ABSTRACT
In this article, a sensitive, complex and provocative issue is discussed. It will undoubtedly stimulate a variety of opinions. What do you think? Post your comments about this topic on the Pediatric Nursing Web site and read what others have to say as well. Visit our homepage at www.pediatricnursing.net and click on "Discussions." The opinions and assertions contained herein are the private views of the contributors and do not necessarily reflect the views of Pediatric Nursing or the publisher.
Subject(s)
Child Advocacy/ethics , Clinical Protocols , Euthanasia, Active/ethics , Euthanasia, Active/methods , Medical Futility/ethics , Child Advocacy/legislation & jurisprudence , Clinical Protocols/standards , Dissent and Disputes , Epidermolysis Bullosa Dystrophica/complications , Epidermolysis Bullosa Dystrophica/diagnosis , Epidermolysis Bullosa Dystrophica/prevention & control , Ethical Analysis , Euthanasia, Active/legislation & jurisprudence , Female , Humans , Infant, Newborn , Male , Medical Futility/legislation & jurisprudence , Neonatology/ethics , Netherlands , Prognosis , Quality of Life , Stress, Psychological/etiology , Stress, Psychological/prevention & control , United StatesABSTRACT
Objetivo: avaliar os distúrbios gastrointestinais de crianças e adolescentes com epidermólise bolhosa do tipo distrófica e juncional. Métodos: foram analisados os sinais e sintomas gastrointestinais presentes no primeiro atendimento, assim como os resultados de exames, de todosos pacientes atendidos com a doença em uma unidade universitária de gastroenterologia pediátrica / Objective: to evaluate the gastrointestinal disturbances observed in patientss with epidermolysis bullosa, junctional and dystrophic type. Methods: the gastrointestinal complaints at the first consultation were analysis...
Subject(s)
Humans , Male , Female , Child , Adolescent , Epidermolysis Bullosa Dystrophica/pathology , Epidermolysis Bullosa, Junctional/pathology , Epidermolysis Bullosa Dystrophica/prevention & control , Epidermolysis Bullosa, Junctional/prevention & controlABSTRACT
Sam Hall was diagnosed with epidermolysis bullosa as a baby. Here she describes growing up with the condition and the continual dressing changes it brings, and how she has not let it prevent her from leading an active and exciting life.
Subject(s)
Adaptation, Psychological , Attitude to Health , Epidermolysis Bullosa Dystrophica/psychology , Activities of Daily Living , Adolescent , Bandages , Carboxymethylcellulose Sodium/therapeutic use , Epidermolysis Bullosa Dystrophica/diagnosis , Epidermolysis Bullosa Dystrophica/prevention & control , Female , Humans , Parents/psychology , Psychology, Adolescent , Quality of Life , Silicones/therapeutic use , Skin Care/methods , Skin Care/psychologyABSTRACT
BACKGROUND: Epidermolysis bullosa (EB) is a group of genetic disorders that lead to blister formation at variable depths in skin and mucosa. Vesicles may arise spontaneously or be caused by friction or trauma. Oral tissue fragility and blistering is common in all EB types. The majority of patients with mild forms of EB are able to receive dental treatment. The prevention of dental caries is most challenging in subjects with severe mucosal involvement, as they are least able to routinely undergo correct preventive procedures. The aim of this study was to evaluate the effectiveness of a sucralfate suspension in reducing both pain and the number of blisters in patients with EB, and to obtain improved oral hygiene and a lower incidence of caries. METHODS: Five patients with dystrophic EB were treated with sucralfate suspension for the prevention and management of oral blisters. Oral blisters were assessed using a quantitative scale, while pain was assessed using visual analogue scale (VAS), and hygiene was evaluated through plaque and gingival indexes. RESULTS: The number of blisters, oral pain, and plaque decreased in all cases. CONCLUSIONS: Oral prophylaxis with sucralfate prevented oral blisters and oral discomfort. The procedure proved to be cost effective and easy to administer. It did not show significant side effects and may be used routinely in patients with EB.
