Clinical seizure semiology is subtle and identification of seizures by parents is unreliable in infants with tuberous sclerosis complex

This retrospective cohort study at a single pediatric hospital analyzed prolonged video-EEG (vEEG) recordings from nine infants with antenatally diagnosed tuberous sclerosis complex (TSC) to assess parental seizure detection accuracy and total seizure burden. Across 24 prolonged vEEG recordings totaling 634 hours, 674 focal seizures were identified in eight patients, with an average frequency of one focal seizure per hour. Only 32.6% of seizures were clinical, and parents identified just 28.6% of those clinical seizures. Parents failed to identify any of the 30 clusters of epileptic spasms, which were predominantly electrographic. The findings demonstrate that clinical seizure semiology in these infants is often subtle and that parental recognition is poor, even with prior education. The study implies that accurate seizure frequency assessment in infants with TSC requires prolonged vEEG monitoring, as decisions based solely on parental reports may underestimate seizure burden.