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By Amy Brooks-Kayal (pictured left), 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 president of the American Epilepsy Society.
As medical providers who specialize in the care of children with epilepsy, the epilepsy 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.
The trouble, however, is that there is at present, no clear, scientific evidence that marijuana improves epilepsy in children. Healthcare providers and families, alike, need good research to assess with more certainty both the benefits and risks of medical marijuana.
While medical providers at Children’s Colorado don’t prescribe or recommend medical marijuana at this time, 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, help monitor them, and be on the lookout for both positive and adverse side effects.
In addition, we strongly suggest baseline testing prior to the administration of medical marijuana to further aid in the objective monitoring of seizure activity.
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.
Any treatment decision, however, 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, and in some instances CBD treatment has been associated with a worsening of seizures or other serious side effects leading children to be hospitalized.
Of the over 75 children with epilepsy whom we have seen whose parents report that they 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.
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. At present, health care professionals simply do not 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.
But 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, and certain treatments that are very 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, however, without funding, and at the present time it is very difficult, if not impossible, to obtain federal funding (such as from NIH) to complete research on medical marijuana due to the designation of marijuana as a DEA schedule 1 drug.
Further, 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, and 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.
It is critical that physicians, and patients and their families have all the necessary information to make the best decisions regarding care.
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, so that they can make informed decisions with their specialist that weighs the risks and benefits of the different treatment options.