Caring for Children With Seizures Who Use Cannabinoids

As Colorado was among the first states to allow the medical use of marijuana, neurologists there have experience treating children with seizures who use cannabinoids. Their findings and recommendations regarding parent perceptions, administrative policies, and clinical practice may be useful to pediatric neurologists in other states.

At Marijuana and Cannabinoids: A Neuroscience Research Summit, convened by the NIH, Amy Brooks-Kayal, MD, Chief of Pediatric Neurology at the University of Colorado School of Medicine and Children’s Hospital Colorado in Aurora, described her facility’s experiences caring for this patient group.

Amy Brooks-Kayal, MD

Colorado has allowed the medical use of marijuana since November 2000, while other states more recently have legalized its use. Of the 107,798 patients in Colorado who hold a card that permits medical marijuana use, 349, or about 0.3%, are minors.

Seizures are a relatively rare reason for medical marijuana use. Dr. Brooks-Kayal said that she is not aware of any neurologists or pediatricians who prescribe cannabinoids for pediatric seizures. Any physician in Colorado who has a relationship with a patient can issue a card permitting marijuana use, and two physicians are needed to issue cards to minors.

To examine the use of medical mari­juana in Colorado in children with seizure disorders, Craig Press, MD, PhD, and his coauthors conducted an observational study of 75 patients with pediatric seizures who used medical marijuana, when Dr. Press was a pediatric neurology resident at Children’s Hospital Colorado. The study was published in the April 2015 issue of Epilepsy & Behavior. “We had no ability to determine what was in the substances given, other than parental report,” Dr. Brooks-Kayal said.

Parents’ Perception of Response

Overall, 33% of parents reported a greater than 50% reduction in seizures; this group was judged to be responders, with no significant difference in response rate by seizure type. A variety of cannabis products were used, including cannabidiol alone and cannabidiol with other oral cannabis extracts (OCEs). All produced similar response rates.

However, only 30 patients had pre- and post-cannabis EEGs. Of this group, none of the cannabis responders had an improvement in their EEGs after cannabis use, whereas three of the nonresponders showed EEG improvement. “The most interesting finding that we saw was that the response rate dramatically varied depending on whether the families had moved out of state,” Dr. Brooks-Kayal said. Families who had moved to Colorado from another state for treatment were three times more likely to report response to OCEs, compared with those families who were from Colorado (47% vs 22%; odds ratio, 3.16).

This result, she said, raised the possibility that “the degree of investment that the family had made in getting this therapy might be impacting the parents’ perception of response.”

Navigating State and Federal Policies

Since state and federal policies vary, it’s hard to know what to do when a family comes to you asking about cannabis for pediatric seizure control, Dr. Brooks-Kayal said.

She therefore outlined Children’s Hospital Colorado’s approach. There, “providers do not recommend use of cannabinoids for treatment of epilepsy outside of a clinical trial,” she said.

However, families are provided with the most current information about cannabinoids. This includes being frank about the current lack of evidence regarding efficacy and safety, as well as unknowns around dosing and drug interactions. She said providers also share concerns about what’s in artisanal marijuana products, since purity and consistency of content aren’t regulated.

It’s critical for families to feel comfortable disclosing whether their children with seizures are using cannabinoids, so providers can help track safety and efficacy. Disclosure may be more likely if you reinforce that you won’t stop caring for these children if they are on cannabinoids, Dr. Brooks-Kayal said. “We strongly encourage disclosure,” and it’s a standard part of intake at every appointment to ask about cannabinoids, she said.

When cannabinoids are being used, Dr. Brooks-Kayal recommends obtaining the following tests at baseline and monthly thereafter: complete blood count, liver function tests, basic metabolic panel, and trough antiseizure medication levels. Clobazam, N-desmethylclobazam, and valproic acid levels have all been seen to change with concomitant cannabinoid use, she said.

“We ask families not to change other medications,” Dr. Brooks-Kayal said. Her practice frequently sees statusepilepticus when other medications are stopped and cannabinoids started, she said. “That is a huge risk.”

Tracking Efficacy

To help families and providers track efficacy when cannabinoids are used, Dr. Brooks-Kayal asks families to keep a seizure diary. She obtains a baseline EEG and another EEG about three months later. Since the EEG should capture seizure frequency, the length of the EEG is tailored to the patient’s seizure frequency. Dr. Brooks-Kayal often obtains 24-hour EEGs for her patients.

If it’s appropriate, families can enroll their children in an observational research study. Families can also consider participating in pharmaceutical double-blind, placebo-controlled trials. Other practical tips include standardizing the way neurologists care for children who use cannabinoids in their practice, and working in advance with hospital administrators and the inpatient pharmacy to address the use of these products for inpatients.

A 2014 Cochrane review concluded that “no reliable conclusions can be drawn at present regarding the efficacy of cannabinoids as a treatment for epilepsy,” Dr. Brooks-Kayal said. A systematic review by the American Academy of Neurology reached the same conclusion. The American Epilepsy Society, the American Academy of Pediatrics, and the American Medical Association do not recommend routine clinical use of cannabinoids for seizures, but call for additional research. “We need better data,” Dr. Brooks-Kayal said.

—Kari Oakes

As Colorado was among the first states to allow the medical use of marijuana, neurologists there have experience treating children with seizures who use cannabinoids. Their findings and recommendations regarding parent perceptions, administrative policies, and clinical practice may be useful to pediatric neurologists in other states.

At Marijuana and Cannabinoids: A Neuroscience Research Summit, convened by the NIH, Amy Brooks-Kayal, MD, Chief of Pediatric Neurology at the University of Colorado School of Medicine and Children’s Hospital Colorado in Aurora, described her facility’s experiences caring for this patient group.

Amy Brooks-Kayal, MD

Colorado has allowed the medical use of marijuana since November 2000, while other states more recently have legalized its use. Of the 107,798 patients in Colorado who hold a card that permits medical marijuana use, 349, or about 0.3%, are minors.

Seizures are a relatively rare reason for medical marijuana use. Dr. Brooks-Kayal said that she is not aware of any neurologists or pediatricians who prescribe cannabinoids for pediatric seizures. Any physician in Colorado who has a relationship with a patient can issue a card permitting marijuana use, and two physicians are needed to issue cards to minors.

To examine the use of medical mari­juana in Colorado in children with seizure disorders, Craig Press, MD, PhD, and his coauthors conducted an observational study of 75 patients with pediatric seizures who used medical marijuana, when Dr. Press was a pediatric neurology resident at Children’s Hospital Colorado. The study was published in the April 2015 issue of Epilepsy & Behavior. “We had no ability to determine what was in the substances given, other than parental report,” Dr. Brooks-Kayal said.

Parents’ Perception of Response

Overall, 33% of parents reported a greater than 50% reduction in seizures; this group was judged to be responders, with no significant difference in response rate by seizure type. A variety of cannabis products were used, including cannabidiol alone and cannabidiol with other oral cannabis extracts (OCEs). All produced similar response rates.

However, only 30 patients had pre- and post-cannabis EEGs. Of this group, none of the cannabis responders had an improvement in their EEGs after cannabis use, whereas three of the nonresponders showed EEG improvement. “The most interesting finding that we saw was that the response rate dramatically varied depending on whether the families had moved out of state,” Dr. Brooks-Kayal said. Families who had moved to Colorado from another state for treatment were three times more likely to report response to OCEs, compared with those families who were from Colorado (47% vs 22%; odds ratio, 3.16).

This result, she said, raised the possibility that “the degree of investment that the family had made in getting this therapy might be impacting the parents’ perception of response.”

Navigating State and Federal Policies

Since state and federal policies vary, it’s hard to know what to do when a family comes to you asking about cannabis for pediatric seizure control, Dr. Brooks-Kayal said.

She therefore outlined Children’s Hospital Colorado’s approach. There, “providers do not recommend use of cannabinoids for treatment of epilepsy outside of a clinical trial,” she said.

However, families are provided with the most current information about cannabinoids. This includes being frank about the current lack of evidence regarding efficacy and safety, as well as unknowns around dosing and drug interactions. She said providers also share concerns about what’s in artisanal marijuana products, since purity and consistency of content aren’t regulated.

It’s critical for families to feel comfortable disclosing whether their children with seizures are using cannabinoids, so providers can help track safety and efficacy. Disclosure may be more likely if you reinforce that you won’t stop caring for these children if they are on cannabinoids, Dr. Brooks-Kayal said. “We strongly encourage disclosure,” and it’s a standard part of intake at every appointment to ask about cannabinoids, she said.

When cannabinoids are being used, Dr. Brooks-Kayal recommends obtaining the following tests at baseline and monthly thereafter: complete blood count, liver function tests, basic metabolic panel, and trough antiseizure medication levels. Clobazam, N-desmethylclobazam, and valproic acid levels have all been seen to change with concomitant cannabinoid use, she said.

“We ask families not to change other medications,” Dr. Brooks-Kayal said. Her practice frequently sees statusepilepticus when other medications are stopped and cannabinoids started, she said. “That is a huge risk.”

Tracking Efficacy

To help families and providers track efficacy when cannabinoids are used, Dr. Brooks-Kayal asks families to keep a seizure diary. She obtains a baseline EEG and another EEG about three months later. Since the EEG should capture seizure frequency, the length of the EEG is tailored to the patient’s seizure frequency. Dr. Brooks-Kayal often obtains 24-hour EEGs for her patients.

If it’s appropriate, families can enroll their children in an observational research study. Families can also consider participating in pharmaceutical double-blind, placebo-controlled trials. Other practical tips include standardizing the way neurologists care for children who use cannabinoids in their practice, and working in advance with hospital administrators and the inpatient pharmacy to address the use of these products for inpatients.

A 2014 Cochrane review concluded that “no reliable conclusions can be drawn at present regarding the efficacy of cannabinoids as a treatment for epilepsy,” Dr. Brooks-Kayal said. A systematic review by the American Academy of Neurology reached the same conclusion. The American Epilepsy Society, the American Academy of Pediatrics, and the American Medical Association do not recommend routine clinical use of cannabinoids for seizures, but call for additional research. “We need better data,” Dr. Brooks-Kayal said.

—Kari Oakes

As Colorado was among the first states to allow the medical use of marijuana, neurologists there have experience treating children with seizures who use cannabinoids. Their findings and recommendations regarding parent perceptions, administrative policies, and clinical practice may be useful to pediatric neurologists in other states.

At Marijuana and Cannabinoids: A Neuroscience Research Summit, convened by the NIH, Amy Brooks-Kayal, MD, Chief of Pediatric Neurology at the University of Colorado School of Medicine and Children’s Hospital Colorado in Aurora, described her facility’s experiences caring for this patient group.

Amy Brooks-Kayal, MD

Colorado has allowed the medical use of marijuana since November 2000, while other states more recently have legalized its use. Of the 107,798 patients in Colorado who hold a card that permits medical marijuana use, 349, or about 0.3%, are minors.

Seizures are a relatively rare reason for medical marijuana use. Dr. Brooks-Kayal said that she is not aware of any neurologists or pediatricians who prescribe cannabinoids for pediatric seizures. Any physician in Colorado who has a relationship with a patient can issue a card permitting marijuana use, and two physicians are needed to issue cards to minors.

To examine the use of medical mari­juana in Colorado in children with seizure disorders, Craig Press, MD, PhD, and his coauthors conducted an observational study of 75 patients with pediatric seizures who used medical marijuana, when Dr. Press was a pediatric neurology resident at Children’s Hospital Colorado. The study was published in the April 2015 issue of Epilepsy & Behavior. “We had no ability to determine what was in the substances given, other than parental report,” Dr. Brooks-Kayal said.

Parents’ Perception of Response

Overall, 33% of parents reported a greater than 50% reduction in seizures; this group was judged to be responders, with no significant difference in response rate by seizure type. A variety of cannabis products were used, including cannabidiol alone and cannabidiol with other oral cannabis extracts (OCEs). All produced similar response rates.

However, only 30 patients had pre- and post-cannabis EEGs. Of this group, none of the cannabis responders had an improvement in their EEGs after cannabis use, whereas three of the nonresponders showed EEG improvement. “The most interesting finding that we saw was that the response rate dramatically varied depending on whether the families had moved out of state,” Dr. Brooks-Kayal said. Families who had moved to Colorado from another state for treatment were three times more likely to report response to OCEs, compared with those families who were from Colorado (47% vs 22%; odds ratio, 3.16).

This result, she said, raised the possibility that “the degree of investment that the family had made in getting this therapy might be impacting the parents’ perception of response.”

Navigating State and Federal Policies

Since state and federal policies vary, it’s hard to know what to do when a family comes to you asking about cannabis for pediatric seizure control, Dr. Brooks-Kayal said.

She therefore outlined Children’s Hospital Colorado’s approach. There, “providers do not recommend use of cannabinoids for treatment of epilepsy outside of a clinical trial,” she said.

However, families are provided with the most current information about cannabinoids. This includes being frank about the current lack of evidence regarding efficacy and safety, as well as unknowns around dosing and drug interactions. She said providers also share concerns about what’s in artisanal marijuana products, since purity and consistency of content aren’t regulated.

It’s critical for families to feel comfortable disclosing whether their children with seizures are using cannabinoids, so providers can help track safety and efficacy. Disclosure may be more likely if you reinforce that you won’t stop caring for these children if they are on cannabinoids, Dr. Brooks-Kayal said. “We strongly encourage disclosure,” and it’s a standard part of intake at every appointment to ask about cannabinoids, she said.

When cannabinoids are being used, Dr. Brooks-Kayal recommends obtaining the following tests at baseline and monthly thereafter: complete blood count, liver function tests, basic metabolic panel, and trough antiseizure medication levels. Clobazam, N-desmethylclobazam, and valproic acid levels have all been seen to change with concomitant cannabinoid use, she said.

“We ask families not to change other medications,” Dr. Brooks-Kayal said. Her practice frequently sees statusepilepticus when other medications are stopped and cannabinoids started, she said. “That is a huge risk.”

Tracking Efficacy

To help families and providers track efficacy when cannabinoids are used, Dr. Brooks-Kayal asks families to keep a seizure diary. She obtains a baseline EEG and another EEG about three months later. Since the EEG should capture seizure frequency, the length of the EEG is tailored to the patient’s seizure frequency. Dr. Brooks-Kayal often obtains 24-hour EEGs for her patients.

If it’s appropriate, families can enroll their children in an observational research study. Families can also consider participating in pharmaceutical double-blind, placebo-controlled trials. Other practical tips include standardizing the way neurologists care for children who use cannabinoids in their practice, and working in advance with hospital administrators and the inpatient pharmacy to address the use of these products for inpatients.

A 2014 Cochrane review concluded that “no reliable conclusions can be drawn at present regarding the efficacy of cannabinoids as a treatment for epilepsy,” Dr. Brooks-Kayal said. A systematic review by the American Academy of Neurology reached the same conclusion. The American Epilepsy Society, the American Academy of Pediatrics, and the American Medical Association do not recommend routine clinical use of cannabinoids for seizures, but call for additional research. “We need better data,” Dr. Brooks-Kayal said.

—Kari Oakes