陳媽媽的故事分享2014-02-14

   「奕璇是一位漂亮活潑的小女孩,出生沒多久即診斷為藥物型苯酮尿症,父母得知有如晴天霹靂,但後來在牛道明醫師的鼓勵下,每日按時吃藥,奕璇得以正常的成長。但是在奕璇兩歲時,弟弟出生了,奕璇這時開始抗拒吃藥,她常和父母爭辯弟弟為什麼不用吃藥而她要吃藥?這使得奕璇的父母非常煩惱,因為不吃藥對於藥物型苯酮尿症會有很大的影響,沒有藥物的控制會出現抽筋、痙攣、類似巴金森氏症的症狀。後來有一次弟弟因感冒也必須吃藥,奕璇看到弟弟生病時也必須吃藥就漸漸釋懷了。現在奕璇六歲了,每天服藥兩次,雖然偶爾還是會耍性子拒絕吃藥,但是在父母耐心的勸說之下,奕璇最後總是乖乖的把藥吃了。




 

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