A diagnosis of epilepsy substantially influences the lives of affected children and adolescents, and concealing the diagnosis can generate additional stress. However, little is known about whether children and adolescents communicate their diagnosis to their friends. We performed a survey at two German university hospitals. Epilepsy patients aged 6–18 years were asked why they did or did not disclose their condition to their friends. A total of 101 patients (44 female, 57 male) were interviewed. Twenty-one (21%) informed all their friends about their epilepsy, 63 (62%) informed only certain friends, and 3 (3%) did not specify. Fourteen (14%) did not inform any friends. Their reasons for informing their friends were trust in friends (47/87; 54%); questions from friends, e.g., about missed school days (29/87; 33%); a wish for friends to be informed in case of an emergency (15/87; 17%); and a desire to live openly with the condition (8/87; 9%). The reasons for not informing friends were fear of stigmatization/shame (4/14; 29%), discouragement from parents (3/14; 21%), and a wish for confidentiality (3/14; 21%). Conclusion: Most children and adolescents inform their friends about their epilepsy. Fear of stigmatization is the main reason for not informing friends about this condition. What is Known• An epilepsy diagnosis is a life-changing event for affected children and adolescents.• Having to conceal the diagnosis can be very stressful. What is New• Most pediatric epilepsy patients informed at least some close friends about their diagnosis motivated by trust in friends; questions from friends, e.g., about missed school days; and a wish for friends to be informed in case of an emergency.• Fear of stigmatization/shame, discouragement from parents, and a wish for confidentiality were the motivations for concealing the disease.

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Anticonvulsant drugs have a high risk of adverse drug events. Little is known about the perception of those events by pediatric patients. We performed a survey in the neuropediatric departments of two university hospitals. Using a questionnaire, we interviewed patients aged 6-18 years with current anticonvulsant treatment regarding (i) their fears about potential adverse drug events, (ii) experienced adverse drug events, and (iii) perceived burden of experienced adverse drug events. One hundred patients took part in the interview. (i) 40 (40%) expressed fears that the medication could harm them. Eighteen of 40 (45%) named fears concerning specific adverse drug events. Of those, 12/18 (67%) feared neurologic or psychiatric symptoms. (ii) 37 (37%) of children described altogether 60 experienced adverse drug events. Of those, 38 (63%) concerned neurologic or psychiatric symptoms. (iii) 32/37 (82%) children who experienced adverse drug events felt bothered by the experienced event. Among others, they described an emotional burden (11/37, 30%), and restrictions in school performance (8/37, 22%) and favorite leisure activities (4/37, 11%). Conclusion: School-aged children are well able to describe adverse drug events of their anticonvulsant medication. Almost two thirds of the described events concern neurologic or psychiatric symptoms that cause an emotional burden and restrictions according to the patients. What is Known: • Anticonvulsants have a high potential of adverse drug events. • In an earlier survey, parents expressed fears of severe adverse drug events such as liver failure, which seldom occur, and reported a high number of neurological and psychological adverse drug events. What is New: • Many children fear that their anticonvulsants could harm them, and they fear and experience neurological and psychological adverse drug events. • According to the children, adverse drug events cause an emotional burden and restrictions in school performance and favorite leisure activities.

Febrile seizures (FS) in children are common, but little is known about parents’ perceptions and knowledge of FS. We interviewed parents of children aged 6 months to 6 years affected by FS (FS group, 65 parents) or unaffected (control group, 54 parents). In the FS group, 32% said they knew their child had an FS when the first event occurred, and 89% described fear when the child had a seizure, with a median intensity of 10/10 (Q25/Q75: 9/10). Related to follow-up, 77% in the FS group (will) observe their child more carefully after the first seizure happened, and 63% (will) give antipyretics earlier at a median temperature of 38.2 °C (100.8 °F). In the FS group, 62% were unaware of FS before the first event (54% of control group did not know about FS thus far, n.s.). In the FS group, 20% would put a solid object in the mouth of a child having a seizure (control group, 39%, p = 0.030), and 92% would administer an available anti-seizure rescue medication (control group, 78%, p = 0.019). In the FS group, 71% feared that children with FS might suffocate (control group, 70%, n.s.).Conclusion: Information about FS and their management should be more available to improve parents’ coping and patient safety. What is Known:• Febrile seizures in children are common.• The prognosis of children suffering from febrile seizures is usually rather good. What is New:• Over half of parents had not informed themselves about febrile seizures so far; and only 32% of parents realized their child had a febrile seizure when it occurred.• Most parents described own fear with a median intensity of 10/10; and 63% (will) give antipyretics earlier at a median temperature of 38.2 °C (100.8 °F).

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