Literature Monitor

Using a smartphone or other personal electronic device (PED) to send text messages produces a “reproducible texting rhythm” that can be detected during video-EEG monitoring, according to Mayo Clinic researchers. In a cohort of 129 patients, this texting rhythm was detected in 27 (20.9%) patients. The rhythm existed in 28% of patients with epilepsy and 16% of those with non-epileptic seizures. The unique pattern was not present in patients when they performed independent tasks or when using a cellphone to make audio calls. The investigators concluded that the reproducible text rhythm “represents a novel technology-specific neurophysiological alteration of brain networks” and proposed that “cortical processing in the contemporary brain is uniquely activated by the use of PEDs.”  

Tatum WO, DiCiaccio B, Yelvington KH. Cortical processing during smartphone text messaging. Epilepsy Behav. 2016;59:117-121. 

Using a smartphone or other personal electronic device (PED) to send text messages produces a “reproducible texting rhythm” that can be detected during video-EEG monitoring, according to Mayo Clinic researchers. In a cohort of 129 patients, this texting rhythm was detected in 27 (20.9%) patients. The rhythm existed in 28% of patients with epilepsy and 16% of those with non-epileptic seizures. The unique pattern was not present in patients when they performed independent tasks or when using a cellphone to make audio calls. The investigators concluded that the reproducible text rhythm “represents a novel technology-specific neurophysiological alteration of brain networks” and proposed that “cortical processing in the contemporary brain is uniquely activated by the use of PEDs.”  

Tatum WO, DiCiaccio B, Yelvington KH. Cortical processing during smartphone text messaging. Epilepsy Behav. 2016;59:117-121. 

Using a smartphone or other personal electronic device (PED) to send text messages produces a “reproducible texting rhythm” that can be detected during video-EEG monitoring, according to Mayo Clinic researchers. In a cohort of 129 patients, this texting rhythm was detected in 27 (20.9%) patients. The rhythm existed in 28% of patients with epilepsy and 16% of those with non-epileptic seizures. The unique pattern was not present in patients when they performed independent tasks or when using a cellphone to make audio calls. The investigators concluded that the reproducible text rhythm “represents a novel technology-specific neurophysiological alteration of brain networks” and proposed that “cortical processing in the contemporary brain is uniquely activated by the use of PEDs.”  

Tatum WO, DiCiaccio B, Yelvington KH. Cortical processing during smartphone text messaging. Epilepsy Behav. 2016;59:117-121. 

A cross-sectional data analysis derived from the Epilepsy Birth Control Registry recently found that among nearly 800 patients who were at risk for unintended pregnancy, 69.7% were using effective contraceptive methods, which included hormonal contraceptives, intrauterine devices, tubal ligation, and vasectomy. Despite the high number of patients with epilepsy using what are generally considered highly effective forms of birth control, the efficacy of these methods in this population "remains to be proven" according to researchers from Columbia University and Beth Israel Deaconess Medical Center. The analysis suggests that there is a need for evidence-based guidelines that demonstrate the efficacy and safety of various contraceptive methods in this special population.

Herzog AG, Mandle HB, Cahill KE, Fowler KM, Hauser WA, Davis AR. Contraceptive practices of women with epilepsy: Findings of the epilepsy birth control registry. Epilepsia. 2016;57(4):630-637. 

A cross-sectional data analysis derived from the Epilepsy Birth Control Registry recently found that among nearly 800 patients who were at risk for unintended pregnancy, 69.7% were using effective contraceptive methods, which included hormonal contraceptives, intrauterine devices, tubal ligation, and vasectomy. Despite the high number of patients with epilepsy using what are generally considered highly effective forms of birth control, the efficacy of these methods in this population "remains to be proven" according to researchers from Columbia University and Beth Israel Deaconess Medical Center. The analysis suggests that there is a need for evidence-based guidelines that demonstrate the efficacy and safety of various contraceptive methods in this special population.

Herzog AG, Mandle HB, Cahill KE, Fowler KM, Hauser WA, Davis AR. Contraceptive practices of women with epilepsy: Findings of the epilepsy birth control registry. Epilepsia. 2016;57(4):630-637. 

A cross-sectional data analysis derived from the Epilepsy Birth Control Registry recently found that among nearly 800 patients who were at risk for unintended pregnancy, 69.7% were using effective contraceptive methods, which included hormonal contraceptives, intrauterine devices, tubal ligation, and vasectomy. Despite the high number of patients with epilepsy using what are generally considered highly effective forms of birth control, the efficacy of these methods in this population "remains to be proven" according to researchers from Columbia University and Beth Israel Deaconess Medical Center. The analysis suggests that there is a need for evidence-based guidelines that demonstrate the efficacy and safety of various contraceptive methods in this special population.

Herzog AG, Mandle HB, Cahill KE, Fowler KM, Hauser WA, Davis AR. Contraceptive practices of women with epilepsy: Findings of the epilepsy birth control registry. Epilepsia. 2016;57(4):630-637. 

In an attempt to protect patients with epilepsy from harm, clinicians and relatives sometimes take an overcautious view and advise them to avoid sports and exercise. A recent consensus paper from the International League Against Epilepsy (ILAE) Task Force on Sports and Epilepsy provides a more objective evaluation of the benefits and risks of exercise in this patient population, offering suggestions on issuing medical fitness certificates in various sports. The consensus paper divides sports into three categories. In group 1, the paper discusses activities that are not associated with any significant risk; category 2 includes sports that incur significant risk to persons with epilepsy but that do not pose a risk to bystanders, while the third group includes major risk factors for both patients and observers. Among the factors that ILAE takes into account when making its recommendations: the type of sport, the likelihood of a seizure occurring during participation, the type and severity of the seizures, and the "usual timing of seizure occurrence."

Capovilla G, Kaufman KR, Perucca E, Moshé SL, Arida RM. Epilepsy, seizures, physical exercise, and sports: A report from the ILAE Task Force on Sports and Epilepsy. Epilepsia. 2016;57(1):6-12.

In an attempt to protect patients with epilepsy from harm, clinicians and relatives sometimes take an overcautious view and advise them to avoid sports and exercise. A recent consensus paper from the International League Against Epilepsy (ILAE) Task Force on Sports and Epilepsy provides a more objective evaluation of the benefits and risks of exercise in this patient population, offering suggestions on issuing medical fitness certificates in various sports. The consensus paper divides sports into three categories. In group 1, the paper discusses activities that are not associated with any significant risk; category 2 includes sports that incur significant risk to persons with epilepsy but that do not pose a risk to bystanders, while the third group includes major risk factors for both patients and observers. Among the factors that ILAE takes into account when making its recommendations: the type of sport, the likelihood of a seizure occurring during participation, the type and severity of the seizures, and the "usual timing of seizure occurrence."

Capovilla G, Kaufman KR, Perucca E, Moshé SL, Arida RM. Epilepsy, seizures, physical exercise, and sports: A report from the ILAE Task Force on Sports and Epilepsy. Epilepsia. 2016;57(1):6-12.

In an attempt to protect patients with epilepsy from harm, clinicians and relatives sometimes take an overcautious view and advise them to avoid sports and exercise. A recent consensus paper from the International League Against Epilepsy (ILAE) Task Force on Sports and Epilepsy provides a more objective evaluation of the benefits and risks of exercise in this patient population, offering suggestions on issuing medical fitness certificates in various sports. The consensus paper divides sports into three categories. In group 1, the paper discusses activities that are not associated with any significant risk; category 2 includes sports that incur significant risk to persons with epilepsy but that do not pose a risk to bystanders, while the third group includes major risk factors for both patients and observers. Among the factors that ILAE takes into account when making its recommendations: the type of sport, the likelihood of a seizure occurring during participation, the type and severity of the seizures, and the "usual timing of seizure occurrence."

Capovilla G, Kaufman KR, Perucca E, Moshé SL, Arida RM. Epilepsy, seizures, physical exercise, and sports: A report from the ILAE Task Force on Sports and Epilepsy. Epilepsia. 2016;57(1):6-12.

Patients with epilepsy are more likely to have difficulty accessing health care services, according to the National Health Interview Survey during 2010 and 2013. The survey, which included data from more than 27,000 and 34,000 adults in these respective years, revealed that patients with epilepsy had more problems affording medication (relative risk [RR]: 2.40), gaining access to mental health services (RR = 3.23), getting eyeglasses (RR= 2.36), and obtaining dental services (RR = 1.98). Similarly, this patient population was more than five times as likely to report transportation problems as a barrier to obtaining health care services. The survey data suggested that the relative lack of private health insurance may have contributed to these disparities (RR = 0.58).

Thurman DJ, Kobau R, Luo Y-H, Helmers SL, Zack MM. Health-care access among adults with epilepsy: The U.S. National Health Interview Survey, 2010 and 2013. Epilepsy Behav. 2016;55:184-188.

Patients with epilepsy are more likely to have difficulty accessing health care services, according to the National Health Interview Survey during 2010 and 2013. The survey, which included data from more than 27,000 and 34,000 adults in these respective years, revealed that patients with epilepsy had more problems affording medication (relative risk [RR]: 2.40), gaining access to mental health services (RR = 3.23), getting eyeglasses (RR= 2.36), and obtaining dental services (RR = 1.98). Similarly, this patient population was more than five times as likely to report transportation problems as a barrier to obtaining health care services. The survey data suggested that the relative lack of private health insurance may have contributed to these disparities (RR = 0.58).

Thurman DJ, Kobau R, Luo Y-H, Helmers SL, Zack MM. Health-care access among adults with epilepsy: The U.S. National Health Interview Survey, 2010 and 2013. Epilepsy Behav. 2016;55:184-188.

Patients with epilepsy are more likely to have difficulty accessing health care services, according to the National Health Interview Survey during 2010 and 2013. The survey, which included data from more than 27,000 and 34,000 adults in these respective years, revealed that patients with epilepsy had more problems affording medication (relative risk [RR]: 2.40), gaining access to mental health services (RR = 3.23), getting eyeglasses (RR= 2.36), and obtaining dental services (RR = 1.98). Similarly, this patient population was more than five times as likely to report transportation problems as a barrier to obtaining health care services. The survey data suggested that the relative lack of private health insurance may have contributed to these disparities (RR = 0.58).

Thurman DJ, Kobau R, Luo Y-H, Helmers SL, Zack MM. Health-care access among adults with epilepsy: The U.S. National Health Interview Survey, 2010 and 2013. Epilepsy Behav. 2016;55:184-188.

Among 207 patients with epilepsy, 43% reported clinically significant insomnia, while 51% had at least mild insomnia according to investigators from the University of Virginia. Their results, derived from an Insomnia Severity Index survey, also found that younger patients, those with a shorter duration of epilepsy, and patients taking sedatives or hypnotics, reported more severe insomnia. Similarly, patients with delayed sleep timing and depression were more likely to experience more severe insomnia. However, even after researchers factored out these covariates, they found that more severe insomnia was significantly associated with seizures and poorer quality of life.

Quigg M, Gharai S, Ruland J, et al. Insomnia in epilepsy is associated with continuing seizures and worse quality of life. Epilepsy Res. 2016;122:91-96.

Among 207 patients with epilepsy, 43% reported clinically significant insomnia, while 51% had at least mild insomnia according to investigators from the University of Virginia. Their results, derived from an Insomnia Severity Index survey, also found that younger patients, those with a shorter duration of epilepsy, and patients taking sedatives or hypnotics, reported more severe insomnia. Similarly, patients with delayed sleep timing and depression were more likely to experience more severe insomnia. However, even after researchers factored out these covariates, they found that more severe insomnia was significantly associated with seizures and poorer quality of life.

Quigg M, Gharai S, Ruland J, et al. Insomnia in epilepsy is associated with continuing seizures and worse quality of life. Epilepsy Res. 2016;122:91-96.

Among 207 patients with epilepsy, 43% reported clinically significant insomnia, while 51% had at least mild insomnia according to investigators from the University of Virginia. Their results, derived from an Insomnia Severity Index survey, also found that younger patients, those with a shorter duration of epilepsy, and patients taking sedatives or hypnotics, reported more severe insomnia. Similarly, patients with delayed sleep timing and depression were more likely to experience more severe insomnia. However, even after researchers factored out these covariates, they found that more severe insomnia was significantly associated with seizures and poorer quality of life.

Quigg M, Gharai S, Ruland J, et al. Insomnia in epilepsy is associated with continuing seizures and worse quality of life. Epilepsy Res. 2016;122:91-96.

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

Health care professionals and patients with epilepsy lack a common understanding of seizure clusters, according to research published in the April issue of Epilepsy & Behavior. Physicians and patients have differing ideas about the diagnosis, impact, and management of seizure clusters, and communication between these groups consequently is difficult. Investigators also cite a gap in the understanding of seizure clusters among health care providers as a group, and among patients as a group.

“An accepted, simple working definition of [seizure] clusters is needed that can be translated into consumer-friendly language,” said, Janice Buelow, RN, PhD, Associate Professor Emeritus at Indiana University School of Nursing in Annapolis, and colleagues. “This requires a common clinical lexicon to describe seizure clusters to facilitate communication among consumers, as well as between consumers and clinicians.” She defines consumers as including patients and caregivers.

Seizure clusters are not part of the International League Against Epilepsy Commission on Classification and Terminology, and neurologists have used inconsistent terminology to describe these events. Dr. Buelow and colleagues sought to describe and compare physicians’ and patients’ understanding of seizure clusters and to determine how these groups communicate about them. They reviewed websites with community forums such as those of the Epilepsy Foundation, Seizure Tracker, and Patients Like Me to describe patients’ understanding of seizure clusters. To describe clinicians’ understanding of seizure clusters, the investigators searched the literature for relevant articles.

Posts on community forums indicated that patients were confused about the meaning of a diagnosis of seizure clusters. Some patients thought that their physicians did not believe them when they reported having seizure clusters, which could reflect “a larger communication gap,” said Dr. Buelow. Patients also lacked confidence that physicians acknowledged their concerns about the events.

Clinicians viewed seizure clusters as a clinical event and discussed them in terms of frequency, duration, and appropriate treatment. In contrast, patients’ definitions focused on how seizure clusters affected their lives and showed little understanding of frequency.

The investigators observed that patients described seizure clusters as different from their usual seizures. Patients also remarked that a pattern of seizure clusters has a significant impact on their daily lives. Recurrent seizures contribute to a heightened sense of severity among patients, and misperceptions about the distinction between seizure clusters and status epilepticus can cause confusion, said the researchers.

The literature search revealed a lack of consensus among neurologists about what constitutes a seizure cluster. The literature also contained few discussions about risk factors, in contrast with community forums. Physicians’ discussions of severity focused on complications of seizure clusters such as status epilepticus or postictal psychosis. Professional discussions of the impact of seizure clusters mentioned progression to status epilepticus, emergency room visits, and hospital admissions rather than their influence on daily life. Neither patients nor physicians discussed how the groups communicate about seizure clusters.

—Erik Greb

Health care professionals and patients with epilepsy lack a common understanding of seizure clusters, according to research published in the April issue of Epilepsy & Behavior. Physicians and patients have differing ideas about the diagnosis, impact, and management of seizure clusters, and communication between these groups consequently is difficult. Investigators also cite a gap in the understanding of seizure clusters among health care providers as a group, and among patients as a group.

“An accepted, simple working definition of [seizure] clusters is needed that can be translated into consumer-friendly language,” said, Janice Buelow, RN, PhD, Associate Professor Emeritus at Indiana University School of Nursing in Annapolis, and colleagues. “This requires a common clinical lexicon to describe seizure clusters to facilitate communication among consumers, as well as between consumers and clinicians.” She defines consumers as including patients and caregivers.

Seizure clusters are not part of the International League Against Epilepsy Commission on Classification and Terminology, and neurologists have used inconsistent terminology to describe these events. Dr. Buelow and colleagues sought to describe and compare physicians’ and patients’ understanding of seizure clusters and to determine how these groups communicate about them. They reviewed websites with community forums such as those of the Epilepsy Foundation, Seizure Tracker, and Patients Like Me to describe patients’ understanding of seizure clusters. To describe clinicians’ understanding of seizure clusters, the investigators searched the literature for relevant articles.

Posts on community forums indicated that patients were confused about the meaning of a diagnosis of seizure clusters. Some patients thought that their physicians did not believe them when they reported having seizure clusters, which could reflect “a larger communication gap,” said Dr. Buelow. Patients also lacked confidence that physicians acknowledged their concerns about the events.

Clinicians viewed seizure clusters as a clinical event and discussed them in terms of frequency, duration, and appropriate treatment. In contrast, patients’ definitions focused on how seizure clusters affected their lives and showed little understanding of frequency.

The investigators observed that patients described seizure clusters as different from their usual seizures. Patients also remarked that a pattern of seizure clusters has a significant impact on their daily lives. Recurrent seizures contribute to a heightened sense of severity among patients, and misperceptions about the distinction between seizure clusters and status epilepticus can cause confusion, said the researchers.

The literature search revealed a lack of consensus among neurologists about what constitutes a seizure cluster. The literature also contained few discussions about risk factors, in contrast with community forums. Physicians’ discussions of severity focused on complications of seizure clusters such as status epilepticus or postictal psychosis. Professional discussions of the impact of seizure clusters mentioned progression to status epilepticus, emergency room visits, and hospital admissions rather than their influence on daily life. Neither patients nor physicians discussed how the groups communicate about seizure clusters.

—Erik Greb

Health care professionals and patients with epilepsy lack a common understanding of seizure clusters, according to research published in the April issue of Epilepsy & Behavior. Physicians and patients have differing ideas about the diagnosis, impact, and management of seizure clusters, and communication between these groups consequently is difficult. Investigators also cite a gap in the understanding of seizure clusters among health care providers as a group, and among patients as a group.

“An accepted, simple working definition of [seizure] clusters is needed that can be translated into consumer-friendly language,” said, Janice Buelow, RN, PhD, Associate Professor Emeritus at Indiana University School of Nursing in Annapolis, and colleagues. “This requires a common clinical lexicon to describe seizure clusters to facilitate communication among consumers, as well as between consumers and clinicians.” She defines consumers as including patients and caregivers.

Seizure clusters are not part of the International League Against Epilepsy Commission on Classification and Terminology, and neurologists have used inconsistent terminology to describe these events. Dr. Buelow and colleagues sought to describe and compare physicians’ and patients’ understanding of seizure clusters and to determine how these groups communicate about them. They reviewed websites with community forums such as those of the Epilepsy Foundation, Seizure Tracker, and Patients Like Me to describe patients’ understanding of seizure clusters. To describe clinicians’ understanding of seizure clusters, the investigators searched the literature for relevant articles.

Posts on community forums indicated that patients were confused about the meaning of a diagnosis of seizure clusters. Some patients thought that their physicians did not believe them when they reported having seizure clusters, which could reflect “a larger communication gap,” said Dr. Buelow. Patients also lacked confidence that physicians acknowledged their concerns about the events.

Clinicians viewed seizure clusters as a clinical event and discussed them in terms of frequency, duration, and appropriate treatment. In contrast, patients’ definitions focused on how seizure clusters affected their lives and showed little understanding of frequency.

The investigators observed that patients described seizure clusters as different from their usual seizures. Patients also remarked that a pattern of seizure clusters has a significant impact on their daily lives. Recurrent seizures contribute to a heightened sense of severity among patients, and misperceptions about the distinction between seizure clusters and status epilepticus can cause confusion, said the researchers.

The literature search revealed a lack of consensus among neurologists about what constitutes a seizure cluster. The literature also contained few discussions about risk factors, in contrast with community forums. Physicians’ discussions of severity focused on complications of seizure clusters such as status epilepticus or postictal psychosis. Professional discussions of the impact of seizure clusters mentioned progression to status epilepticus, emergency room visits, and hospital admissions rather than their influence on daily life. Neither patients nor physicians discussed how the groups communicate about seizure clusters.

—Erik Greb

A new analysis of registry data from European countries does not support an association between prenatal exposure to lamotrigine monotherapy and risk of orofacial cleft and clubfoot, in contrast to signals from previous studies of the antiepileptic drug. The analysis was published online ahead of print April 6 in Neurology.

Helen Dolk, DrPH, Professor of Epidemiology and Health Services Research and Head of the Center for Maternal, Fetal, and Infant Research at the University of Ulster in Coleraine, Northern Ireland, and her colleagues analyzed data from 10.1 million births exposed to antiepileptic drugs, including lamotrigine as a monotherapy, during the first trimester between 1995 and 2011. The births were recorded in 21 population-based registries from 16 European countries. The outcomes of interest were major congenital malformations in general, as well as orofacial clefts and clubfoot.

Helen Dolk, DrPH

Assessment of all antiepileptic drug-exposed congenital malformation registrations revealed that 12% of pregnant registrants were exposed to lamotrigine monotherapy. An additional 7% were exposed to lamotrigine as part of polytherapy. A total of 77.1% of pregnant women exposed to lamotrigine monotherapy had a diagnosis of epilepsy. The proportion of lamotrigine monotherapy exposures increased during the study period.

A total of 147 babies exposed to lamotrigine monotherapy with congenital malformations not attributable to chromosomal irregularities were identified from the total sample. The odds ratio for having a child with orofacial clefts after exposure to lamotrigine monotherapy was 1.31. Based on these data, the authors estimated that exposure to lamotrigine would result in orofacial clefts in fewer than one in every 550 exposed babies.

The odds ratio for having a child with clubfoot after exposure to lamotrigine monotherapy was 1.83. Although the study results confirmed the statistically significant signal for an overall excess risk of clubfoot found in a previous study that analyzed births during 1995–2005, the investigators could not reproduce this result in an independent study population of 6.3 million births during 2005–2011. Lamotrigine monotherapy was not associated with significant differences in the risk for developing any other congenital malformations, the investigators said.

—William Perlman

A new analysis of registry data from European countries does not support an association between prenatal exposure to lamotrigine monotherapy and risk of orofacial cleft and clubfoot, in contrast to signals from previous studies of the antiepileptic drug. The analysis was published online ahead of print April 6 in Neurology.

Helen Dolk, DrPH, Professor of Epidemiology and Health Services Research and Head of the Center for Maternal, Fetal, and Infant Research at the University of Ulster in Coleraine, Northern Ireland, and her colleagues analyzed data from 10.1 million births exposed to antiepileptic drugs, including lamotrigine as a monotherapy, during the first trimester between 1995 and 2011. The births were recorded in 21 population-based registries from 16 European countries. The outcomes of interest were major congenital malformations in general, as well as orofacial clefts and clubfoot.

Helen Dolk, DrPH

Assessment of all antiepileptic drug-exposed congenital malformation registrations revealed that 12% of pregnant registrants were exposed to lamotrigine monotherapy. An additional 7% were exposed to lamotrigine as part of polytherapy. A total of 77.1% of pregnant women exposed to lamotrigine monotherapy had a diagnosis of epilepsy. The proportion of lamotrigine monotherapy exposures increased during the study period.

A total of 147 babies exposed to lamotrigine monotherapy with congenital malformations not attributable to chromosomal irregularities were identified from the total sample. The odds ratio for having a child with orofacial clefts after exposure to lamotrigine monotherapy was 1.31. Based on these data, the authors estimated that exposure to lamotrigine would result in orofacial clefts in fewer than one in every 550 exposed babies.

The odds ratio for having a child with clubfoot after exposure to lamotrigine monotherapy was 1.83. Although the study results confirmed the statistically significant signal for an overall excess risk of clubfoot found in a previous study that analyzed births during 1995–2005, the investigators could not reproduce this result in an independent study population of 6.3 million births during 2005–2011. Lamotrigine monotherapy was not associated with significant differences in the risk for developing any other congenital malformations, the investigators said.

—William Perlman

A new analysis of registry data from European countries does not support an association between prenatal exposure to lamotrigine monotherapy and risk of orofacial cleft and clubfoot, in contrast to signals from previous studies of the antiepileptic drug. The analysis was published online ahead of print April 6 in Neurology.

Helen Dolk, DrPH, Professor of Epidemiology and Health Services Research and Head of the Center for Maternal, Fetal, and Infant Research at the University of Ulster in Coleraine, Northern Ireland, and her colleagues analyzed data from 10.1 million births exposed to antiepileptic drugs, including lamotrigine as a monotherapy, during the first trimester between 1995 and 2011. The births were recorded in 21 population-based registries from 16 European countries. The outcomes of interest were major congenital malformations in general, as well as orofacial clefts and clubfoot.

Helen Dolk, DrPH

Assessment of all antiepileptic drug-exposed congenital malformation registrations revealed that 12% of pregnant registrants were exposed to lamotrigine monotherapy. An additional 7% were exposed to lamotrigine as part of polytherapy. A total of 77.1% of pregnant women exposed to lamotrigine monotherapy had a diagnosis of epilepsy. The proportion of lamotrigine monotherapy exposures increased during the study period.

A total of 147 babies exposed to lamotrigine monotherapy with congenital malformations not attributable to chromosomal irregularities were identified from the total sample. The odds ratio for having a child with orofacial clefts after exposure to lamotrigine monotherapy was 1.31. Based on these data, the authors estimated that exposure to lamotrigine would result in orofacial clefts in fewer than one in every 550 exposed babies.

The odds ratio for having a child with clubfoot after exposure to lamotrigine monotherapy was 1.83. Although the study results confirmed the statistically significant signal for an overall excess risk of clubfoot found in a previous study that analyzed births during 1995–2005, the investigators could not reproduce this result in an independent study population of 6.3 million births during 2005–2011. Lamotrigine monotherapy was not associated with significant differences in the risk for developing any other congenital malformations, the investigators said.

—William Perlman