Chewing and Swallowing Training Program in Coffin-Lowry Syndrome: A Case Report
试验速览
- 阶段
- 不适用
- 状态
- 已完成
- 入组人数
- 1
- 试验地点
- 1
- 主要终点
- Instrumental swallowing evaluation
研究概览
简要总结
This study will report the chewing and swallowing disorders of a Coffin-Lowry Syndrome (CLS) patient, and effects of chewing and swallowing training on chewing and swallowing function.
详细描述
Patients with CLS suffer from spinal deformities, nonconvulsive status epilepticus, obstructive sleeep apnea syndrome, pneumonia, stimulus-induced myoclonus, cases of falls, mechanical ventilation, restrictive lung disease. It was also reported that patients with CLS had problems with eating and feeding functions. However there is no study investigating chewing and swallowing functions of this patient population. Therefore, the investigators have three main purposes:
- To chewing and swallowing function in a boy with CLS diagnosis who was referred due to coughing during eating, long-lasting wheezing, sputum and inability to intake solid food
- To investigate the effects of two months of chewing and swallowing training program
- To present long term follow-up effects on chewing and swallowing function.
研究设计
- 研究类型
- Interventional
- 分配方式
- Na
- 干预模型
- Single Group
- 主要目的
- Treatment
- 盲法
- None
入排标准
- 年龄范围
- 3 Years 至 3 Years（Child）
- 性别
- Male
- 接受健康志愿者
- 否
入选标准
- •Having a diagnosis of CLS
- •Having a history of coughing during eating, long-lasting wheezing, sputum
- •Inability to intake solid food.
排除标准
- •No history of coughing during eating, long-lasting wheezing, sputum
结局指标
主要结局
Instrumental swallowing evaluation
时间窗: 6 months
Videofluoroscopic Swallowing Evaluation (VFSE) will be performed. The swallowing physiology will be evaluated by using 3 ml of liquid and pudding barium during the VFSE. The Penetration and Aspiration Scale (PAS) will be used to determine penetration and aspiration severity, which is scored between 1 to 8. The score of PAS 1 means 'No aspiration', scores from 2 to 5 indicate 'Penetration', and scores from 6 to 8 indicate 'Aspiration'. High score indicates bad situation.
次要结局
- Swallowing screening(6 months)
- Chewing evaluation(6 months)
研究者
Ayşe Kübra Şahan
Principal investigator
Hacettepe University