Osman Ipsiroglu

Sleep Hygiene for Children With Neurodevelopmental Disabilities

Sleep disturbances in children with neurodevelopmental disabilities are common and have a profound effect on the quality of life of the child, as well as the entire family. Although interventions for sleep problems in these children often involve a combination of behavioral and pharmacologic strategies, the first line of treatment is the promotion of improved sleep habits or “hygiene.” Despite the importance of sleep-hygiene principles, defined as basic optimal environmental, scheduling, sleep-practice, and physiologic sleep-promoting factors, clinicians often lack appropriate knowledge and skills to implement them. In addition, sleep-hygiene practices may need to be modified and adapted for this population of children and are often more challenging to implement compared with their healthy counterparts. This first comprehensive, multidisciplinary review of sleep hygiene for children with disabilities presents the rationale for incorporating these measures in their treatment, outlines both general and specific sleep-promotion practices, and discusses problem-solving strategies for implementing them in a variety of clinical practice settings.

Sleep Health Issues for Children with FASD: Clinical Considerations

This article describes the combined clinical experience of a multidisciplinary group of professionals on the sleep disturbances of children with fetal alcohol spectrum disorders (FASD) focusing on sleep hygiene interventions. Such practical and comprehensive information is not available in the literature. Severe, persistent sleep difficulties are frequently associated with this condition but few health professionals are familiar with both FASD and sleep disorders. The sleep promotion techniques used for typical children are less suitable for children with FASD who need individually designed interventions. The types, causes, and adverse effects of sleep disorders, the modification of environment, scheduling and preparation for sleep, and sleep health for their caregivers are discussed. It is our hope that parents and also researchers, who are interested in the sleep disorders of children with FASD, will benefit from this presentation and that this discussion will stimulate much needed evidence-based research.

They silently live in terror… why sleep problems and night-time related quality-of-life are missed in children with a fetal alcohol spectrum disorder.

Children and adolescents with a Fetal Alcohol Spectrum Disorder (FASD) are at high-risk for developing sleep problems (SPs) triggering daytime behavioral co-morbidities such as inattention, hyperactivity, and cognitive and emotional impairments. However, symptoms of sleep deprivation are solely associated with typical daytime diagnosis, such as attention deficit hyperactivity disorder (ADHD) and treated with psychotropic medications. To understand how and why SPs are missed, we conducted qualitative interviews (QIs) with six parents and seven health care professionals (HCPs), and performed comprehensive clinical sleep assessments (CCSAs) in 27 patients together with their caregivers referred to our clinic for unresolved SPs. We used narrative schema and therapeutic emplotment in conjunction with analyzes of medical records to appropriately diagnose SPs and develop treatment strategies. The research was conducted at British Columbia Childrens Hospital in Vancouver (Canada) between 2008 and 2011. In the QIs, parents and HCPs exhibited awareness of the significance of SPs and the effects of an SP on the daytime behaviors of the child and the associated burdens on the parents. HCPs systemic inattention to the sequelae of SPs and the affected familys wellbeing appears due to an insufficient understanding of the various factors that contribute to nighttime SPs and their daytime sequelae. In the CCSAs, we found that the diagnostic recognition of chronic SPs in children and adolescents was impaired by the exclusive focus on daytime presentations. Daytime behavioral and emotional problems were targets of pharmacological treatment rather than the underlying SP. Consequently, SPs were also targeted with medications, without investigating the underlying problem. Our study highlights deficits in the diagnostic recognition of chronic SPs among children with chronic neurodevelopmental disorders/disabilities and proposes a clinical practice strategy, based on therapeutic emplotment that incorporates patients and parents contributions in recognizing SPs and related sequelae in designing appropriate treatment and care.

Cultural aspects in the management of inborn errors of metabolism.

European Health Care Systems have not yet accommodated both previous and current migration waves. Children from immigrant families, especially children with chronic conditions, are particularly affected from the shortcomings in medical care. One condition, phenylketonuria (PKU), is an inborn error of metabolism (IEM) which results in intellectual disability unless treated with a lifelong phenylalanine (Phe) restricted diet. In our PKU clinic, patients from families who previously had emmigrated from the geographic area of Turkey to Austria, exhibited worse blood Phe control and cognitive development than comparable patients from native Austrian families. Using structured and semi-structured interviews, questionnaires, and illness narratives, we identified language, psychosocial, economic, educational and cultural barriers as factors influencing adherence to treatment. Our findings led us to conclude that access to interpreter services, exploration of the socio-cultural background and of family ecology, as well as bi-directional communication and medical decision making according to the “best interest of the child” principle, may improve outcomes in patients requiring complex treatment and care.

A randomized controlled trial of an intervention for infants’ behavioral sleep problems

BackgroundInfant behavioral sleep problems are common, with potential negative consequences. We conducted a randomized controlled trial to assess effects of a sleep intervention comprising a two-hour group teaching session and four support calls over 2xa0weeks. Our primary outcomes were reduced numbers of nightly wakes or parent report of sleep problem severity. Secondary outcomes included improvement in parental depression, fatigue, sleep, and parent cognitions about infant sleep.MethodsTwo hundred thirty five families of six-to-eight month-old infants were randomly allocated to intervention (nu2009=u2009117) or to control teaching sessions (nu2009=u2009118) where parents received instruction on infant safety. Outcome measures were observed at baseline and at 6xa0weeks post intervention. Nightly observation was based on actigraphy and sleep diaries over six days. Secondary outcomes were derived from the Multidimensional Assessment of Fatigue Scale, Center for Epidemiologic Studies Depression Measure, Pittsburgh Sleep Quality Index, and Maternal (parental) Cognitions about Infant Sleep Questionnaire.ResultsOne hundred eight intervention and 107 control families provided six-week follow-up information with complete actigraphy data for 96 in each group: 96.9xa0% of intervention and 97.9xa0% of control infants had an average of 2 or more nightly wakes, a risk difference of −0.2xa0% (95xa0% CI: −1.32, 0.91). 4xa0% of intervention and 14xa0% of control infants had parent-assessed severe sleep problems: relative risk 0.3, a risk difference of −10xa0% (CI: 0.11, 0.84-16.8 to −2.2). Relative to controls, intervention parents reported improved baseline-adjusted parental depression (CI: −3.7 to −0.4), fatigue (CI: −5.74 to −1.68), sleep quality (CI: −1.5 to −0.2), and sleep cognitions: doubts (CI: −2.0 to −0.6), feeding (CI: − 2.1 to - 0.7), anger (CI: − 1.8 to - 0.4) and setting limits (CI: −3.5 to −1.5).ConclusionsThe intervention improved caregivers assessments of infant sleep problem severity and parental depression, fatigue, sleep, and sleep cognitions compared with controls.Trial registrationISRCTN42169337, NCT00877162

Neurophysiology of circadian rhythm sleep disorders of children with neurodevelopmental disabilities

This article reviews circadian rhythm sleep disorders (CRSDs) of children with neurodevelopmental disabilities. These sleep disturbances frequently occur in this population but they are misunderstood and under diagnosed. The causes and features of CRSD in children with brain disorders differ in many ways from those seen in typically developing children. It is the brain, including the eyes, which regulates sleep and circadian rhythmicity by modulating pineal melatonin production/secretion and when there is significant brain damage, the sleep/wake patterns may be modified. In most instances CRSD are not disorders of the suprachiasmatic nuclei because these small hypothalamic structures only adjust their functions to the changing photic and non-photic modulatory influences. Each form of CRSD is accompanied by characteristic changes in serum melatonin levels and clinical features. When nocturnal melatonin production/secretion is inappropriately timed or impaired in relation to the environment, timed melatonin replacement therapy will often be beneficial. In this review an attempt is made to clarify the neurophysiological mechanisms underlying the various forms of CRSD because without understanding the photic and non-photic influences on sleep, these sleep disorders can not be fully characterized, defined or even appropriately treated. In the future, the existing definitions for the different forms of CRSD should be modified by experts in pediatric sleep medicine in order to include children with neurodevelopmental disabilities.

“Diagnosis by Behavioral Observation” Home-Videosomnography – A Rigorous Ethnographic Approach to Sleep of Children with Neurodevelopmental Conditions

Introduction: Advanced video technology is available for sleep-laboratories. However, low-cost equipment for screening in the home setting has not been identified and tested, nor has a methodology for analysis of video recordings been suggested. Methods: We investigated different combinations of hardware/software for home-videosomnography (HVS) and established a process for qualitative and quantitative analysis of HVS-recordings. A case vignette (HVS analysis for a 5.5-year-old girl with major insomnia and several co-morbidities) demonstrates how methodological considerations were addressed and how HVS added value to clinical assessment. Results: We suggest an “ideal set of hardware/software” that is reliable, affordable (∼

Pathways to Overmedication and Polypharmacy: Case Examples from Adolescents with Fetal Alcohol Spectrum Disorders

500) and portable (=2.8u2009kg) to conduct non-invasive HVS, which allows time-lapse analyses. The equipment consists of a net-book, a camera with infrared optics, and a video capture device. (1) We present an HVS-analysis protocol consisting of three steps of analysis at varying replay speeds: (a) basic overview and classification at 16× normal speed; (b) second viewing and detailed descriptions at 4–8× normal speed, and (c) viewing, listening, and in-depth descriptions at real-time speed. (2) We also present a custom software program that facilitates video analysis and note-taking (Annotator©), and Optical Flow software that automatically quantifies movement for internal quality control of the HVS-recording. The case vignette demonstrates how the HVS-recordings revealed the dimension of insomnia caused by restless legs syndrome, and illustrated the cascade of symptoms, challenging behaviors, and resulting medications. Conclusion: The strategy of using HVS, although requiring validation and reliability testing, opens the floor for a new “observational sleep medicine,” which has been useful in describing discomfort-related behavioral movement patterns in patients with communication difficulties presenting with challenging/disruptive sleep/wake behaviors.

3D detection of periodic limb movements in sleep

Abstract Due to their challenging/disruptive daytime behaviors, children and youth with fetal alcohol spectrum disorders (FASDs) are at high risk for multiple medication prescriptions. Here, we describe how undiagnosed chronic sleep problems paved the pathway for overmedication and polypharmacy in adolescents with FASDs: prescription of multiple, off-label, and concurrent pharmaceutical medications. We analyzed the challenging/disruptive sleep and wake behaviors and medication history of 17 adolescent patients with a pharmacotherapy timeline capturing (1) the medications and order of prescriptions and (2) the age at the time of first prescription. An in-depth case report demonstrates how missed sleep problems led to a diagnosis and medication cascade, impacting the life and development of the patient. All patients presented with chronic insomnia and fulfilled the diagnostic criteria for familial Willis Ekbom disease (restless legs syndrome). 11/17 had additional clinical signs of sleep-disordered breathing, and 14/17 showed excessive daytime behaviors (sleepiness and/or hyperactive-like behaviors to fight fatigue/sleepiness). The medication analysis revealed two patterns in prescription strategies: (a) targeting sleep problems with melatonin, second-generation antipsychotics, and/or combination of both (10/17) and (b) targeting hyperactive-like daytime behaviors with a psychostimulant (7/10). In addition, many medications were prescribed in combination and at alarmingly young ages. Based on our findings, we suggest assessment of sleep before any assessment of challenging/disruptive daytime behaviors and prescription of psychotropic medications. This observation raises the question to what degree children with neurodevelopmental conditions are subject to overmedication due to a missed underlying condition.

Outcome after renal transplantation in children from native and immigrant families in Austria

The standard polysomnographic method for detecting periodic limb movements in sleep (PLMS) includes measuring the electromyography (EMG) signals from electrodes at the left and right tibialis anterior muscles. This procedure has disadvantages as the cabling affects the patients quality of sleep and the electrodes tend to come off during the night, deteriorating data quality. We used contactless monitoring of body movements by a 3D time-of-flight camera mounted above the bed. Changes in the 3D silhouette indicate motion. Contactless detection of PLMS has several substantial advantages over the EMG and provides more complete and more specific diagnostic data: (1) Motor events caused by other leg muscles than tibialis anterior muscles are fully captured by the 3D method, but missed by EMG. (2) 3D does not react to tonic muscle contractions, where such contractions cause strong deflections in EMG which are annotated as limb movements by most PSG apparatus. Another aspect turned out to be of high practical relevance: Deflections in EMG traces are frequently caused by poor electrode contacts, potentially causing false movement annotations. This can lead to substantial overestimation of the automatically computed PLM index. Contactless sensing completely avoids such problems.The standard polysomnographic method for detecting periodic limb movements in sleep (PLMS) includes measuring the electromyography (EMG) signals from electrodes at the left and right tibialis anterior muscles. This procedure has disadvantages as the cabling affects the patients quality of sleep and the electrodes tend to come off during the night, deteriorating data quality. We used contactless monitoring of body movements by a 3D time-of-flight camera mounted above the bed. Changes in the 3D silhouette indicate motion. Contactless detection of PLMS has several substantial advantages over the EMG and provides more complete and more specific diagnostic data: (1) Motor events caused by other leg muscles than tibialis anterior muscles are fully captured by the 3D method, but missed by EMG. (2) 3D does not react to tonic muscle contractions, where such contractions cause strong deflections in EMG which are annotated as limb movements by most PSG apparatus. Another aspect turned out to be of high practical relevance: Deflections in EMG traces are frequently caused by poor electrode contacts, potentially causing false movement annotations. This can lead to substantial overestimation of the automatically computed PLM index. Contactless sensing completely avoids such problems.