Mackenzie Carpenter Cervenka

Background/Objectives: Drug-resistant epilepsy affects up to one-third of patients with epilepsy and is associated with higher morbidity, mortality, trauma events, psychosocial challenges, and decline in quality of life. In Latin America, disease burden is high and access to advanced therapies remains limited. Ketogenic Diet Therapy (KDT) has been shown to be beneficial in adults, but its implementation requires standardized protocols and experienced multidisciplinary teams. This study aimed to develop practical, evidence-based recommendations to guide the indication, implementation, and follow-up of KDT in adults with drug-resistant epilepsy through expert consensus in Colombia. Methods: A modified version of the Nominal Group Technique was used to develop, discuss, and vote on management concepts. Clinical questions were structured using the PICO framework. Literature searches were conducted in PubMed and EMBASE for articles published since 2015, and the evidence was integrated with the experience of a multidisciplinary expert panel. Results: Twelve recommendations were issued, covering commercial formulas, induction and follow-up protocols, individualized dietary interventions, safety, diagnostic support, nutritional supplementation, and drug-diet interactions. The consensus highlights the need for interdisciplinary teams, structured education, early adherence strategies, and close follow-up, and the role of enteral emergency formulas in intensive care settings. Conclusions: Evidence around KDT shows it can be implemented safely as an adjunctive treatment for adults with drug-resistant epilepsy and is reasonable to consider following the failure of two adequate antiseizure medications. Structured implementation may reduce seizure frequency, improve quality of life, and reduce the pharmacological burden. Multicenter prospective studies are needed to further assess efficacy, safety, and resource utilization. These recommendations contribute to closing the gap between evidence and clinical practice.

Ketogenic dietary therapies (KDTs) are increasingly used worldwide as a non‐pharmacological treatment for epilepsy, including among people of childbearing potential. In many cases, KDTs allow for the reduction of antiseizure medications (ASMs) and lower drug exposure during pregnancy. However, limited evidence on maternal tolerability, fetal safety, and lactation outcomes has led to reluctance among healthcare providers to recommend KDTs during pregnancy. To inform evidence‐based counseling, it is crucial to systematically collect data on maternal and offspring outcomes following KDT exposure. Over the past 25 years, international epilepsy pregnancy registries have provided robust data on the teratogenic risks of ASM exposure. Yet, no standardized dataset currently exists for documenting KDT exposure during pregnancy and lactation. The International League Against Epilepsy Ketogenic Dietary Treatments Task Force conducted a structured consensus process to develop the first international core dataset designed to capture maternal KDT exposure within existing pregnancy registries. This dataset provides a standardized, pragmatic framework for recording diet type, exposure duration, maternal‐fetal outcomes, and lactation parameters. By harmonizing data collection across registries, this initiative aims to transform isolated case reports into aggregated, high‐quality multicenter evidence, closing a critical knowledge gap. Incorporating these standardized questions into epilepsy pregnancy registries represents both a scientific necessity and a call to action to ensure safer, evidence‐based care for women with epilepsy and their children. Plain Language Summary: More people are using ketogenic diets as a treatment for epilepsy around the world, including during pregnancy. It is not yet known if these diets are safe for mothers and babies during pregnancy and breastfeeding. Collecting standardized information about pregnancy outcomes in existing registries will inform us about the safety and effectiveness of these diets. The authors, who are either members of the International League Against Epilepsy dietary task force or specifically chosen by them for their expertise, followed a consensus process to suggest the addition of key standardized questions to the existing international pregnancy outcome registries for epilepsy.

Features Affecting Treatment Decisions and Outcome in Refractory Status Epilepticus Damien C, Torcida Sedano N, Depondt C, Legros B, Gaspard N. Epilepsia . 2025;66(8):2779-2789. Objective: Refractory status epilepticus (RSE) is associated with worse outcomes than responsive established status epilepticus (SE). Guidelines recommend that refractory convulsive SE should be treated with continuous intravenous anesthetic drugs (CIVADs). Many cases of nonconvulsive SE are not treated with CIVADs, and the use of anesthesia might be associated with increased mortality. The factors leading to the decision to use anesthesia and how these might affect outcome are still largely unknown. Our goal was to identify features of refractory SE associated with treatment choices and outcome. Methods: A single-center, retrospective study was conducted of all consecutive patients with RSE admitted to a tertiary center between January 2015 and December 2020. We collected demographic and clinical variables at SE onset and at time of third-line treatment, including ictal burden during the hour preceding the administration of the third-line treatment. The primary outcome measure was the decision to use CIVADs as third-line treatment. Secondary outcome measures were in-hospital mortality and functional outcome at discharge. Results: One hundred sixty-one RSE episodes were included. Of these, 29 (18%) received CIVADs as third-line treatment and 61 (38%) died. The type of third-line treatment was not associated with mortality. CIVADs were more likely to be used with higher ictal burden, fewer comorbidities, a lower Glasgow Coma Scale (GCS) score at time of third-line administration, and in the absence of history of epilepsy (odds ratio [OR] = 1.03, 0.76, .66, and .25, respectively). Multivariable analyses also identified comorbidities, an acute etiology, and lower GCS score at time of third-line administration as risk factors of mortality (OR = 1.43, .09, .28, and .80, respectively). Ictal burden was not associated with outcome. Significance: Ictal burden, semiology, and consciousness at time of third-line treatment are associated with the decision to use CIVADs in SE. Semiology and consciousness at time of third-line treatment are also associated with mortality.

Prescribing Errors in Hospitalized Patients on the Ketogenic Diet Yen CY, Kronisch L, Whitley K, Carew B, Zaldana A, Diaz-Medina G, Katyayan A, Cokley JA. American Journal of Health-System Pharmacy . 2025. Purpose: A ketogenic diet (KD) is recommended as a nonpharmacological treatment option in pediatric patients with epilepsy. Prescribing errors for these patients can result in inadvertent carbohydrate exposure, increasing the risk of loss of ketosis and breakthrough seizures. The objective of this study was to evaluate the incidence of inadvertent carbohydrate exposure in hospitalized children on the traditional KD. Methods: This was a retrospective cohort study of patients with epilepsy receiving KD therapy while admitted to the hospital. Patients 18 years of age or younger diagnosed with epilepsy and/or intractable epilepsy, receiving antiseizure medications on the traditional KD or KD total parenteral nutrition, or with GLUT-1 genetic disorder were included. The primary endpoint was the incidence of patient admissions with unintended orders for carbohydrate-containing medications during hospitalization. Results: A total of 42 patients accounting for 66 inpatient admissions were included in this study. The total incidence of admissions with an inadvertent carbohydrate-containing medication order placed was 52% for intravenous (IV) medications and 64% for oral medications. Patients averaged 2 carbohydrate-containing orders per admission for both IV and oral medications. The most commonly prescribed carbohydrate-containing medications were given at least once before being discontinued. Of the IV medications documented in this study, 6 were premix products diluted in carbohydrate-containing solutions and did not have an alternative file built to facilitate dilution in normal saline. Conclusion: Because of their restricted carbohydrate allowance and the possibility of carbohydrate-containing product excipients, patients on the KD are at increased risk for receiving inappropriate carbohydrate containing medications during hospital admissions.

Objective: Ketogenic diet therapies (KDTs) are increasingly used as a treatment for people with epilepsy of childbearing potential (PWECP) and glucose transporter type 1 deficiency syndrome (Glut1DS). The aim of this study was to collect information on clinical experience with KDT during pregnancy and lactation in these populations. Methods: Between December 2023 and June 2024, an online survey was widely circulated to healthcare professionals (HCPs) working with PWECP and people with Glut1DS of childbearing potential on KDT. The survey explored KDT use during pregnancy and lactation. Only HCPs working with patients who expressed interest in KDT and who were planning to become pregnant or were already pregnant were invited to complete the survey. Results: Thirty‐five HCPs had counseled patients about whether to follow KDT during pregnancy. Sixty percent of HCPs did not recommend KDT during pregnancy. Key concerns included a lack of expertise with KDT use during pregnancy, insufficient data on the safety of KDT use during pregnancy, and uncertainty about the impact on fetal development. Among the HCPs (40%) who recommended KDT during pregnancy, there was no consensus regarding the version of KDT or optimal macronutrient composition. Even fewer HCPs ( n = 5) had provided counseling on diet adaptation during lactation. Low Glycemic Index Treatment and the modified Atkins diet were most recommended. Blood ketone monitoring was unanimously recommended during lactation. Significance: Based on the survey results, HCPs have variable opinions about the safety, management, ideal diet, and levels of ketosis for people with epilepsy (PWE) and Glut1DS on KDT during pregnancy and lactation. There was consensus about monitoring ketosis levels and ensuring micronutrient supplementation. Patient enrollment in pregnancy registries that capture KDT use is crucial to support future research and expand knowledge about the safety of KDT so HCPs and PWE or Glut1DS can make informed decisions about their treatment. Plain Language Summary: Most healthcare providers (HCPs) did not advise ketogenic diet therapy (KDT) for epilepsy during pregnancy, though some noted exceptions for glucose transporter type 1 deficiency syndrome. Their main concerns were not having enough information about safety for the parent and fetus and their own lack of experience using KDT during pregnancy. The 40% of HCPs who supported the use of KDT during pregnancy stressed the need for personalized care and close monitoring to reduce risks. Few HCPs have used KDT during lactation. Experts advised using more flexible versions of KDT during lactation. More research is needed.

We propose and prioritize important outcome domains that should be considered for future research investigating long‐term outcomes (LTO) after new onset refractory status epilepticus (NORSE). The study was led by the international NORSE Institute LTO Working Group. First, literature describing the LTO of NORSE survivors was identified using a PubMed search and summarized to identify knowledge gaps. Subsequently, a consensus‐building process was performed to prioritize and rank important LTO domains for further research. The prioritization of LTO domains was qualitative, enabling the expert panel to generate ideas, share opinions, and provide reasons for the rankings. A second round took place to allow expansion and agreement regarding specific details for each domain. Outcomes were classified into eight main domains: (1) Function: Neuropsychological, Neurological (other than seizures), and Psychiatric (mood and behavior); (2) Quality of Life; (3) Epilepsy; (4) Nonneurological (medical); (5) Social; (6) Caregiver Burden; (7) Long‐Term Mortality; and (8) Health Care System Impact. In addition, the working group suggested obtaining outcome measures for each domain at 6 months and 1 year after discharge and annually thereafter until stability has been reached. There are no currently established time frames set for when LTO in NORSE begin or plateau, and previously there existed no consensus regarding which LTO should be considered. This consensus process identifies and recommends NORSE LTO domains that should be considered in future research studies to provide more consistent results that can be compared between studies. Survivors of NORSE should be evaluated serially and at fixed points over time to maximize our understanding of the recovery trajectory for all LTO domains. Establishing reliable and standardized data describing LTO (beyond seizures) after NORSE will support discussions with families during the acute stages, prognostication, the development of targeted management strategies for survivors, and future comparative research globally helping to identify biomarkers that may predict LTO.

Objective: Levetiracetam (LEV) is an antiseizure medication that is mainly excreted by the kidneys. Due to its low teratogenic risk, LEV is frequently prescribed for women with epilepsy (WWE). Physiological changes during gestation affect the pharmacokinetic characteristics of LEV. The goal of our study was to characterize the changes in LEV clearance during pregnancy and the postpartum period, to better plan an LEV dosing paradigm for pregnant women. Methods: This retrospective observational study incorporated a cohort of women who were followed up at the epilepsy in pregnancy clinic at Tel Aviv Sourasky Medical Center during the years 2020-2023. Individualized target concentrations of LEV and an empirical postpartum taper were used for seizure control and to reduce toxicity likelihood. Patient visits took place every 1-2 months and included a review of medication dosage, trough LEV blood levels, week of gestation and LEV dose at the time of level measurement, and seizure diaries. Total LEV concentration/dose was calculated based on LEV levels and dose as an estimation of LEV clearance. Results: A total of 263 samples were collected from 38 pregnant patients. We observed a decrease in LEV concentration/dose (C/D) as the pregnancy progressed, followed by an abrupt postpartum increase. Compared to the third trimester, the most significant C/D decrease was observed at the first trimester (slope = .85), with no significant change in the second trimester (slope = .11). A significant increase in C/D occurred postpartum (slope = 5.23). LEV dose was gradually increased by 75% during pregnancy compared to preconception. Average serum levels (mu g/mL) decreased during pregnancy. During the postpartum period, serum levels increased, whereas the LEV dose was decreased by 24%, compared to the third trimester. Significance: LEV serum level monitoring is essential for WWE prior to and during pregnancy as well as postpartum. Our data contribute to determining a rational treatment and dosing paradigm for LEV use during both pregnancy and the postpartum period.

Lifestyle interventions are strategies used to self‐manage medical conditions, such as epilepsy, and often complement traditional pharmacologic and surgical therapies. The need for integrating evidence‐based lifestyle interventions into mainstream medicine for the treatment of epilepsy is evident given that despite the availability of a multitude of treatments with medications and surgical techniques, a significant proportion of patients have refractory seizures, and even those who are seizure‐free report significant adverse effects with current treatments. Although the evidence base for complementary medicine is less robust than it is for traditional forms of medicine, the evidence to date suggests that several forms of complementary medicine including yoga, mindfulness meditation, cognitive behavioral therapy, diet and nutrition, exercise and memory rehabilitation, and music therapy may have important roles as adjuncts in the treatment armamentarium for epilepsy. These topics were discussed by a diverse group of medical providers and scientists at the “Lifestyle Intervention for Epilepsy (LIFE)” symposium hosted by Cleveland Clinic.Plain Language Summary: There are many people with epilepsy who continue to have seizures even though they are being treated with medication or brain surgery. Even after seizures stop, some may experience medication side effects. There is research to suggest that certain lifestyle changes, such as yoga, mindfulness, exercise, music therapy, and adjustments to diet, could help people with epilepsy, when used along with routine treatment. Experts discussed the latest research at the “Lifestyle Intervention for Epilepsy (LIFE)” symposium hosted by Cleveland Clinic.