Anita N. Datta

This study examines caregiver perspectives on ketogenic diet (KD) therapy for children with drug-resistant epilepsy, focusing on experiences and children's eating habits after discontinuation. Fifteen caregivers in the KD group and twelve in a comparison group who were not treated with KD participated. All participants completed demographic and eating behaviour questionnaires. KD caregivers also completed a questionnaire on their KD experience, with follow-up interviews for member checking. Some caregivers in both groups reported avoidant or restrictive eating in their child, with no significant differences between groups. Caregivers described mixed outcomes of KD; however, more than half said they would choose the diet again, including some whose children did not achieve seizure control. Challenges reported by caregivers included time, financial, and social burdens. Caregivers emphasized the need for practical resources and peer support and highlighted the importance of pre-intervention guidance to help families weigh potential benefits and burdens of KD before initiation.

Trisomy 21 (T21) is the most common chromosomal disorder and is associated with a substantially increased risk of epilepsy, affecting approximately 5–10% of children [1,2]. Among infants with T21, infantile epileptic spasms syndrome (IESS) is the most common epilepsy syndrome of the first year of life, with a reported prevalence of 0.6–13%, approximately 100-fold higher than in the general population [3,4].

Introduction: Lennox-Gastaut syndrome (LGS) is characterized by drug-resistant seizures, cognitive impairment, and significant comorbidities, requiring lifelong care. Despite therapeutic advances, real-world management and system-level barriers in Canada are not well defined. A national survey was conducted to examine Canadian practices in LGS diagnostic approaches, therapies, comorbidity management, counseling practices, and transition services, aiming to identify gaps and guide quality improvement initiatives. Methods: Following a literature review, a 41-item web-based survey was developed and distributed to neurologists and allied health workers via the Canadian League Against Epilepsy and the Canadian Neurological Sciences Federation. Results: Among 111 respondents (77% physicians; 79% academic practice), diagnostic confidence was limited: 46% believed LGS is both over- and underdiagnosed, and only 5% felt most patients are accurately identified. Adult diagnosis was considered particularly challenging (46%). Genetic testing for unknown etiologies was routine for 67% and, however, was more common among pediatric than adult neurologists (81% vs 41%, p < 0.001). Valproic acid (98%), clobazam (82%), and lamotrigine (75%) were the most common first-line anti-seizure medications (ASMs), yet 67% rated available treatments as inadequate. Reported treatment barriers included limited ASM efficacy (68%), adverse effects (38%), and comorbidity management challenges (37%). Corpus callosotomy was perceived as underutilized (71% overall), suggesting access disparities. Time and resource limitations hindered comorbidity screening. Only 23% reported access to formal transition programs. Conclusions: Significant gaps remain in the diagnosis and management of LGS in Canada, particularly in treatment, comorbidity screening, and transition care. National guidelines, standardized pathways, and improved access to multidisciplinary services are needed to enhance outcomes.

Epilepsy fellowship training in Canada is heterogeneous in program length, extent of electroencephalography (EEG) training, and exposure to transitional and surgical care. This study aimed to develop a national framework for epilepsy fellowship curricula by analyzing expert consensus within the Canadian League Against Epilepsy (CLAE) through thematic discourse analysis. We conducted a qualitative thematic discourse analysis of recorded CLAE expert panel meetings with 22 participants, including fellowship program directors and faculty educators. Discussions addressed core competencies, assessment practices, program duration, transition training, and advanced care. Transcripts were analyzed to identify recurrent discursive patterns and areas of alignment and tension. Six interrelated themes were identified, emphasizing early mastery of foundational competencies, a staged introduction of advanced skills, hybrid time-and-competency structures, the formative use of EEG examinations, flexible transition and surgical exposure pathways, and guidance rather than governance. Participants negotiated national coherence while preserving institutional flexibility. The findings support early acquisition of core competencies, context-sensitive advanced training, and formative assessment guided by competency-based medical education and sociocultural learning principles. This framework balances standardization with institutional flexibility to improve patient safety, trainee preparedness, and equitable access across Canadian programs.

Epileptologists are neurologists with advanced training in the diagnosis and management of complex epilepsy. In Canada, epilepsy fellowship programs vary considerably in duration and content because of the lack of formal accreditation or standardized curricula. Contributing factors include regional differences in resources, infrastructure, and program-specific goals. To address this variability, the Canadian League Against Epilepsy established a working group to develop a national consensus framework for postgraduate epilepsy education. The process started with a comprehensive literature review of North American and international curricula and standards to ensure alignment. The nominal group technique involved 4 rounds with Canadian epilepsy educators, focusing on idea generation, sharing, discussion, and questionnaire completion on key topics. A 70% agreement threshold was set to establish consensus. Items not reaching this threshold were revisited in a final discussion round. Recorded discussions were analyzed, with the eventual goal of incorporating these findings into a national consensus guideline for epilepsy fellowship training in Canada. Agreement was reached on core topics such as eligibility, fellowship duration, learning objectives, timing of skill acquisition, epilepsy surgery exposure, research involvement, evaluation methods, and accreditation. Areas lacking consensus underwent further exploration in a final survey round. The process also highlighted priorities for future work, including program accreditation and the development of national clinical examinations. This study represents a foundational step in establishing unified standards for epilepsy fellowship training in Canada and reinforces the importance of national collaboration to promote excellence in epilepsy and EEG education.