Disability and caregiver burden: Unique challenges in a developing country.

PURPOSE: This study aimed to identify factors, including degree of disability, that contribute to the caregiver burden of raising children with cerebral palsy in Sri Lanka. METHODS: Participants were caregivers of children with cerebral palsy attending the pediatric neurology clinic of the only tertiary care center in southern Sri Lanka. The locally validated Caregiver Difficulties Scale (CDS) was administered, and demographic information was obtained in a structured interview. Disability data was accessed through the medical record. RESULTS: Of 163 caregivers who participated in this study, 133 (81.2%) demonstrated a moderate to high level of burden, and 91 (55.8%) were at high risk for psychological burden. In the bivariate analysis, caregiver burden significantly correlated with degree of physical disability based on the Gross Motor Function Classification System (GMFCS) and the Manual Ability Classification System (MACS), the presence of medical co-morbidities, and having two or more children. However, only the GMFCS level and number of children remained significant predictors of caregiver burden after controlling for confounding effects. CONCLUSION: Raising a child with cerebral palsy in Sri Lanka is likely to cause caregiver burden, particularly if they have a high level of disability or one or more siblings. Monitoring caregiver burden as part of routine cerebral palsy management is important, which allows targeting psychosocial support to families most in need.

Experience during COVID-19 lockdown and self-managing strategies among caregivers of children with epilepsy: A study from low middle income country.

PURPOSE: Abrupt halt of service provision due to pandemic state of COVID-19, significantly affected care of patients with chronic diseases like epilepsy; its impact being greater on caregivers of vulnerable groups such as children with epilepsy. We performed this study to describe difficulties posed by the lockdown to caregivers of children with epilepsy in a low-middle income country and describe their responses and self-management strategies to overcome difficulties and prepare for a recurrence. METHOD: A cross-sectional all-island survey was carried out at paediatric neurology centers in Sri Lanka. Data was gathered via a face-to-face interview after the lockdown period. Parental stress level was evaluated using a self-rating Stress Assessment Questionnaire. RESULTS: Caregivers of 140 children with epilepsy from seven centers served by paediatric neurologists were interviewed. Mean duration of epilepsy was 7.9 years(SD 4). Majority were on one (52.1 %) or two (20 %) anti-seizure medications regularly. The pandemic did not affect epilepsy control in majority (87.3 %), however, signficant proportion faced difficulties over regular reviews and presecription refills. Despite difficluties, 87.1 % of parents maintained dispensing anti-seizure medications to their child regularly. Caregivers demonstrated healthy self-management strategies such as awareness on medications and access methods to healthcare during lockdown and remained confident of accessability to services. Stress was experienced in < 5%. CONCLUSION: Lockdown status for COVID-19 did not significantly affect the control of epilepsy in children though it posed difficulties for regular reviews and obtaining medications. Self-management strategies will help caregivers to adopt to new-normal status and potential future outbreaks.

A Case of Carbamazepine-Induced Aggravation of Self-Limited Epilepsy with Centrotemporal Spikes Epilepsy and Valproate-Induced Hyperammonemic Encephalopathy in a Child with Heterozygous Gene Variant of Carbomoyl Phosphatase Synthetase Deficiency.

Antiepileptics drugs are the mainstay of the management of epilepsy in children. Sodium valproate (VPA) and carbamazepine (CBZ) are widely used medications in childhood epilepsy. Hyperammonemia has been described as a known side effect of valproate therapy. It is known that VPA-associated HA is common among patients who hold genetic mutations of the carbomoyl phosphatase synthase 1 gene (CPS1). Aggravation of self-limited epilepsy with centrotemporal spikes (SLECTS) is a rare side effect of CBZ. Here, we present a child who had CBZ-induced aggravation of rolandic epilepsy and VPA-induced HA encephalopathy in the background of an unrecognised heterozygous gene variant of CPS1. An 8-year-old boy with SLECTS presented with a history of abnormal behaviours and drowsiness. He was apparently well until six years when he developed seizures in favour of rolandic epilepsy. His electroencephalogram (EEG) showed bilateral predominantly on the right-sided central-temporal spikes and waves. The diagnosis of SLECTS was made, and he was commenced on CBZ. Though he showed some improvement at the beginning, his seizure frequency increased when the dose of CBZ was increased. His repeat EEG showed electrical status in slow-wave sleep, and CBZ was stopped. Subsequently, he was started on VPA, and with that, he developed features of encephalopathy. He had elevated serum ammonia with normal liver functions. VPA was stopped with the suspicion of VPA-induced hyperammonemia. Tandem mass spectrometry did not show significant abnormality in the amino acid profile. Specific genetic analysis revealed a c.2756 C > T.p (Ser919Leu) heterozygote genetic mutation of the CSP 1 gene. This is a classic example where side effects of treatment determine the choice of antiepileptics drugs (AEDs) in childhood epilepsy. It is essential to keep in mind that SLECTS can be aggravated with certain AEDs, and VPA-induced HA in the absence of live failure could be due to underlying inherited metabolic disorders.

Migraine, attention deficit hyperactivity disorder and screen time in children attending a Sri Lankan tertiary care facility: are they associated?

BACKGROUND: Headache and Attention Deficit Hyperactivity Disorder (ADHD) are two relatively common, neuropsychiatric conditions seen in children. Recent studies have shown an association between these two disorders, which are otherwise distinct conditions. This study aims to assess the association between migraine and ADHD, as well as the association between screen-time and these two conditions, among children attending a Sri Lankan tertiary care facility. Possible associations will have important implications in the clinical management of these conditions. METHODS: This was a comparative cross-sectional study of 226 children aged 5-14 years, attending clinics at a tertiary care hospital in Galle, Sri Lanka. Of them, 141 had a diagnosis of migraine and 85 did not have migraine. The presence or absence of ADHD and the use of screen-time among the two groups was analysed. Chi-square test and Mann-Whitney U test was used to assess the associations between these variables. RESULTS: Approximately 5% of the children with migraine had clinically diagnosed ADHD, compared to 3.5% of those without migraine (p = 0.862). The median SNAP-IV scores (inter-quartile range) of the children with migraine and without migraine were 0.60 (0.27-1.00) and 0.44 (0.16-0.80) respectively (p = 0.014). There was no significant difference in screen-time hours per day between children with and without clinically diagnosed ADHD. However, a significant difference in median screen-time (hours per day) was observed between children with and without migraine (2.0 h and 1.0 h respectively; p = 0.012). CONCLUSIONS: Our findings suggest that children with migraine are more likely to show features of hyperactivity/impulsivity and inattentiveness than those without migraine. While no association was found between clinically diagnosed ADHD and screen-time, migraine was associated with longer daily screen use. Screening for ADHD in children diagnosed with migraine may be of benefit. Further studies are required to understand the possible benefits of reducing screen-time in children with migraine.