Epilepsy and Cannabis
A compound of the cannabis plant called cannabidiol appears effective against some types of epilepsy, such as Lennox-Gastaut syndrome and Dravet syndrome.
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Mesa child first to openly use cannabis oil at Camp Candlelight
Rock climbing. Archery. Dancing in the dining hall. Activities any camper would experience at a summer camp. At Camp Candlelight in Prescott, Arizona, campers have another experience in common as well: epilepsy.
Eleven-year old Mercedes Gonzales of Mesa, Arizona, attended the camp, sponsored by the Epilepsy Foundation of Arizona, for the first time this year. She also became the first child to openly use cannabis oil as treatment for her seizures while attending the summer camp, according to Stephanie Powell of Harvest of Tempe, a medical marijuana dispensary.
Powell, who is legally able to give the medical marijuana to Mercedes, said Mercedes was “quiet and excited” about her first day at camp, but that Mercedes opened up with time.
“She was always the first to volunteer to be a leader or the first to try an activity,” Powell said of Mercedes in an email correspondence. “She gave her all in everything that she did. She is truly inspiring.”
Mercedes was first diagnosed with epilepsy when she was 3 years old. She has tried 23 anti-epileptic drugs and also had a Vagus Nerve Stimulator (a pacemaker-like device that sends pulses of electricity to prevent or halt seizures) installed. But the seizures continued.
“She was a total zombie. She was so drugged out she could not stay awake,” said Yolanda Daniels, Mercedes’ grandmother and legal guardian. “There were some that made her hallucinate. One put her in the ICU for awhile.”
Daniels started researching medical marijuana and found a parent support network through Harvesting Hope, a nonprofit that specializes in helping children with pediatric epilepsy and partners with Harvest of Tempe, that helped her apply for a medical marijuana card for Mercedes.
Daniels estimated that Mercedes was having about 30 seizures a month at the time. After starting treatment with cannabidiol oil, Mercedes went for a month without a seizure. Mercedes currently takes two drugs and flower CBD, the crystal-covered buds of the marijuana plant that are dried and used as a medication, which she has been doing for a year.
Daniels said that Mercedes’ seizures are reduced and that she has started to express her emotions and make progress in school. Last year, Mercedes mastered the goals on her Individualized Education Plan.
“Her teachers are amazed,” Daniels said. “Since she started the CBD, her social skills have gone up. She’s made friends at school, she talks to people, she wants to socialize. She wouldn’t have done that a year ago.”
Mercedes also takes a nightly syringe of CBD oil that includes 1 milligram of THC, but Daniels said the treatment doesn’t make Mercedes high.
“She starts to get tired because it relaxes her body,” Daniels said. “But she can have a conversation with you, watch a movie, read a book. She can function. It’s not harming her in any way.”
Daniels said every child should have the opportunities Mercedes had at Camp Candlelight.
“I wanted other parents to know that it was OK for their kids to take this there,” Daniels said. “That was my whole reasoning in letting Mercedes go. I think she should be able to experience life just as well as anybody else.”
“Our Journey Into Medical Marijuana for Epilepsy” -Nancy
The following is our journey into using Medical Marijuana (MMJ) with our son who has CTD, autism, and epilepsy. For those of us in OH, this is a new option in the treatment of seizures and most of us have little to no experience in the medical use of this product. In talking with other families, I realize that there’s a lot of confusion, stigma, and fear, but also curiosity, surrounding the use of MMJ in the treatment of epilepsy and other conditions, so I thought I would share what I’ve learned thus far on our journey with MMJ.
Disclaimer: I’m just a mom. I am not a doctor, I am just sharing my personal experiences.
Our son, Sam, (22, CTD) was diagnosed with Complex Partial seizures at the age of 14. His team at the Comprehensive Epilepsy Center at Cincinnati Children’s Hospital have been collaborative to work with me on his treatment plan. Although the epilepsy pharmaceutical medications have helped keep his seizures manageable, I still would like to find a more natural way to control them, and they are supporting these choices. I would highly recommend getting the buy-in and support of your child’s epilepsy team before introducing Medical Marijuana or any intervention.
Sam’s team and I had been using Charlotte’s Web CBD oil without much change. In my research, I learned that a little THC can act as a catalyst for the CBD, making it more effective, but THC was illegal in OH until just recently. The new law went into effect in January 2019, and by summer, I was waiting anxiously to get Sam on the Ohio Medical Marijuana program. In October, I finally made the call to the Ohio Marijuana Card to make an appointment with their physician. Each clinic sets its office visit fees, so you may want to do some research before you schedule your first appointment. The Ohio Medical Marijuana Control Board provides a directory.
For us, the process was straight-forward and pretty easy. Just a couple of forms to fill out at the office. If your child is older than 18, you’ll need to get him or her a State ID from the license bureau. This helps with the identification process. If you have guardianship of your adult child, you’ll need proof of guardianship. If you wish to become a caregiver on behalf of your child so you can purchase on their behalf at the Dispensary, you’ll also need a valid ID.
The front office staff was very professional and patient, as my son can get a little anxious. The waiting room was bright and cheery and there was a TV playing in the corner. It looked like any other doctor’s office except for the wallpaper that covered one entire wall in marijuana leaves and the beautiful close-up pictures of marijuana plants on the walls. They are beautiful plants. They had an aromatherapy diffuser going and I wondered what was in it. The doctor was a sweet grandfatherly type who took a surprising amount of time to understand Sam’s needs. Once he felt satisfied that Sam’s proof of diagnosis was a qualifying condition under the rules and that he would possibly benefit from MMJ, he made a recommendation that we strive for a 25:1 CBD:THC ratio for Sam and then recommended that I purchase the reference guide he uses in his practice. He said for us, it’s simply going to be a matter of trial and error to find what works for him.
He then passed Sam’s chart onto a third person who entered our information into the Medical Marijuana Control Board registry. For me to act as Sam’s caregiver and purchase on his behalf at the Dispensary, we each have to have our own email addresses. This, by far, was the most challenging part of the whole process as I had no wifi service at the doctor’s office. I recommend setting this up before you get to the office!
By the time I got home, an email was waiting for both of us from the registry. To complete the process, you must follow the instructions in the email, log in, create a password, and pay the $50 fee for each person. We then had to wait a couple of weeks for a second email to confirm approval to purchase from a dispensary. In the meantime, I notified Sam’s seizure team and we came up with a plan of action to incorporate MMJ. You can take a photo of your Ohio MMJ Registry Card or print a copy to present to the dispensary, along with your ID. I found the nearest dispensary to me and began researching on their website. I quickly discovered I had no idea what to buy! I was in over my head. Sativa? Indica? Hybrid? Flower, wax, oil, patch, edibles.. What does it all mean? Here’s a little bit of the basics..
Flower is the unprocessed herb, the leaf, the flower. It comes usually by the ounce and each grower packages it a little differently but always has some sort of safety lid or closure on the container. According to the Ohio MMJ Board, the smoking of the flower is frowned upon. If you don’t smoke it, I’m not sure what you’re supposed to do with it.
Oil is used for vaping with a vape pen. Usually comes in a cartridge you would plug into a vape pen. The oil is vaporized and inhaled.
Wax is a highly concentrated product produced by extraction by butane or another solvent. It is usually heated and inhaled.
Patches are transdermal patches one would wear and the product absorbed through the skin.
Edibles refer to food products made with MMJ that’s been turned into butter or oil and cooked or baked into a product ingested by eating.
Tinctures refer to concentrated oils that you ingest sublingually (under the tongue).
There are other methods of delivery, such as capsules, but these are six of the more common ones you’ll see.
Once you decide on a delivery system that’s right for you, you’ll need to begin looking at the marijuana strains available in that form. Sam’s current delivery system is limited to edibles, patches, or tinctures, so that narrowed our search.
Chemically, marijuana is analyzed by how much Cannabidiol (or CBD) to Tetrahydrocannabinol (or THC) it contains. CBD is known for its anti-inflammatory but non-psychoactive effects whereas THC is known for its psychoactive properties. Recreational users usually seek the “high” associated with THC. However, as I previously mentioned, it’s now understood that a small amount of THC can make the CBD more effective. In Sam’s case, the doctor recommended a 25:1 CBD to THC ratio. This narrowed our search even more.
Finally, marijuana is categorized as either a Sativa, Indica, or Hybrid strain. A Sativa is usually thought of as an energizing, uplifting cerebral strain that can be used during daytime hours, while an Indica is considered more of a relaxing, sedative, body-high strain that’s used for pain relief and sleep. Think of Sativa as the sun and Indica as “In da couch.” A hybrid is simply a blend of the two. There are plenty of books you can get on the subject of marijuana strains but if you have access to the internet, the easiest way to research a strain is to just put the name followed by the word “strain” in the search box. I find that Wikileaf has pretty decent basic information about each strain, including origins and possible uses. The crazy names given to the different strains often gives you clues as to the lineage of the parent plants and their effects. Each dispensary usually posts its daily menu of what’s available on their website so you can do your research ahead of time and know exactly what you’re getting.
The dispensary has also been extremely helpful in trying to find a product that works for Sam. We are currently trying different edibles, including chocolate, gummies, and granola, all high in CBD. We’ve been able to reduce one of his regular seizure medications, Onfi, by 2 ml/day and we are seeing a slight reduction in the frequency and severity of his seizures.
The growers often have sales and set up a table at the dispensary. This is a great opportunity to get in their ear and let them know which products we need more of. One grower I spoke with was open to giving an informal talk about MMJ to the local special mom’s group I belong to. They are local growers who wish to connect with their local customers.
Of course, insurance doesn’t cover the cost of Sam’s MMJ, but as more dispensaries open and competition increases, prices will continue to come down and a wider variety of products will become available. I’m just happy we have this option for him now.
If you live in a state that has legalized medical marijuana, your child has a qualifying condition, and you believe MMJ might be helpful, don’t be afraid to talk to your child’s medical team. The more we speak up for a wider range of treatment options, the more options we’ll have.