What we share with families at Children's Colorado
By Amy Brooks-Kayal, MD, chief of pediatric neurology at Children's Hospital Colorado and professor of pediatrics, neurology and pharmaceutical sciences at the University of Colorado School of Medicine. Dr. Brooks-Kayal is a pediatric epilepsy specialist and past president of the American Epilepsy Society.
As medical providers in the neuroscience field who specialize in the care of children with epilepsy, the epilepsy program team at Children's Colorado understands first-hand the medical complexity of epilepsy and the difficult decisions facing people with epilepsy and their families. The stories of families eager to try medical marijuana are incredibly moving and completely understandable—because any parent of a child with such a life-altering condition would do everything in their power to make their child better.
Unfortunately, there is currently no clear, scientific evidence showing that marijuana improves epilepsy in children. Healthcare providers and families need comprehensive research to assess both the benefits and risks of medical marijuana with more certainty.
Current CBD studies for the treatment of epilepsy
Phase III placebo controlled studies of cannabidiol (CBD), are being completed currently. When the results from these studies are fully available, we will better understand the potential role of CBD in treatment of epilepsy. In these studies, pharmaceutical grade CBD oil, Epidiolex, is added to current seizure medication treatment regimes.
It's important to note that the CBD oil used in the clinical trials is vastly different than the artisanal cannabis products available in Colorado. In states like Colorado, where medical marijuana and its derivatives are legal, the content of CBD products is not regulated for purity or uniformity. Pharmacy-grade products like Epidiolex have followed Good Manufacturing Processes, meaning that the CBD content is measured by rigorous standards and is carefully monitored for additives or contaminants. Even the equipment used for manufacturing these products meets rigorous standards. None of this is guaranteed to be true for the artisanal products.
Do we prescribe medical marijuana?
Medical providers at Children's Colorado do not prescribe or recommend medical marijuana outside of clinical trials at this time. However, if a family chooses to explore the use of medical marijuana, we want to continue to provide care to their children. Most of these families have children with very complex medical needs, and Children's Colorado wants to continue to see them to help monitor them and the side effects they experience.
In addition, we strongly suggest baseline testing prior to the administration of medical marijuana to further aid in the objective monitoring of seizure activity.
Is marijuana helpful in the treatment of epilepsy?
Epilepsy is a common neurological disease that affects 1 in 26 people at any point in their lifetime. Today more than three million Americans, including almost 400,000 children, live with epilepsy, with one-third living with treatment-resistant seizures.
The recent stories we hear about the children who have had positive outcomes from the marijuana derivative, cannabidiol (CBD), give reason for hope and should encourage further studies.
However, any treatment decision must involve an assessment of benefit versus risk. Although some cases reported in the media suggest potential for benefit, pediatric neurologists at Children's Colorado have also seen a number of cases where CBD has had no or minimal positive effect. In some instances CBD treatment has been associated with a worsening of seizures or other serious side effects leading children to be hospitalized.
Recent statistics in epilepsy treatment
Of the more than 75 children with epilepsy who we have seen who reportedly have received a marijuana derivative for treatment of seizures, only approximately 1 in 3 have shown any improvement in their seizures based on parental reports. It is important to note that none of these improvements has been confirmed when objective testing by EEG—which records electrical signals from the brain—has been performed.
More medical marijuana research is needed
This substantial gap between the various anecdotal reports underscores the desperate need for robust scientific evidence for the potential benefit and risks of marijuana in people with epilepsy. Healthcare professionals do not currently know if marijuana is a safe and effective treatment for epilepsy, nor do we know the long-term effects that marijuana will have on learning, memory and behavior, especially in infants and young children.
However, we do know, based on both clinical data in adolescents and adults, and laboratory data in animals, that there are potential negative effects of marijuana on these critical brain functions.
Every case of epilepsy is different and the disease itself is highly variable. Certain treatments that are effective for one type of epilepsy can be ineffective for or even worsen other types of epilepsy. Scientific studies in people with epilepsy help us to understand how and why various treatments work, and for whom they are effective. Research also helps us understand the correct dose, side effects and potential interactions with other medications.
The research needed to determine if marijuana derivatives are safe and effective for the treatment of children or adults with epilepsy cannot occur without funding. At the present time it is difficult, if not impossible, to obtain federal funding to complete research on medical marijuana due to the designation of marijuana as a DEA schedule 1 drug.
It is imperative that these studies be performed by medical researchers who have expertise in pediatric epilepsy and know how to conduct clinical research studies. It's also critical that these investigators have no financial interest in the results of these studies, so that the public can have the utmost confidence that the resulting findings are valid and unbiased.
Physicians and patients and their families need all the necessary information to make the best decisions regarding care.
The importance of consulting with an epilepsy specialist
We understand first-hand the medical complexity of epilepsy and the difficult decisions facing people with epilepsy and their families. We urge all people touched by epilepsy to consult with an epilepsy specialist and explore the many existing treatment options to empower them to make informed decisions with their specialist that weighs the risks and benefits of the different treatment options.
Learn more about medical marijuana and our Neuroscience Institute.