.
LI: What are your thoughts on the fact that the available treatment options for children such as your son are legal, but very costly and risky, and yet this other treatment option (cannabis) is not as costly or risky, but illegal?
JM: The form of cannabis that we need for our kids is actually more costly than you would think, but not more so than the combinations of prescription meds the kids are currently being prescribed. And although we are not sure the high-CBD cannabis is completely safe, it is definitely not as risky as the other drugs the kids are taking now. What most people don’t realize is that many of the drugs we give to kids with severe epilepsy have never even been approved for use in children.
How does it make me feel? Frustrated is the best word. Frustrated and anxious and sad.
LI: You said earlier that until you had personal experience with this, you were in the camp that most conservatives are, namely, being opposed to medical marijuana. Since it took a personal experience for you to have this shift, how can you help others without that experience to similarly change their view?
You can see seizures. And with the cannabis treatment you can see this miraculous change in those that it helps, and there’s no question that it’s working.
JM: We’ve been really amazed at the responses we get when we explain the situation to other people. Our friends and family members say things like “I would totally try it if he were my child!” or “I don’t know why the government doesn’t let people have access to that. It’s not any worse than being drunk.” Up until just last week, we weren’t even considering fighting for any legalization here in Utah because it is such a conservative state. Then we noticed the positive responses we were getting. This isn’t a political issue, and it isn’t an ethical issue; this is a medical and public policy issue.
Like my husband said, people’s opinions change when you have children involved. But it’s not just that. Seizures are visible. It’s not like somebody being in pain, which can’t be measured. You can see seizures. And with the cannabis treatment you can see this miraculous change in those that it helps, and there’s no question that it’s working. Also, the strains that are beneficial for epilepsy don’t include high levels of THC, so it’s not that it’s just calming the brain by making them high—it’s really working as a medication.
LI: Help our readers understand why these strains are unique.
JM: There are two main cannabinoids (THC and CBD) out of over four hundred different components in cannabis. This is what makes it hard to create something synthetic that is as effective as real plant material. The components all work together. With the two main components, the THC is what makes people high, but the CBD regulates and protects the brain without creating a high—it is non-psychoactive. What most people don’t understand is that there are many different strains of cannabis, with most of them being high in THC and low in CBD to give the user a high. The cannabis used in many forms of medical marijuana, especially the strains used to make the medicine for children with severe epilepsy, are high in CBD and very low in THC. The CBD is what we are after, and we are trying to avoid the THC because it can actually cause the seizures to become worse. THC definitely has a roll in the medical treatment of some conditions, but not epilepsy.
For us parents, [medical marijuana] is hope. It’s hope that this might be something that will make a huge difference in our child’s life.
The ideal cannabis product for Stockton and others like him is the medicine made by the Realm of Caring in Colorado. It is made from a strain of cannabis named Charlotte’s Web, after the young girl, Charlotte, who was first treated by it. It is very high in CBD and very low in THC; it is the highest ratio strain available anywhere. The Realm has bred it to be that way, and they create a tincture from it where the kids take the medicine in the form of drops of liquid or oil. They do not smoke it.
This needs to be an option for all children with severe epilepsy in every state. For us parents, it’s hope. It’s hope that this might be something that will make a huge difference in our child’s life. It’s not a cure, and it probably won’t make my son seizure-free. It may be possible that a few children with Dravet syndrome will be seizure free for a period of time. But that’s not my goal, because Stockton is a more severe case. My goal would be for him to be able to go outside and play on his Make-a-Wish basketball court, which he is usually only able to play on for 10-15 minutes without seizing and being brought back in. Other goals would be for him to go to school all day, or to be able to go to the park, or to the canyon… we try these things, but we almost always have to give him emergency medication to stop the seizures and bring him home exhausted. Honestly, at this point we can’t even give him a bath without the stimulation causing him to seize. It controls our lives, and it’s very hard on everyone.
Quality of life is what we would hope for, and a reduction in seizures enough that stimulation wouldn’t ruin his day. That’s the goal.
LI: Are you aware of any families leaving their home to find treatment for their child in Colorado? Any from Utah?
JM: There are a few families arriving in Colorado every week. None from Utah, yet. It’s hard to say, “I’m just going to move”, when my husband has a great job, we have great benefits, we have two teenagers with lives here, and we have an amazing support system. With most families, I think it depends on how severe the kids are and how easy the transition will be. The kids that are moving are in severe condition, and it’s an act of desperation for them.
LI: Because of that desperation, do you think that some parents may choose to defy the law, procure cannabis, and administer the treatment to their child?
JM: There’s talk of it, and we joke about it, but I don’t know any of us would ever do that. I’ll say this: we’re exhausting all other options first. We’re looking at legalization options, and the next thing we’d do is go to another state temporarily for a trial to see if it would work for our kids. Then if it did, we’d look at our options: do we move our family, is there a job there, how bad is my child doing, is the improvement worth that move, etc?
LI: Do you feel that the current laws criminalizing even the medical use of marijuana are unjust or unfair?
JM: I don’t know that I would say the laws themselves are unjust or unfair. Being a Mormon mom from Utah, I’m coming from a conservative point of view. It’s a drug that people abuse, even the medicinal stuff is abused. But knowing now what cannabis can do, and really understanding the potential, as well as the level of safety…. yes, it’s becoming unjust and unfair. At the same time, it’s obvious from what is happening in other states that we either need a structured medical marijuana program or we need to completely legalize. And I don’t know if I’m ready to advocate for full legalization.
LI: So you prefer an orderly change in the law.
LI: You said that marijuana can be abused, but so can all other drugs that are currently legal, especially prescription drugs. Right?
I think if Utahns were
really educated and could
see what I see, they would change their minds.
JM: Absolutely. And those are actually more dangerous. We see every day in the news how deadly the pain killers and anti-anxiety meds can be. But at least they are regulated. And they aren’t something that can be grown in the back yard. It’s such a tricky situation. I don’t know that I believe marijuana is any worse than alcohol or cigarettes, but I also don’t believe it’s “just a plant”, or that it’s a natural remedy for everything, and with no negative side effects. It is a medication that, when used correctly, has the potential to make miracles happen for many people.
I think it’s an education issue, really. I think if Utahns were really educated and could see what I see, they would change their minds.
LI: Do you feel compelled, given your personal experience, to be part of that education process? Do you think that your son’s experience, Charlotte’s story, and others, can be a catalyst for that education?
JM: Absolutely, if done correctly. We want this proposal to be perceived as mainstream, trying to make a valid, acceptable, logical change. We don’t want to be up in anyone’s face about it.
LI: Finally, if you had the attention of the Utah legislature for two minutes, what would you say?
JM: We know that this is a legitimate treatment for severe epilepsy syndromes. It’s as safe, if not safer, than the treatments our children are already being given. Our children need and deserve access to this treatment. All patients who may benefit from cannabis should have this option available to them. We need a structured program in place to offer treatment to people who need it while limiting the potential for abuse.
I’ve never in my life thought I’d be advocating for medical marijuana, but if he were your child, what would you do?