如何拉住罕见病小胖威利情绪的缰绳？
在幼儿时期发脾气不容易被忽视，而所有年龄段的小胖威利患者会经常完全崩溃。日常生活的改变，感官超负荷运作，无法表达自己的焦虑或情绪都可能会是导致严重崩溃的触发因素。崩溃可能会持续几个小时，让家人筋疲力尽。
精神崩溃期间的行为有拒绝交流或移动、无法控制的尖叫、自残、暴力和哭泣。由于小胖患者可能高度焦虑，他们经常处于崩溃的边缘，有时似乎没有什么原因。看护者必须时刻保持高度警惕，识别触发因素，并在事态升级之前进行干预。
练习一些应对压力的技巧可能会有帮助。例如，缓慢的深呼吸、数数、撕纸、听音乐、弹力球等。如果在小烦恼时经常练习，随着时间的推移，它可能会在大烦恼时被记住。
除了发脾气，行为问题还包括觅食、争吵、固执、控制、抗拒改变、一遍又一遍地谈论同一个话题、寻求关注、撒谎/操纵行为和强迫行为。
行为管理应以预防和干预为导向。小胖威利患者对幽默、善良、友爱、礼貌和主动的人的互动反应良好。
本译文仅供参考，只有英文原稿才可以被视为权威资料来源。
英文原文
PWS AND TANTRUMS
Temper tantrums don't get left behind in early childhood. People with PWS of all ages often have full scale meltdowns. Changes in routine, sensory overload, inability to express his/her anxiety or emotions are just a few examples of triggers that may cause a major meltdown. Meltdowns can last for several hours leaving family members utterly exhausted.
Behaviours during a meltdown can include refusing to communicate or move, uncontrollable screaming, self-harm, violence and crying. As people with PWS can be highly anxious they are often on the edge of a meltdown, sometimes with seemingly very little cause. Caregivers must be on high alert at all times to recognise triggers and intervene before the situation escalates.
It may help to practice some stress coping skills. For example, slow deep breathing, counting, ripping up paper, listening to music, sensory balls, etc. If practiced often during minor upsets, over time it may be remembered during major meltdowns.
Apart from tantrums, behavioural issues can include foraging, arguing, stubbornness, controlling, resistance to change, perseveration (talking about the same subject over and over), attention seeking, lying/manipulative behaviours and obsessive-compulsive behaviours.
Behaviour management should be intervention/prevention orientated. People with PWS respond well to good humour, kindness and affection, respect and positive interactions.
关于小胖中心
小胖威利罕见病关爱中心（中国小胖威利协会）的建立是为了中国十万个小胖家庭、科研人员、临床医生和护理人员可以交流信息和支持，并在一个大伞下发出统一的中国声音。
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公益捐款渠道
一点关怀，
或许就能为一个病人创造希望。
心有阳光，
人间便处处得见温暖。
