In a 10-week randomised cross-sectional study we used an 88-item questionnaire to assess the quality of life in 16 children (ages 8-17 years) with Crohn's disease and their families. The questionnaire covered six domains of health-related quality of life, including disease and its treatment, social, emotional, family, education, and future aspects. Crohn's disease affected education, with absenteeism in 12 and distraction during school work in six. Three children had had a home tutor, and five stated their need for one. Engaging in sports was a problem for eight children, mainly because of a lack of energy in five and the presence of a stoma in three children. Three children had missed every PE lesson in 1 year. Five children cited the social problem of being unable to stay over at friends' houses. Bullying concerned parents more than the children. Holiday difficulties included long distance traveling or lack of toilet facilities during school trips. Elemental diet was the preferred treatment, although the majority complained about the taste. Surgery was the most effective method of symptom control, though the resulting stoma was upsetting and restricted sports activities. Children on steroids had more depressive symptoms. Using the Rutter A Questionnaire, five children were designated "neurotic." Parents' views of the severity of symptoms significantly correlated with their children's views regarding rectal bleeding, poor growth, lack of energy, and poor appetite (p < 0.01). The main parental concerns were the side effects of medications and issues concerning their children's future, including schooling, job prospects, and marriage. The parents of 11 children cited problems with children's behaviour. The parents of seven cited disruption of work, and those of six named taking holidays. Crohn's disease in children, in addition to being a symptomatically disabling condition, has a great impact on the health-related quality of life of both sufferers and their parents. The questionnaire was a useful instrument, and with some adjustment it can be used again in large group studies.
ALF should be considered in any young infant with a coagulopathy as transaminases and/or bilirubin levels can be near normal at presentation. Better intensive care and the judicious use of liver transplantation may have contributed to the improved outcomes for this group compared with previous decades.
Whether antireflux surgery should be routinely performed at the time of gastrostomy in children with neurological disorders is debatable because of the risk of gastroesophageal reflux. Some argue that these children should be screened for occult gastroesophageal reflux as this will determine the need for fundoplication. This study retrospectively examines outcome in 29 children with neurological disorders who underwent percutaneous endoscopic gastrostomy (PEG) without concomitant fundoplication. Children were included if they had no clinical evidence of severe gastroesophageal reflux before PEG insertion. The median age of children at PEG insertion was 5.6 years (range 1.1 to 18.0). The children were followed for a median of 2.6 years (range 0.4 to 4.9). Insertion of PEG was technically impossible in two children; and an asymptomatic gastrocolic fistula in another child led to subsequent tube removal. Fourteen of the 26 remaining children developed symptomatic gastroesophageal reflux after PEG; five of these showed no reflux on pH monitoring prePEG. Control of symptoms was achieved by medical intervention in 12, but two required fundoplication. Our findings indicate that in the child with neurological disabilities without symptoms indicating severe gastroesophageal reflux, fundoplication is unlikely to be necessary as a consequence of PEG insertion. We conclude that routine investigation for gastroesophageal reflux in the child without severe vomiting can be avoided and the number of antireflux procedures reduced.
Whether antireflux surgery should be routinely performed at the time of gastrostomy in children with neurological disorders is debatable because of the risk of gastroesophageal reflux. Some argue that these children should be screened for occult gastroesophageal reflux as this will determine the need for fundoplication. This study retrospectively examines outcome in 29 children with neurological disorders who underwent percutaneous endoscopic gastrostomy (PEG) without concomitant fundoplication. Children were included if they had no clinical evidence of severe gastroesophageal reflux before PEG insertion. The median age of children at PEG insertion was 5.6 years (range 1.1 to 18.0). The children were followed for a median of 2.6 years (range 0.4 to 4.9). Insertion of PEG was technically impossible in two children; and an asymptomatic gastrocolic fistula in another child led to subsequent tube removal. Fourteen of the 26 remaining children developed symptomatic gastroesophageal reflux after PEG; five of these showed no reflux on pH monitoring prePEG. Control of symptoms was achieved by medical intervention in 12, but two required fundoplication. Our findings indicate that in the child with neurological disabilities without symptoms indicating severe gastroesophageal reflux, fundoplication is unlikely to be necessary as a consequence of PEG insertion. We conclude that routine investigation for gastroesophageal reflux in the child without severe vomiting can be avoided and the number of antireflux procedures reduced.
be understood to build resilience post-COVID-19 -from new coping strategies, family connections, accessing support services, the importance and reliance on peer support and peer power, and the need for more culturally-responsive policies for young people; changes that respond sensitively to the emotional and mental wellbeing of Black and Asian young people.
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