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如何拉住罕見病小胖威利情緒的韁繩?

2023-05-29 23:04 作者:小胖威利關(guān)愛中心  | 我要投稿

在幼兒時期發(fā)脾氣不容易被忽視,而所有年齡段的小胖威利患者會經(jīng)常完全崩潰。日常生活的改變,感官超負(fù)荷運作,無法表達(dá)自己的焦慮或情緒都可能會是導(dǎo)致嚴(yán)重崩潰的觸發(fā)因素。崩潰可能會持續(xù)幾個小時,讓家人筋疲力盡。


精神崩潰期間的行為有拒絕交流或移動、無法控制的尖叫、自殘、暴力和哭泣。由于小胖患者可能高度焦慮,他們經(jīng)常處于崩潰的邊緣,有時似乎沒有什么原因。看護(hù)者必須時刻保持高度警惕,識別觸發(fā)因素,并在事態(tài)升級之前進(jìn)行干預(yù)。


練習(xí)一些應(yīng)對壓力的技巧可能會有幫助。例如,緩慢的深呼吸、數(shù)數(shù)、撕紙、聽音樂、彈力球等。如果在小煩惱時經(jīng)常練習(xí),隨著時間的推移,它可能會在大煩惱時被記住。


除了發(fā)脾氣,行為問題還包括覓食、爭吵、固執(zhí)、控制、抗拒改變、一遍又一遍地談?wù)撏粋€話題、尋求關(guān)注、撒謊/操縱行為和強(qiáng)迫行為。


行為管理應(yīng)以預(yù)防和干預(yù)為導(dǎo)向。小胖威利患者對幽默、善良、友愛、禮貌和主動的人的互動反應(yīng)良好。


本譯文僅供參考,只有英文原稿才可以被視為權(quán)威資料來源。


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.


關(guān)于小胖中心


小胖威利罕見病關(guān)愛中心(中國小胖威利協(xié)會)的建立是為了中國十萬個小胖家庭、科研人員、臨床醫(yī)生和護(hù)理人員可以交流信息和支持,并在一個大傘下發(fā)出統(tǒng)一的中國聲音。

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一點關(guān)懷,

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心有陽光,

人間便處處得見溫暖。

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