Family-Centered Care for Children and Families Impacted by Neonatal Seizures: Advice From Parents.

BACKGROUND: Parents of neonates with seizures are at risk of mental health symptoms due to the impact of illness on family life, prognostic uncertainty, and the emotional toll of hospitalization. A family-centered approach is the preferred model to mitigate these challenges. We aimed to identify strategies to promote family-centered care through an analysis of parent-offered advice to clinicians caring for neonates with seizures. METHODS: This prospective, observational, and multicenter (Neonatal Seizure Registry) study enrolled parents of neonates with acute symptomatic seizures. Parents completed surveys about family well-being at 12, 18, and 24 months corrected gestational age. Parents were asked open-ended questions eliciting their advice to clinicians caring for neonates with seizures. Responses were analyzed using a conventional content analysis approach. RESULTS: Among the 310 parents who completed surveys, 118 (38%) shared advice for clinicians. These parents were predominantly mothers (n = 103, 87%). Three overarching themes were identified. (1) Communicate information effectively: parents appreciate when clinicians offer transparent and balanced information in an accessible way. (2) Understand and validate parent experience: parents value clinicians who display empathy, compassion, and a commitment to parent-partnered clinical care. (3) Providesupportand resources: parents benefit from emotional support, education, connection with peers, and help navigating the health care system. CONCLUSIONS: Parents caring for neonates with seizures appreciate a family-centered approach in health care encounters, including skilled communication, understanding and validation of the parent experience, and provision of support and resources. Future interventions should focus on building structures to reinforce these priorities.

Electrographic Seizures and Brain Injury in Children Requiring Extracorporeal Membrane Oxygenation.

BACKGROUND: Single-center studies suggest that up to 30% of children undergoing extracorporeal membrane oxygenation have electrographic seizures. The aim of this study was to characterize seizure prevalence, seizure risk factors, and brain injury prevalence in the pediatric extracorporeal membrane oxygenation population at a tertiary care children's hospital. METHODS: We performed a retrospective systematic review of medical records for 86 consecutive children (neonates to age 21 years) who received Neurology consults and continuous video electroencephalography while undergoing extracorporeal membrane oxygenation from November 2015 to September 2018. RESULTS: Continuous video electroencephalography was initiated in 86 of 170 children who required extracorporeal membrane oxygenation (51%); median duration of continuous vodeo electroencephalography was four days. Nineteen of 86 had electroencephalography-confirmed seizures (22%). Sixteen of 19 had seizures within the first 48 hours on continuous video electroencephalography. Interictal epileptiform discharges were a significant risk factor for seizures; 89% of those with seizures versus 46% of those without had interictal epileptiform discharges (P < 0.001, Fisher's exact test). Children with seizures also had higher pericannulation lactate (median 6.7, interquartile range of 4.3 to 19.0 for those with, and median 4.0, interquartile range of 2.0 to 7.3 for those without; P = 0.02, Mann-Whitney U test). Seizures were associated with hemorrhage on neuroimaging (68% of children with seizures had intracranial hemorrhage versus 34% of those without, P = 0.01, chi-square test). CONCLUSION: Approximately half the children undergoing extracorporeal membrane oxygenation received continuous video electroencephalography during the study period, and 22% had seizures. Interictal epileptiform discharges and elevated pre-extracorporeal membrane oxygenation lactate levels were risk factors for seizures; seizures were associated with intracranial hemorrhage.

Clinical Use and Efficacy of Levetiracetam for Absence Epilepsies.

BACKGROUND: Levetiracetam is prescribed for a broad spectrum of seizure types but does not have a specific indication for absence epilepsy. We hypothesized that levetiracetam is commonly prescribed for children with absence epilepsies and evaluated the efficacy of this medication for absence epilepsy treatment in clinical practice. We also hypothesized that electroencephalographic (EEG) findings could help predict levetiracetam efficacy. METHODS: We reviewed the charts of all patients treated for new-onset absence epilepsies at our pediatric neurology clinic between January 2011 and January 2016. Among 158 children diagnosed with absence epilepsies, 72 were treated with levetiracetam. RESULTS: Levetiracetam was discontinued in 74% (n = 53/72) because of incomplete seizure control (59%, n = 35/72) and/or intolerable side effects (41%, n = 24/72) after a median 8.5 months (interquartile range 2, 17 months). Among patients for whom levetiracetam was effective, 44% (n = 8/18) had polyspikes on their initial EEG, versus 27% (n = 14/52) of patients for whom levetiracetam was discontinued ( P = .17). The maximal prescribed dose was lower for children in whom levetiracetam was effective (29 ± 13 mg/kg/d) than those for whom levetiracetam failed (42 ± 20 mg/kg/d; P = .005). CONCLUSION: In routine clinical practice, levetiracetam is often chosen for patients with absence seizures. However, only about one-quarter of children with absence epilepsy in this study became seizure free with levetiracetam. When effective, levetiracetam can control absence epilepsy at a relatively low dose. Lack of seizure control requiring continued dose escalation should prompt early consideration of a therapeutic medication transition.

Sedation and Analgesia Influence Electroencephalography Monitoring in Pediatric Neurocritical Care.

OBJECTIVES: We assessed neuroactive medication use in critically ill children who require neurological consultation and evaluated the associations between administration of these medications and continuous electroencephalography (cEEG) utilization and seizure frequency. METHODS: We evaluated exposure to sedatives, analgesics, anesthetics, and paralytics in consecutive patients (0 days to 18 years) for whom neurological consultation was requested in three intensive care units (ICUs) [neonatal (NICU), pediatric (PICU), and cardiothoracic (PCTU)]) at one children's hospital. We assessed cEEG usage and seizure incidence in relation to drug exposure. RESULTS: From November 2015 to November 2016, 300 consecutive patients were evaluated (93 NICU, 139 PICU, and 68 PCTU). Ninety-seven (32%) were receiving ≥1 sedative infusion at the time of consultation [NICU 7 (8%), PICU 50(36%), PCTU 40 (58%%]; 91 (30%) received ≥1 paralytic agent within the preceding 24 hours. Continuous electroencephalography was performed more often for patients treated with sedative infusions (81 of 97 versus 133 of 203, P = 0.001) and paralytic medications (80 of 91 versus 134 of 209, P < 0.001) within 24 hours preceding consultation than those who were not. Sixty-eight of 214 (32%) had electrographic seizures (65 of 68 within initial 24 hours of monitoring); seizures were less common among patients who had received sedative infusions (18 of 81 versus 51 of 133, P = 0.014). In multivariable analysis of seizure likelihood, only younger age was associated with increased risk (P = 0.037). CONCLUSIONS: Critically ill infants and children are frequently treated with sedatives, anesthetics, analgesics, and paralytics. Neuroactive medications limit bedside neurological assessments and, in this cohort, were associated with increased cEEG usage. Our data underscore the need to study the effect of these medications on clinical care and long-term outcomes.

How do we diagnose and treat epilepsy with myoclonic-atonic seizures (Doose syndrome)? Results of the Pediatric Epilepsy Research Consortium survey.

OBJECTIVE: To obtain and assess opinions on EMAS diagnostic criteria, recommended investigations, and therapeutic options, from a large group of physicians who care for children with EMAS. METHODS: The EMAS focus group of PERC created a survey to assess the opinions of pediatric neurologists who care for children with EMAS regarding diagnosis and treatment of this condition, which was sent to members of PERC, AES, and CNS. A Likert scale was used to assess the respondents' opinions on the importance of diagnostic and exclusion criteria (five point scale), investigations (four point scale), and treatment (six point scale) of EMAS. Inclusion/exclusion criteria were then classified as critical, strong, or modest. Investigations were classified as essential, recommended, or possible. Therapies were classified as first line, beneficial, indeterminate benefit, or contraindicated. RESULTS: Survey results from the 76 participants determined the following: EMAS inclusion criteria: history suggestive of MAS (critical), recorded or home video suggestive of MAS, generalized discharges on inter-ictal EEG, normal neuroimaging, normal development prior to seizure onset (strong). EMAS exclusionary criteria: epileptic spasms, abnormal neuroimaging, focal abnormal exam, seizure onset six years (strong). RECOMMENDED INVESTIGATIONS: EEG and MRI (essential), amino acids, organic acids, fatty acid/acylcarnitine profile, microarray, genetic panel, lactate/pyruvate, CSF and serum glucose/lactate (strong). RECOMMENDED TREATMENTS: Valproic acid (first line), topiramate, zonisamide, levetiracetam, benzodiazepines, and dietary therapies (beneficial). SIGNIFICANCE: To date, no similar surveys have been published, even though early syndrome identification and initiation of effective treatment have been associated with improved outcome in EMAS. Medications that exacerbate seizures in EMAS have also been identified. This survey identified critical and preferred diagnostic electro clinical features, investigations, and treatments for EMAS. It will guide future research and is a crucial first step in defining specific diagnostic criteria, recommended evaluation, and most effective therapies for EMAS.

Seizures and Antiseizure Medications are Important to Parents of Newborns With Seizures.

BACKGROUND: Neonatal seizures and antiseizure medications both have potentially serious consequences on the developing brain. As such, optimal treatment of neonatal seizures remains unclear. Moreover, little is known about parental experiences, concerns, or unanswered questions. We conducted an online survey to assess parental perspectives regarding neonatal seizures and their management, along with their suggestions for specific high priority research topics. METHODS: Parents whose children had neonatal seizures were recruited through social media support groups to complete an online survey. Respondents progressed through a tiered series of questions about their experiences with neonatal seizures and antiseizure medications. RESULTS: There were 126 eligible respondents. On a Likert scale, parents reported that neonatal seizures had a major effect on their families (median 10 of 10; interquartile range 3; n = 85). They also reported that antiseizure medications had a significant impact on their families (median 7 of 10; interquartile range 5.5; n = 75). The emotional impact of the uncertainty regarding seizures and medications was highlighted. Effects on neurodevelopment, continued seizures, and adverse effects of medications were some of the most commonly reported parental concerns and their highest priority research topics. CONCLUSIONS: Both neonatal seizures and the medications used to treat them contribute to parental worries and have major impact on families. Patient-centered outcomes research should focus on the risk-benefit ratio of neonatal seizures and antiseizure medication. The emotional impact on parents related to the uncertainty regarding both immediate and long-term neonatal seizure management is important to address in the clinical setting.