Browse Items (145 total)
- Tags: Clinical Article
Family experiences and viewpoints of palliative and supportive care for children with cancer: Can we do better?
Tags: 2018, Awareness, Basic Needs, Child, Clinical Article, conference abstract, Du Plessis J, error, Exploratory Research, Female, financial management, Grounded Theory, Human, Interview, Male, Meiring M, Oncology, Oncology 2018 List, Palliative Therapy, Pediatric Blood and Cancer, psychosocial care, Qualitative Research, Sibling, South Africa, Staff, Stones D
The codesign of an interdisciplinary team-based intervention regarding initiating palliative care in pediatric oncology
Tags: 2018, Article, Bone Marrow Transplantation, Casas JA, Child, Childhood Cancer, Clinical Article, DiDomenico C, Feasibility Study, Female, Feudtner C, frustration, Hill DL, Human, Male, Oncology 2018 List, Palliative Therapy, solid malignant neoplasm, Supportive Care In Cancer, Szymczak JE, Uncertainty, Walter JK
End-of-life care in children with hematologic malignancies
Tags: 2017, 52-26-6 (morphine), 57-27-2 (morphine), Adolescent, Adult, Article, Balzer S, Blood Transfusion, Borkhardt A, Child, Child Care, Clinical Article, Cohort Analysis, Controlled Study, Fatigue, Female, hematologic malignancy/dt [Drug Therapy], hematologic malignancy/th [Therapy], Hoell JI, Home Care, Hospital Mortality, Human, Intensive Care Unit, Janßen G, Kuhlen M, Male, Morphine/dt [drug Therapy], mucosa inflammation, Oncology 2018 List, Oncotarget, Palliative Therapy, pallor, Patient Referral, petechia, prescription, Retrospective Study, somnolence, Terminal Care, treatment duration, walking difficulty, Warfsmann J
Social worker and chaplain activities with parents of critically ill children with cancer
Tags: 2018, Arenson M, audio recording, Cancer Patient, cancer stem cell, Child, Clergy, Clinical Article, Content Analysis, Critical Care Medicine, Critically Ill Patient, Female, Heap N, Human, human cell, Interview, Lentini N, Male, Martinez E, Michelson K, Mortality, Oncology 2018 List, Palliative Therapy, Pediatric Intensive Care Unit, Self Care, Social Worker, Statistics
Care with love: Parents' experiences in caring their child with cancer under palliative care
Tags: 2018, Allenidekania A, Caregiver, Child, Clinical Article, conference abstract, daily life activity, Data Analysis, Fatigue, Fear, Female, Human, Interview, jealousy, Male, Malignant Neoplasm, Nafratilova M, Nurse, Oncology 2018 List, Palliative Therapy, Pediatric Blood and Cancer, Phenomenology, primary medical care, Sibling, Uncertainty, Wanda D
The utilization of palliative care units by children with cancer: A nationwide survey
Parental experiences and coping strategies when caring for a child receiving paediatric palliative care: a qualitative study
Tags: 2019, anxiety, Article, Bosman D K, Caregiving, Child, Child Care, Child Parent Relation, Clinical Article, Colenbrander D A, Controlled Study, Coping, Coping Behavior, Decision Making, European Journal of Pediatrics., Experiences, Female, Grief, Grootenhuis M A, Human, Interview, July 2019 List, Kars M C, Male, Paediatrics, Palliative Care, Palliative Therapy, Parents, Pediatrics, Perception, Qualitative Research, Schouten-van Meeteren A Y N, tension, Thematic Analysis, Uncertainty, van Delden J J M, van den Bergh E M M, Verberne L M
Parental experiences of end of life care decision-making for children with life-limiting conditions in the paediatric intensive care unit: A qualitative interview study
Tags: 2019, Advance Care Planning, Article, Bmj Open, Child, Clinical Article, Coad J, Dale J, Death, Decision Making, Female, genetic transcription, Hill E, Human, Human Tissue, Interview, July 2019 List, Male, Mitchell S, national health service, Nonverbal Communication, paediatric palliative care, Palliative Care, Palliative Therapy, Pediatric Intensive Care Unit, Pediatrics, Plunkett A, Spry J L, Thematic Analysis
Parents' experiences of requests for organ and tissue donation: The value of asking
Tags: 2019, Archives of Disease in Childhood., Article, Awareness, Brierley J, Child, Clinical Article, Coping Behavior, coronary care unit, Darlington A S, Fear, Female, Hospice, Human, July 2019 List, Long-Sutehall T, Male, Multicenter Study, Neonatal Intensive Care Unit, Organ Donation, organ donor, Palliative Care, Palliative Therapy, Parents, Pediatric Intensive Care Unit, Qualitative Research, Randall D, Retrospective Study, Robinson V, Terminal Care, Wakefield C
Exploring knowledge and perceptions of palliative care to inform integration of palliative care education into cystic fibrosis care
Tags: 2019, Adolescence, Adolescent, Adult, Article, Attitude To Health, August 2019 List, Brown D E, Caregiver, Carney S D, Clinical Article, Communication, Cystic Fibrosis, Dellon E P, Female, Hailey C E, Health Care Personnel, Health Education, Helms S W, Human, lung fibrosis, Male, Palliative Care, Palliative Therapy, Parent, Patient Education, Pediatric Pulmonology, Perception, Prieur M G, Priority Journal, Qualitative Analysis, Schmidt H J, Semi Structured Interview, Shay R
Interdisciplinary Perspectives on the Value of Massage Therapy in a Pediatric Hospice
Tags: 2019, accident prevention, Article, August 2019 List, Bainbridge L, Child, Clinical Article, Clinician, Comfort, Controlled Study, Egeli D, Female, Hospice Care, Human, Human Dignity, Journal of hospice and palliative nursing : JHPN : the official journal of the Hospice and Palliative Nurses Association., leisure, Male, Massage, Miller T, Perception, Potts J, rest, Self Care, Semi Structured Interview, Staff, Thematic Analysis
End of life care in children with neurodisability and concurrent palliative care needs: An audit of local Paediatric palliative services
Tags: 2019, Archives of Disease in Childhood, August 2019 List, Awareness, Canavan disease, Cerebral Palsy, Child, Clinical Article, conference abstract, Decision Making, disorders of mitochondrial functions, Documentation, Female, Hqli F, Human, Male, Medical Specialist, Monitoring, Nutrition, Pain, Palliative Therapy, Rett syndrome, Santhanam G, School Child, secondary health care, Seizure, Social Care, Spinal Muscular Atrophy, Terminal Care
Rapid response physiotherapy service in patients with life limiting conditions
Tags: 2019, Archives of Disease in Childhood, August 2019 List, Child, Clinical Article, conference abstract, Controlled Study, Female, Griffin H, Hospital Admission, hospital bed, Hospitalization, Human, lower respiratory tract infection, Male, Michael A, Milner S, physiotherapist, Physiotherapy, Quality Of Life, Risk Assessment, Sample Size
Gabapentin for the treatment of pain manifestations in children with severe neurological impairment: A single-centre retrospective review
Tags: 2019, alopecia/si [Side Effect], BMJ Paediatrics Open, Bourke B, Broderick A, Child, Clinical Article, Collins A, Devins M, Disease Severity, Drug Efficacy, Drug Substitution, Drug Withdrawal, gabapentin/ae [Adverse Drug Reaction], gabapentin/dt [Drug Therapy], gabapentin/pv [Special Situation for Pharmacovigilance], Gastroenterology, General Paediatrics, Human, Hussey S, hypertransaminasemia/si [Side Effect], Irritability, lethargy/si [Side Effect], Mannion R, muscle twitch, Neurodisability, Neurologic Disease, October 2019 List, Pain, Pain/dt [drug Therapy], Palliative Care, pregabalin/dt [Drug Therapy], pregabalin/pv [Special Situation for Pharmacovigilance], Priority Journal, Retrospective Study, Review, treatment duration, treatment response, vomiting/dt [Drug Therapy], vomiting/si [Side Effect]
Use of time in people with a life-limiting illness: A longitudinal cohort feasibility pilot study
Tags: 2019, accelerometry, acceptability, Adult, Article, Australia, burden, Caregiver, Child, Clinical Article, Cohort Analysis, cohort study, Controlled Study, Currow D C, European Quality of Life 5 Dimensions Questionnaire, Feasibility, Feasibility Study, Female, Human, Jones T A, Karnofsky Performance Status, Male, multimedia, numeric rating scale, October 2019 List, Olds T S, Outpatient, Palliative Care, Palliative Medicine, Palliative Therapy, Pilot Study, Quality Of Life, Recall, time-use, Williams M T
The experiences of bereaved family caregivers with advance care planning for children with medical complexity
Tags: 2019, Advance Care Planning, Amin R, Caregiver, Child, Clinical Article, Cohen E, conference abstract, Consultation, Content Analysis, Conversation, Death, Female, genetic transcription, Health Care Personnel, Hellman J, Human, Human Tissue, Informed Consent, Lord S, Male, Moore C, Netten K, October 2019 List, Orkin J, Paediatrics and Child Health (Canada), Perception, Personal Experience, Rappaport A, Semi Structured Interview
Attempting to Define Clinical Productivity Metrics among Pediatric Palliative Care Services at Academic Children's Hospitals
Tags: 2019, Article, billing and coding, Brook I, Burnout, Child, Clinical Article, clinical productivity, Convenience Sample, Female, Fossa M, Human, Human Tissue, Journal of Palliative Medicine, Kang T, Leadership, Mahoney D P, Male, October 2019 List, Palliative Therapy, Pediatric Palliative Care, productivity, Program Development, sustainability, United States, workload
Congenital Cardiothoracic Surgeons and Palliative Care: A National Survey Study
Tags: 2019, Adolescent, Adult, Article, Blume ED, Child, Clinical Article, December 2019 List, Female, Human, Hypoplastic Left Heart Syndrome, Journal Of Palliative Care, Male, May R, Medical Care, Morell E, Palliative Therapy, Pediatric Cardiology, Perception, Prenatal Diagnosis, Rajagopal S, Thompson J, thoracic surgeon
Deep Brain Stimulation in Rare Inherited Dystonias
Tags: 2016, Adolescent, Adult, Aged, Aquino C C, Article, ataxia telangiectasia, ataxia telangiectasia/di [Diagnosis], ataxia telangiectasia/dt [Drug Therapy], atypical dopa responsive dystonia/di [Diagnosis], atypical dopa responsive dystonia/dt [Drug Therapy], Baclofen/dt [drug Therapy], Beaulieu-Boire I, benzodiazepine derivative/dt [Drug Therapy], Brain Depth Stimulation, Brain Stimulation, Burke Fahn Marsden Dystonia Rating Scale, cerebellar ataxia/di [Diagnosis], cerebellar ataxia/dt [Drug Therapy], Child, chorea/di [Diagnosis], chorea/dt [Drug Therapy], Clinical Article, clinical assessment, Clinical Effectiveness, clobazam/dt [Drug Therapy], clonazepam/dt [Drug Therapy], deep brain stimulation, diazepam/dt [Drug Therapy], disease duration, Disease Severity, Dystonia, dystonia/di [Diagnosis], dystonia/dt [Drug Therapy], Dystonic Disorder/su [surgery], dystonic disorder/th [Therapy], entacapone/cb [Drug Combination], entacapone/dt [Drug Therapy], escitalopram/dt [Drug Therapy], extrapyramidal syndrome/di [Diagnosis], extrapyramidal syndrome/dt [Drug Therapy], Fallis M, Fasano A, Follow Up, gabapentin/dt [Drug Therapy], haloperidol/dt [Drug Therapy], Hodaie M, Human, Inherited dystonia, Kalia S K, Lang A E, levodopa/dt [Drug Therapy], lorazepam/dt [Drug Therapy], Lozano A, MCM deficiency, methylmalonic aciduria/di [Diagnosis], methylmalonic aciduria/dt [Drug Therapy], Middle Aged, mirtazapine/dt [Drug Therapy], Moro E, motor dysfunction assessment, NCL, Nemaline myopathy, nemaline myopathy/di [Diagnosis], nemaline myopathy/dt [Drug Therapy], neuronal ceroid lipofuscinosis/di [Diagnosis], neuronal ceroid lipofuscinosis/dt [Drug Therapy], olanzapine/dt [Drug Therapy], outcome assessment, Phenotype, Poon Y Y, pramipexole/cb [Drug Combination], pramipexole/dt [Drug Therapy], Preoperative Care, Priority Journal, Rating Scale, risperidone/dt [Drug Therapy], School Child, selegiline/cb [Drug Combination], selegiline/dt [Drug Therapy], Surgery, surgical intervention, tetrabenazine/dt [Drug Therapy], therapy effect, time to treatment, tizanidine/dt [Drug Therapy], tone and motor problems, trazodone/dt [Drug Therapy], Treatment, trihexyphenidyl/cb [Drug Combination], trihexyphenidyl/dt [Drug Therapy], Trisomy/di [diagnosis], trisomy/dt [Drug Therapy], Wilson disease/di [Diagnosis], Wilson disease/dt [Drug Therapy], woodhouse sakati syndrome/di [Diagnosis], woodhouse sakati syndrome/dt [Drug Therapy], x trisomy/di [Diagnosis], x trisomy/dt [Drug Therapy]
Mitochondrial capacity, muscle endurance, and low energy in friedreich ataxia
Tags: 2017, Adolescent, Adult, alertness, Article, Bossie H M, cellular subcellular and molecular biological phenomena and functions, characteristics, Child, Clinical Article, Comparative Study, Controlled Study, Cross-sectional Study, Disease Severity, electrostimulation, endurance, energy, Fatigue, Female, Friedreich ataxia, Godin Leisure Time Physical Activity Score, Human, Male, McCully K K, mechanomyography, mitochondrial capacity, Muscle and Nerve, muscle endurance, muscle exercise, myography, near infrared spectroscopy, O'Connor P J, oxygen consumption, physical energy, Priority Journal, Schoick R A V, School Child, scoring system, skeletal muscle, Trajectory, Willingham T B
A cross-sectional controlled developmental study of neuropsychological functions in patients with glutaric aciduria type i
Tags: 2015, Adolescent, Adult, Article, Barry Albright Dystonia Scale, Boy N, Burgard P, characteristics, Child, Clinical Article, Cognition, cognitive development, continuous performance test, Controlled Study, Cross Sectional Study, Dystonia, dystonia/di [Diagnosis], enzyme deficiency, Female, Garbade S F, Glahn E M, Glutaric acidemia type I, glutaric aciduria type I, Haege G, Heringer J, Hoffmann G F, Human, Information Processing, Kolker S, Male, Metabolic Disorder, motor dysfunction, motor performance, neurologic disease assessment, newborn screening, Orphanet Journal Of Rare Diseases, response time, tone and motor problems, Trajectory, visual memory, visuomotor coordination, working memory
Effect of selective dorsal rhizotomy on daily care and comfort in non-walking children and adolescents with severe spasticity
Tags: 2017, Adolescent, Attention, Becher J G, Bolster E A M, Buizer A I, Cerebral Palsy, Child, Clinical Article, Comfort, Congenital Malformation, Controlled Study, dorsal rhizotomy, Dystonia, European Journal of Paediatric Neurology, Follow Up, Human, leg muscle, lipidoses, Medical History, Pain, risk factor, Satisfaction, School Child, scoliosis, selective dorsal rhizotomy, Spasticity, Stadhouder A, Strijers R L, surgical intervention, tone and motor problems, van de Pol L A, van Ouwerkerk W J, van Schie P E M, Vermeulen R J
Preliminary Study of Neurodevelopmental Outcomes and Parenting Stress in Pediatric Mitochondrial Disease
Tags: 2017, Aggression, anxiety disorder/dm [Disease Management], Article, attention disturbance/dm [Disease Management], behavioral problems, brain atrophy/dm [Disease Management], characteristics, Child, Child Behavior, childhood disease/dm [Disease Management], Clinical Article, Comorbidity, daily life activity, delinquency, depression/dm [Disease Management], Disease Severity, drug resistant epilepsy/dm [Disease Management], drug resistant epilepsy/dr [Drug Resistance], Emotion, Eom S, Female, Human, intellectual impairment/dm [Disease Management], Intelligence, Intelligence Quotient, lactic acidosis/dm [Disease Management], Lee Y M, Leigh disease/dm [Disease Management], Leigh syndrome, Male, MELAS syndrome, MELAS syndrome/dm [Disease Management], mitochondrial disorders, muscle disease/dm [Disease Management], nervous system development, neuroimaging, nuclear magnetic resonance imaging, Parental Stress, Pediatric Neurology, postnatal depression/dm [Disease Management], Preschool Child, Priority Journal, problem behavior/dm [Disease Management], Prognosis, psychomotor development, Quality Of Life, sleep disorder/dm [Disease Management], social problem, somatization/dm [Disease Management], thinking impairment/dm [Disease Management], Trajectory
Balloon dilatation in esophageal strictures in epidermolysis bullosa and the role of anesthesia
Tags: 2017, Adolescent, Adult, Anesthesia, Article, Ates U, Balloon dilatation, Can O S, Child, Clinical Article, Clinical Effectiveness, colon interposition, digestive endoscope, Dindar H, Diseases of the Esophagus, Dysphagia, endoscopic balloon dilatation, epidermolysis bullosa, Ergun E, esophagus balloon, esophagus perforation, esophagus stenosis/co [Complication], esophagus stenosis/th [Therapy], feeding difficulties, Female, Gastrostomy, Gollu G, Human, Male, Patient Safety, Preschool Child, Priority Journal, Retrospective Study, School Child, surgical intervention, Young Adult
Intrathecal baclofen treatment an option in X-linked adrenoleukodystrophy
Tags: 1134-47-0 (baclofen), 1309378-01-5 (botulinum toxin A), 1638949-86-6 (botulinum toxin A), 1800016-51-6 (botulinum toxin A), 2018, 93384-43-1 (botulinum toxin A), Addison disease, adrenoleukodystrophy/dt [Drug Therapy], adrenoleukodystrophy/su [Surgery], Article, baclofen, Baclofen/dt [drug Therapy], baclofen/po [Oral Drug Administration], baclofen/tl [Intrathecal Drug Administration], balance disorder, behavior change, bladder dysfunction, botulinum toxin A, Case Report, Child, Clinical Article, clinical examination, clonus, diplopia, drug dose increase, Dystonia, Ehrstedt C, European Journal of Paediatric Neurology, Fatigue, hearing disorder, Hjartarson H T, Human, hyperpigmentation, intrathecal baclofen, intrathecal pump, Leukodystrophy, limited mobility, Male, Pain, pharmacologic interventions, Priority Journal, Quality Of Life, Range of Motion, School Child, Spasticity, strabismus, Tedroff K, tone and motor problems, urinary catheter, visual disorder, X chromosome linked disorder/dt [Drug Therapy], X chromosome linked disorder/su [Surgery], X-linked adrenoleukodystrophy
Sleep abnormalities in untreated patients with mucopolysaccharidosis type VI
Tags: 2011, American Journal of Medical Genetics Part A, anamnesis, apnea, Article, Azevedo A C, Barrios P, breathing difficulties, characteristics, Child, Clinical Article, Clinical Feature, Controlled Study, Cross-sectional Study, Dalcin P, disease association, Disease Severity, Doppler echocardiography, Fagondes S, Female, Giugliani R, Glycosaminoglycans, Human, John A, Lysosomal storage diseases, lysosome storage disease, macroglossia, Male, Maroteaux Lamy syndrome, Menna-Barreto S, Morquio syndrome, MPSVI, Mucopolysaccharidosis, oxygen saturation, oxygen/ec [Endogenous Compound], physical examination, pigeon thorax, Polysomnography, Preschool Child, Prevalence, Priority Journal, Prospective Study, pulmonary hypertension, Schwartz I, Sleep apnea, sleep apnea syndrome/di [Diagnosis], sleep disorder, snoring, Trajectory, witnessed apnea
Pediatric leukodystrophies: The role of the otolaryngologist
Tags: 1309378-01-5 (botulinum toxin A), 1638949-86-6 (botulinum toxin A), 1800016-51-6 (botulinum toxin A), 2017, 93384-43-1 (botulinum toxin A), Adolescent, Adult, Aicardi-Goutières syndrome, anamnesis, Article, aspiration pneumonia, Assessment, Bernard G, botulinum toxin A/dt [Drug Therapy], breathing difficulties, characteristics, Child, Clinical Article, Cohort Analysis, Comorbidity, Daniel S J, Drool, drooling, Dysphagia, feeding difficulties, head and neck disease, hearing impairment, Human, hypersalivation/su [Surgery], International Journal of Pediatric Otorhinolaryngology, Kay-Rivest E, Khendek L, Krabbe disease, Leukodystrophy, leukodystrophy/dt [Drug Therapy], nose feeding, otolaryngologist, Pelizaeus-Merzbacher disease, physical examination, Physician Attitude, Priority Journal, Quality Of Life, quality of life assessment, Questionnaire, sleep disturbance, stomach tube, Trajectory, x-linked adreno-leukodystrophy
Feed-induced Dystonias in Children with Severe Central Nervous System Disorders
Tags: 1134-47-0 (baclofen), 2017, acquired brain injury, Adolescent, Article, Baclofen/dt [drug Therapy], baclofen/tl [Intrathecal Drug Administration], Campbell D I, Case Study, central nervous system disease, Cerebral Palsy, Child, Clinical Article, Constipation, Dystonia, dystonia/dt [Drug Therapy], feed induced dystonia, feed induced dystonia/dt [Drug Therapy], feeding difficulties, Female, Gastroesophageal Reflux, Gastroscopy, GERD, Human, Hydrocephalus, Hyperglycinemia, Infant, infantile spasm, intestinal dysmotility, intestine motility, Intestine Obstruction, Journal Of Pediatric Gastroenterology And Nutrition, Male, microcephaly, Mordekar S R, motor dysfunction, MPSIII, onset age, Parenteral Nutrition, Percutaneous Endoscopic Gastrostomy, peristalsis, pharmacologic intervention, Practice Guideline, Preschool Child, Priority Journal, reflux esophagitis, Retrospective Study, Rett syndrome, Sanfilippo syndrome, School Child, tone and motor problems, total parenteral nutrition, Velayudhan M, West syndrome
A survey-based study identifies common but unrecognized symptoms in a large series of juvenile Huntington's disease
Tags: 2017, Adolescent, Adult, Article, auditory hallucination, CAG repeat, characteristics, Child, Clinical Article, Controlled Study, Epping E, Espe-Pfeifer P, Female, Health Survey, Hudgell D, Human, Huntington chorea, juvenile, Juvenile Huntington disease, leg pain, Male, Martin E, Mathews K, Moser A D, Nance M, Neurodegenerative Disease Management, Nopoulos P, Pain, Priority Journal, pruritus, psychosis, Quarrell O, skin irritation, sleep disorder, sleep disturbance/disorders, tic, Trajectory, visual hallucination, Zhorne L
Supplementation with carnitine reduces the severity of constipation: A retrospective study of patients with severe motor and intellectual disabilities
Tags: 102767-28-2 (levetiracetam), 1069-66-5 (valproic acid), 1309-48-4 (magnesium oxide), 1317-74-4 (magnesium oxide), 14093-02-8 (iron), 14378-32-6 (zinc), 146-22-5 (nitrazepam), 1622-61-3 (clonazepam), 2017, 22316-47-8 (clobazam), 298-46-4 (carbamazepine), 461-06-3 (carnitine), 50-06-6 (phenobarbital), 53858-86-9 (iron), 541-15-1 (carnitine), 56-99-5 (carnitine), 57-30-7 (phenobarbital), 57-88-5 (cholesterol), 59-30-3 (folic acid), 6484-89-5 (folic acid), 68291-97-4 (zonisamide), 7439-89-6 (iron), 7440-66-6 (zinc), 7782-49-2 (selenium), 8028-68-0 (phenobarbital), 8047-84-5 (carbamazepine), 84057-84-1 (lamotrigine), 99-66-1 (valproic acid), acute brain disease, Adult, albumin, albumin blood level, anticonvulsant therapy, Aomatsu T, Article, bacterial meningitis, bed rest, body mass, brain infarction, carbamazepine/dt [Drug Therapy], carnitine, carnitine deficiency, carnitine deficiency/dt [Drug Therapy], carnitine/dt [Drug Therapy], Cerebral Palsy, Child, cholesterol blood level, cholesterol/ec [Endogenous Compound], Clinical Article, Clinical Trial, clobazam/dt [Drug Therapy], clonazepam/dt [Drug Therapy], Constipation, constipation/dt [Drug Therapy], constipation/pc [Prevention], Controlled Study, copper blood level, cupric ion/ec [Endogenous Compound], diet supplementation, Disease Severity, Endogenous Compound, enema/dt [Drug Therapy], enteric feeding, epilepsy/dt [Drug Therapy], Female, folic acid, folic acid blood level, folic acid/ec [Endogenous Compound], Gene Expression, groups by age, Hospital, Human, Human Tissue, infantile spasm, Inoue K, Intellectual Impairment, iron blood level, iron/ec [Endogenous Compound], Journal of Clinical Biochemistry and Nutrition, lamotrigine/dt [Drug Therapy], levetiracetam/dt [Drug Therapy], magnesium oxide/dt [Drug Therapy], Male, Medical Record Review, Middle Aged, motor dysfunction, Murata S, NCL3, neuronal ceroid lipofuscinosis, nitrazepam/dt [Drug Therapy], Pelizaeus Merzbacher disease, Pelizaeus- Merzbacher disease, periventricular leukomalacia, pharmacologic intervention, phenobarbital/dt [Drug Therapy], prealbumin, prealbumin/ec [Endogenous Compound], Preschool Child, Retrospective Study, School Child, selenium blood level, selenium/ec [Endogenous Compound], sex difference, Tamai H, trace element, Tuberous Sclerosis, valproic acid, valproic acid/dt [Drug Therapy], West syndrome, Yoden A, Young Adult, zinc/ec [Endogenous Compound], zonisamide/dt [Drug Therapy]
Fatigue and depression in children with demyelinating disorders
Tags: 2013, acquired demyelinating syndromes, acute disseminated encephalomyelitis, Adolescent, alertness, Article, Benedict R H B, Canada, characteristics, Child, Child Behavior, Childhood Disease, Clinical Article, Cohort Analysis, Comorbidity, Controlled Study, Cross-sectional Study, demyelinating disease, demyelinating disorders, Depression, disease duration, Epidemiology, Fatigue, Female, Health Survey, Human, Journal of Child Neurology, Male, Mood, Multiple Sclerosis, Parrish J B, Priority Journal, psychological aspect, School Child, Self Report, Sleep, Smerbeck A, Therapy, Trajectory, Weinstock-Guttman B, Yeh E A
Gait, Balance, and Coordination Impairments in Niemann Pick Disease, Type C1
Tags: 2 hydroxypropyl beta cyclodextrin, 2018, 94035-02-6 (2 hydroxypropyl beta cyclodextrin), Adolescent, Adult, Alter K, Article, balance impairment, body equilibrium, case control study, characteristics, Child, Clinical Article, clinical evaluation, Comparative Study, coordination disorder, disease severity assessment, Farhat N, Female, gait disorder, Human, Human Development, intervention study, Journal of Child Neurology, Keener L A, Male, molecular stability, motion analysis system, Neurologic Examination, Niemann Pick disease, NIH NPC Neurologic Severity Scale, NPC, outcome assessment, performance, Porter F, Preschool Child, Priority Journal, Research, Retrospective Study, Sansare A, School Child, scoring system, spatiotemporal analysis, stabilography, Stanley C, tone and motor problems, Trajectory, Upper limb, vts 270, Young Adult, Zampieri C
Otorhinolaryngological, Audiovestibular and swallowing manifestations of patients with Niemann-Pick disease Type C
Tags: 2016, Adolescent, Aksoy S, Akyol U, Article, aspiration scale, auditory response, Balance disorders, body equilibrium, characteristics, Child, Clinical Article, Controlled Study, Demir N, Dysphagia, Endoscopy, feeding difficulties, Female, Flexible endoscopy, hearing, hearing impairment, Hearing problems, Human, International Journal of Pediatric Otorhinolaryngology, Kuscu O, Male, Niemann Pick disease/di [Diagnosis], Niemann-Pick Disease, NPC, Otorhinolaryngology, penetration, postural imbalance, Preschool Child, Priority Journal, Prospective Study, pure tone audiometry, School Child, Senirli R T, stabilography, Swallowing, Swallowing disorders, tone and motor problems, Topcu M, Trajectory, vestibular system, Yigit O
Autism traits in children and adolescents with Cornelia de Lange syndrome
Tags: 2014, Aberrant Behavior Checklist, adaptive behavior, Adolescent, Adult, Age, American Journal of Medical Genetics Part A, Article, Autism, behavior disorder, Behavioral phenotype, behavioral problems, characteristics, Checklist, Child, Childhood Autism Rating Scale, Clark B, Clinical Article, Communication, communication disorder, compulsion, Cornelia de Lange syndrome, daily life activity, De Lange syndrome, Diagnosis, Disease Severity, Emotion, Female, Grados M A, Human, hyperactivity, Intellectual Impairment, Interpersonal Communication, Irritability, Kline A D, Landy-Schmitt C, Language, lethargy, limb, maladjustment, Male, Phenotype, Priority Journal, psychological rating scale, Rating Scale, Repetitive behaviors, rigidity, Skill, social cognition, Socialization, Specht M, Srivastava S, stereotypy, Trajectory, Verbal Communication, Vineland Adaptive Behaviors Scales
Sleep-disordered breathing and its management in children with achondroplasia
Tags: 2017, achondroplasia, adenotonsillectomy, Amaddeo A, American Journal of Medical Genetics Part A, apnea hypopnea index, apnea monitoring, Baujat G, BiPAP, bone dysplasia, breathing difficulties, cervical decompression, Child, Clinical Article, Cormier-Daire V, Couloigner V, CPAP, De Sanctis L, ENT surgery, Fauroux B, Human, James S, Khirani S, Michot C, Neurosurgery, obstructive sleep apnea, physical interventions, Polysomnography, Preschool Child, Prevalence, Retrospective Study, School Child, Sleep disordered breathing, Surgery, surgical interventions, Tenconi R, upper respiratory tract, Zerah M
Development, behavior, and biomarker characterization of Smith-Lemli-Opitz syndrome: An update
Tags: 2016, 7 dehydrocholesterol/ec [Endogenous Compound], 8 dehydrocholesterol/ec [Endogenous Compound], adaptive behavior, Adolescent, Adult, Aggression, Albert P, Article, Autism, automutilation, Behavior, Bianconi S, Bukelis I, Case Study, cerebrospinal fluid level, characteristics, Child, Child Rearing, childhood, cholesterol/ec [Endogenous Compound], Clinical Article, Cognition, delayed development, development, Developmental delay, Farmer C, Female, Human, Intelligence Quotient, Interpersonal Communication, Joseph L, Journal of Neurodevelopmental Disorders, Lanham D, Male, Observational Study, Parent, Porter F D, Preschool Child, Priority Journal, problem behavior, Sarphare G, Smith Lemli Opitz syndrome, Smith-Lemli-Opitz syndrome, Socialization, Stanford-Binet Intelligence Scale, Sterols, Swedo S, Thurm A, Tierney E, tone and motor problems, Trajectory, Unclassified Drug, Walking, Wassif C A, Wheeler C, Young Adult
Functional and gait assessment in children and adolescents affected by Friedreich's ataxia: A one-year longitudinal study
Tags: 2016, Adolescent, Article, assessment of humans, Bella G D, Bertini E, Castelli E, characteristics, Child, Clinical Article, Controlled Study, Female, Friedreich's ataxia, functional assessment, Gait, Gait Analysis and the Scale for the Assessment and Rating of Ataxia, Gazzellini S, Human, Lispi M L, longitudinal study, Male, Petrarca M, Pisano A, PLoS One, Preschool Child, Reliability, step length, stride length, tone and motor problems, Trajectory, Vasco G, Walking, walking velocity, Zazza M
Sleep disorders in Cornelia de Lange syndrome
Tags: 2016, Adolescent, Adult, Ajmone P, American Journal of Medical Genetics Part C - Seminars in Medical Genetics, Article, body mass, Canevini M P, characteristics, Child, Clinical Article, Comorbidity, Controlled Study, De Lange syndrome, Epilepsy, Female, Fossati C, Furia F, Gastroesophageal Reflux, gene, gene mutation, Gervasini C, HDAC8 gene, histone deacetylase 8, Human, Intellectual Impairment, Kullman G, Male, Masciadri M, NIPBL gene, Priority Journal, problem behavior, RAD21 gene, Russo S, Selicorni A, sleep disorder, sleep disturbance/disorders, SMC1A gene, SMC3 gene, Taiana M, Trajectory, Turner K, Vignoli A, Zambrelli E
Perceptible end-of-life signs in PICU, a prospective study
Tags: 2019, Annals of Intensive Care, Artificial Ventilation, bradycardia, Brain Death, Caregiver, Cause Of Death, Child, Chronic Disease, Clinical Article, conference abstract, cyanosis, Drug Withdrawal, edema, February 2020 List, Human, Hypotension, Le Bourgeois F, Male, Naudin J, Neurologic Disease, pallor, Pediatric Intensive Care Unit, petechia, Pierron C, Poncelet G, Prospective Study, respiratory failure, skin color, Sommet J, time of death
Peer-designed parents' bereavement panel: Exposing first-year medical students to pediatric end-of-life care
Tags: 2018, Bereavement, care behavior, Child, Clinical Article, Comfort, conference abstract, Controlled Study, Curriculum, February 2020 List, Female, Human, Human Experiment, Jones A, Learning, Likert scale, Male, Medical School, medical student, pediatric oncologist, Pediatrics, preclinical study, Rolfes M, Starr S, Sunde K, Terminal Care