Head of Child Neurology Department Medical University of Warsaw Warsaw, Mazowieckie, Poland
Rationale: Tuberous sclerosis complex (TSC) is associated with high risk of early-onset epilepsy and developmental delay. In recent years, videoEEG monitoring of infants at risk and antiepileptogenic treatment have been proposed for TSC to improve epilepsy and neurodevelopmental outcome.
We aimed to explore how recent concepts, studies and recommendations regarding EEG monitoring and preventive epilepsy treatment have influenced the clinical practice of epilepsy management in TSC children. Methods: A survey on the epilepsy management approach in TSC infants (including presymptomatic EEG monitoring, the timing of antiepileptic drug (AED) introduction, first-choice AED was sent by e-mail to 165 clinicians who actively participated in TSC international research conferences in years 2016 – 2019. Additionally, the e-mail addresses of TSC referral centers were collected from national TSC organizations. The survey was also distributed by the newsletter of the American Epilepsy Society. Only responses from centers taking neurological care of TSC children were included in the study.
Results: Sixty-one responses from 23 countries were received from pediatric centers and were analyzed in the study. Sixty respondents answered questions concerning TSC infants, and 95% of them (57/60) perform at least one EEG study before epilepsy onset and 70.0% (42/60) conduct regular EEG monitoring. Most of the clinicians perform video EEG (42/61, 68.8%) (Table 1). Overall, 51.7% of respondents, mostly from Europe, Australia, and South America, declared the use of preventive antiepileptic treatment in TSC infants (Table 2). Vigabatrin is the most commonly used first AED in TSC children below two years of age both in focal (61.7%) and generalized (56.7%) seizures. For older children, carbamazepine is the first-choice drug for focal seizures in 42.6% of centers.
Conclusions: The recent studies and recommendations considering the potential benefit of an antiepileptogenic approach in TSC have been already influencing clinical practice. Despite the lack of published results of randomized trials, the concepts of pre-seizure EEG monitoring and epilepsy prevention are already becoming widely implemented.
Funding: Please list any funding that was received in support of this abstract.: The work was partially supported by the grant EPIMARKER of the Polish National Center for Research and Development No STRATEGMED3/306306/4/2016. Click here to view image/table
