If you have a child with epilepsy, medical cannabis could be a treatment option for controlling their seizures.
Special needs mom and registered nurse Holley Moseley answers your most pressing questions about starting a treatment protocol using CBD-rich oil.
Medical cannabis is having a major moment in the spotlight as people turn to it as a treatment for a wide range of ailments. One group benefitting from the therapeutic effects of this controversial drug in children with epilepsy.
Holley Moseley‘s daughter RayAnn has a remarkable CBD success story. From an early age, RayAnn suffered debilitating seizures, which eventually became life-threatening. After exhausting all other treatment options and desperate for a miracle, Moseley turned to CBD-rich oil, a form of medical cannabis that has helped other children suffering from uncontrolled seizures.
To Moseley’s amazement (and the amazement of RayAnn’s medical team), the CBD-rich oil helped reduce and finally eliminate RayAnn’s seizures. Today, RayAnn is seizure-free and a symbol of hope to other parents looking for solutions for their desperately ill children.
“RayAnn had run out of options and was close to death,” says Moseley, author of A Ray of Hope: A Mother’s Story of Love, Healing, and the Miracle of Medical Marijuana(Hope Grows Publishing, 2018, ISBN: 978-0-692-13847-2, $14.95). “When we learned that oil derived from a high-CBD/low-THC cannabis plant called ‘Charlotte’s Web’ was helping other special needs children like RayAnn, we knew we had to pursue it. This path was not easy or straightforward, but it was absolutely worth it in the end. “
Moseley encountered plenty of obstacles on the journey to access a quality CBD-rich oil and find a protocol that worked—during this time cannabis was illegal in the family’s home state of Florida—but ultimately RayAnn got the treatment she needed and began making strides toward better health.
After experiencing the incredible results of CBD-rich oil firsthand, Holley has become an advocate for its research and use as a treatment for sick children. She is a wealth of knowledge on everything from sourcing the product properly to dealing with “backlash” from the public and even working to pass legislation for legalization.
If you are considering treating your child with CBD-rich oil, here are some answers to your biggest questions.
What is the endocannabinoid system?
This is the biological system composed of endocannabinoids and cannabinoid receptors that are expressed throughout the entire body: the brain, organs, connective tissues, glands, and immune cells. Human and animal bodies make endocannabinoids naturally. Endocannabinoids help maintains optimal balance in the body, also known as homeostasis. Cannabidiol (CBD) is a neuro-protectant and antioxidant that can help bring the body back into homeostasis.
Is medical marijuana legal?
Unfortunately, cannabis may not be legal in the state where you currently live. It was illegal in Florida (where RayAnn lives) until the Compassionate Medical Cannabis Act was signed in 2014. Many families decide to relocate or travel to a state where medical cannabis is legal. This is why it is so important to do your research. Choose a state where your condition is covered and that also has a quality version of the product you need. Keep in mind that certain states also have parameters on THC. Further, state laws are constantly changing, so staying up to date is key.
Does CBD-rich oil create a “high” like how recreational marijuana does?
No! CBD, or cannabidiol, is considered safe and non-toxic to humans and will not cause you to experience a euphoric effect or “high.” RayAnn takes Charlotte’s Web oil, which is high in CBD, but extremely low (<0.3%) in tetrahydrocannabinol, or THC, the compound in marijuana known for its psychoactive effects.
Should my doctor help navigate the process of treating my child with CBD-rich oil?
“I can’t stress enough the importance of having a doctor involved in this process with you from the very beginning,” says Moseley. “It’s vital to secure a physician you trust, who is both qualified and willing to work with you on this treatment method. Start by checking with your current physician to see if they will assist you with ordering medical cannabis. If your physician is unable (or unwilling) to assist you, start looking for a physician who can help. Some states require that the physician take and pass a course before they are allowed to do so (for example, this is the case in Florida). Also keep in mind that some states require that two different physicians sign off for a pediatric patient, so you’ll need two doctors who will work with you.”
Are online forums a good source of information? “On one hand, it’s a good idea to connect with other parents or adults who have experience with medical cannabis for useful information,” says Moseley. “Ask them which doctors and dispensaries they recommend, and why. You may be able to find message boards or support groups online to pass on great tips to make your journey easier. But I also want to caution you: You may run into people online who will try to give you medical advice (like what dosage to give your child) based on their own experiences. While it’s okay to consider someone else’s experience, do not take the advice from someone online over that of the physicians who are treating your child. You can never be too careful, and what may work for one person won’t always work for another.
How do I get legal access?
In most states, getting access to medical marijuana requires a medical marijuana ID card. You may be surprised to find that acquiring a card can be a lengthy and sometimes complicated process. For example, these are the steps to treatment in Florida:
1. Patients must first be diagnosed with a qualifying medical condition by a qualified ordering physician.
2. Patients and their caregivers will then be entered into the Medical Marijuana Use Registry by their qualified physician.
3. Patients and their caregivers will then apply for their registry identification card, which includes:
- An approved passport-type photo
- Proof of residency
- Application fee
“While the exact requirements may not be the same in every state, having an idea of what to expect before you begin the process can be a huge help as you gather necessary documents and find physicians,” says Moseley.
How do I choose the right product?
For honest feedback on specific cannabis brands, check out reviews by real users online, ask your doctor for resources or consult with other families in your area, or call around to local medical cannabis companies or dispensaries and ask about their products. For instance, you might ask which formulas are known to be successful with your specific diagnosis. A good dispensary will be both knowledgeable and transparent. Here are a few other things to look for:
- Choose a product with a detailed label indicating the strain name, strain type, and total number of cannabinoids present.
- Be sure the brand you choose offers a batch number, a manufacturer, and an expiration date.
- Find a brand that does not contain artificial additives, preservatives, corn syrup, trans fats, or GMOs.
- The quality of cannabis products can vary depending on the conditions under which it was grown. Find a product that has been tested (look for “label tested” on the label).
What method of delivery does my child need?
Choosing the right delivery method of medical cannabis comes down to your diagnosis and what symptoms you are trying to treat. It’s important to consider what effects you are looking for, how quickly you need relief, and how long you want the effects to last. There are many different types of delivery methods to choose from, such as: vaporizing, smoking, edibles, tinctures, sprays, capsules, topicals, and transdermal patches.
“Talk with your physician to discover which method may be best for you,” says Moseley. “A lot of patients may end up using multiple products to treat different symptoms.”
How do I figure out the right dose?
“Work with your doctor or medical team to find the right dosage,” says Moseley. “Before we even began, RayAnn’s doctors had decided to collect a baseline of data from her so we would have a reference point for any side effects (good or bad) that occurred during her treatment. When it was time to start dosing her, we took a very slow and steady approach. The typical protocol for dosing with CBD-rich oil called for us to increase the dosage once every three weeks but we went even slower. Her first dose was 0.2 ml, which was barely anything. Again, check with your doctor to work out the correct dosage for your child.”
How much is this going to cost?
Unfortunately, you should expect to pay a hefty price for medical cannabis. These products can cost anywhere from hundreds to thousands of dollars a month, depending on the dispensary, the product, and the required dosage. And because insurance doesn’t cover medical cannabis, you’ll have to pay for it out of pocket.
“I like the motto, ‘Expect the worst but hope for the best,'” says Moseley. “If you plan ahead of time for a hefty price tag and in the end it costs less, you’ll just end up being overprepared, which is never a negative thing.”
How long does it take to see results?
“I can speak only to RayAnn’s progress, but we noticed positive changes within a few days of treating her with Charlotte’s Web,” says Moseley. “She had more energy, she was walking better, and her hand-eye coordination was improving drastically. It took six months before we started seeing big progress in RayAnn—like going weeks or months without a seizure, for instance. She was still having seizures once in a while, but they were always illness-related.
“As slowly as we took the addition of Charlotte’s Web to her treatment regimen, we took the removal of the pharmaceutical drugs she was on at a snail’s pace,” says Moseley. “In fact, she is still being very slowly weaned off some of them. The ability to remove any of the high-powered pharmaceuticals she has taken for years has always been a huge win for us. The fewer side effects from medicines she experiences, the more RayAnn can shine through. She has been seizure-free since October 2016 and is a healthy and active teenager, at last.”
“When you’re moving into uncharted territory, it is very normal to feel overwhelmed,” concludes Moseley. “Be sure to take it slow, learn as much as you can along the way, and be patient during the process. Medical cannabis is not a panacea, but it could be the ray of hope you’ve been seeking for your child.”
Holley Moseley is the author of A Ray of Hope: A Mother’s Story of Love, Healing, and the Miracle of Medical Marijuana. A University of South Alabama graduate, she has over 14 years of nursing experience, specializing in pediatrics and clinical research. She worked as the executive director for the Epilepsy Society of Northwest Florida and continues to be a dedicated advocate for epilepsy awareness. Holley was instrumental in passing the first cannabis legislation in the state of Florida, known as the Compassionate Medical Cannabis Act of 2014. She lives with her husband and three children in Gulf Breeze, Florida.