No improvement in quality of life in children with epilepsy treated with the low glycemic index diet.

BACKGROUND: Up to 30% of children with epilepsy show a poor therapeutic response to pharmacologic treatment. Ketogenic diets, including the less strict low glycemic index treatment (LGIT), may improve seizure control in pharmacoresistant epilepsy. However, little is known about the quality of life (QoL) in children on LGIT. To explore psychosocial implications of the LGIT on pediatric patients and their caregivers, we have conducted a pilot study to explore the QoL of children and adolescents on the diet. METHODS: Pediatric patients on LGIT and their parents completed standardized, validated QoL questionnaires (Pediatric Quality of Life Epilepsy Module), one retrospectively and one while being on LGIT. An additional questionnaire included two open-ended questions in order to gain a better understanding of personal experiences of families. RESULTS: We enrolled six patients with epilepsy on LGIT between the age of 3 and 13 years. Self-reported QoL decreased in all adolescents, regardless of improvement in seizure control. Parent-reported QoL improved in three of six participants, remained stable in one, and decreased in two patients (both displayed no seizure improvement). Parents and adolescents reported positive experiences of trying new foods and being more health conscious, as well as negative themes such as social isolation and meal preparation difficulties. CONCLUSIONS: The lack of improvement in patient-reported QoL points towards an overall negative impact of the LGIT on patient well-being, despite positive effects on seizure control. Our preliminary results indicate that the benefits of seizure control may subjectively be outweighed by adverse social effects of the LGIT. Families should be made aware of psychosocial risks of the diet. Whenever possible, children should be part of the therapeutic decision-making process. Larger prospective studies are required to fully assess the overall impact of the LGIT.

Infantile Idiopathic Intracranial Hypertension: A Case Study and Review of the Literature.

Idiopathic intracranial hypertension, or pseudotumor cerebri, is an increase in cerebrospinal fluid pressure of unknown etiology. It is mostly seen in adults, less frequently in adolescents, rarely in younger children. Only 5 infants meeting idiopathic intracranial hypertension criteria have been mentioned in the literature. We report a case of a previously healthy 9-month-old boy who presented with irritability, decreased appetite, and a bulging fontanelle. Computed tomography (CT) head imaging and cerebrospinal fluid studies revealed normal results. The patient's symptoms transiently resolved after the initial lumbar puncture, but 11 days later, his fontanelle bulged again. A second lumbar puncture revealed an elevated opening pressure of 35 cmH2O and led to a diagnosis of idiopathic intracranial hypertension in accordance with the modified Dandy Criteria. Treatment with acetazolamide at a dose of 25 mg/kg/d was initiated and the patient remained symptom-free for 6 weeks, followed by another relapse. His acetazolamide dose was increased to 37 mg/kg/d, with no further relapses to date. A diagnosis of idiopathic intracranial hypertension is challenging in infants, because the patients cannot yet verbalize typical idiopathic intracranial hypertension-related symptoms such as positional headaches, diplopia, or pulsatile tinnitus. Furthermore, it is more difficult to assess papilledema in that age group. If undetected and untreated, idiopathic intracranial hypertension may result in permanent visual deficits. Little is known about idiopathic intracranial hypertension in infants, and age-specific treatment guidelines are lacking. We discuss this rare case of infantile idiopathic intracranial hypertension and provide a review of the literature, including an overview of disease characteristics and outcomes of idiopathic intracranial hypertension in this very young age group.

Impressions of Early Mobilization of Critically Ill Children-Clinician, Patient, and Family Perspectives.

OBJECTIVES: To understand patient, family caregiver, and clinician impressions of early mobilization, the perceived barriers and facilitators to its implementation, and the use of in-bed cycling as a method of mobilization. DESIGN: A qualitative study, conducted as part of the Early Exercise in Critically ill Youth and Children, a preliminary Evaluation (wEECYCLE) Pilot randomized controlled trial. SETTING: McMaster Children's Hospital PICU, Hamilton, ON, Canada. PARTICIPANTS: Clinicians (i.e., physicians, nurses, and physiotherapists), family caregivers, and capable patients age greater than or equal to 8 years old who were enrolled in a clinical trial of early mobilization in critically ill children (wEECYCLE). INTERVENTION: Semistructured, face-to-face interviews using a customized interview guide for clinicians, caregivers, and patients respectively, conducted after exposure to the early mobilization intervention. MEASUREMENTS AND MAIN RESULTS: Thirty-seven participants were interviewed (19 family caregivers, four patients, and 14 clinicians). Family caregivers and clinicians described similar interrelated themes representing barriers to mobilization, namely low prioritization of mobilization by the medical team, safety concerns, the lack of physiotherapy resources, and low patient motivation. Key facilitators were family trust in the healthcare team, team engagement, an a priori belief that physical activity is important, and participation in research. Increased familiarity and specific features such as the virtual reality component and ability to execute passive and or active mobilization helped to engage critically ill children in in-bed cycling. CONCLUSIONS: Clinicians, patients, and families were highly supportive of mobilization in critically ill children; however, concerns were identified with respect to how and when to execute this practice. Understanding key stakeholder perspectives enables the development of strategies to facilitate the implementation of early mobilization and in-bed cycling, not just in the context of a clinical trial but also within the culture of practice in a PICU.