我女兒的第一次精神病發作 | My Daughter’s First Episode of Psychosis
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發佈日期：2021 年 5 月 12 日
作者：Brittany Miles
兩年前，夏天在我 11 歲的女兒順利完成學年的喜悅中展開。Jamie 因重度憂鬱症與焦慮症缺課數月後，於學年中期重返校園。
在這個沉重的診斷之後，我請了家庭醫療假來照顧她。我與她的精神科醫師、心理治療師及學校行政人員密切合作，制定了一套周全的返校計畫。配合藥物與治療，我以為她正在好轉。我們替她辦了「歡迎回來派對」，朋友們再次來家裡過夜。到了學年結束時，她看起來很快樂，也準備好迎接青春期前的生活。
第一次發作
某天早上，我發現女兒坐在房間裡，目光呆滯地凝視著前方。Jamie 望著空氣，彷彿同時看見了某些東西，又什麼都沒有。我的直覺告訴我，這可能是憂鬱症復發的徵兆，但實際發生的事情遠比我想像的嚴重。Jamie 無法被勸離房間。我邀她和我們的吉娃娃一起出去散步，她拒絕了，並說「不安全」，卻說不出原因。她的眼睛來回掃視，好像看見了我看不見的東西。這已經不同於憂鬱症，我開始為我的孩子感到害怕。
Jamie 的身體癱軟，蜷縮成胎兒姿勢躺在床上。她讓我靠近，我伸手抱住她，希望我的陪伴能安撫她。我輕聲問她看見了什麼，她說：「媽媽，你看不到他們嗎？他們都在那裡。」她指著天花板說：「他們在嘲笑我。不要再取笑我了！」她顫抖、流淚，摀住耳朵。我幾乎無法呼吸，恐懼瞬間吞噬了我。這不是上網搜尋或打給護理專線就能解決的事，這是我從未見過的狀況。後來我才知道，Jamie 經歷的是「首次精神病發作」（First Episode of Psychosis, FEP）。
我立刻打電話給她的精神科醫師，我們親切地稱他為「D 醫師」，向他說明這個新出現的症狀。他開始感到擔憂，並提到可能還有其他前驅症狀。所謂前驅症狀，是指疾病即將發生的早期徵象。考量到她同時有閱讀障礙與 ADHD，我問他這是否代表雙相情緒障礙或思覺失調症的開始。他並未下定論。D 醫師本性謹慎，不願過早下診斷。身為「媽媽醫師」——處理孩子擦傷、燙傷與皮疹的那個人——我渴望有一帖藥膏能治癒這個新出現的問題。我理解他的做法，但我知道，Jamie 需要的幫助遠超過我能提供的。
第二次發作
某個看似平常的下午，我在地下室洗衣服時，Jamie 的尖叫聲響徹整棟房子。那聲尖叫是我從未聽過的，連她幼年時的情緒崩潰都無法相比。我發現她赤裸地躲在走廊的儲物櫃裡。我不確定是什麼觸發了她，或許是外面孩子的聲音，或是割草機、垃圾車等日常噪音讓她過度刺激。無論如何，她徹底崩潰了。她的尖叫原始而激烈，音量與頻率不斷攀升。
我第一個念頭竟然是：「鄰居會怎麼想？」可悲的是，這種想法在有精神疾病家人的家庭中非常常見。你想保護家人，尤其是孩子，不被旁人窺探。Jamie 持續一遍又一遍地喊著「不要」。我滑坐在牆邊，坐在儲物櫃門口。我們唱著傻氣的歌，直到她慢慢平靜下來。母親的觸碰具有療癒力量，我輕輕地搖著她。淚水從她靈魂深處湧出，我能感受到她的恐懼。我陪著她一起哭。等我哄她睡著後，我打電話給醫師；我們一致認為，我已無法獨自應付她的症狀。當晚，我帶她去了急診室。
我對住院的期待，是能獲得對她病情的第二意見。然而，我為醫院設定了他們無法滿足的期待。醫院的目標是穩定孩子的狀況、以治療支持危機，並提出用藥建議。在我們的情況中，Jamie 在五天內穩定下來，接受了一些治療，但沒有新增藥物。主治醫師同意她原本精神科醫師的診斷，並鼓勵她在秋天重返學校。
我震驚於她的精神病症狀竟未被視為迫切的問題。大家急著讓她回到學校，以恢復「正常」。但我的孩子正在受苦——她迷失了方向，卻沒有人認為這是問題。母性的憤怒湧上心頭：怎麼能用輕描淡寫的方式，結束這場花費五萬美元的住院？很明顯，她短期內根本無法回到學校。Jamie 需要全方位的支持服務，才能在日常生活中生存下去。
我們的家庭正在面對一個從未見過的怪物。為孩子找到正確的治療、診斷與藥物，可能帶來截然不同的結果。我們仍在旅程的起點；Jamie 現在正在接受相關服務，這些服務可能會深刻改變她的人生。雖然前方的道路仍然漫長，但我們對復原仍抱持希望。
Brittany Miles 畢業於威廉斯學院，是一名專精於電子商務的產品開發顧問。她曾任職於 Microsoft Outlook Calendar、Starbucks 與 T-Mobile，參與打造我們日常使用的客戶介面。她同時也是《Miles to Go with Brittany Miles》節目的主持人，該節目隸屬於收聽率第一的 Transformation Talk Radio Network。Brittany 亦於全國精神疾病聯盟（NAMI）從事公共政策與倡議志工工作。她是 13 歲女兒的母親，現居西雅圖。
Date Published：May 12, 2021
Author：Brittany Miles
Two years ago, summer began on the heels of my 11-year-old daughter thankfully finishing the school year. Jamie returned to school mid-year after missing months due to major depressive disorder and anxiety.
I took family medical leave to care for her after this crushing diagnosis. Coordinating with her psychiatrist, therapist and school administration, we crafted a solid plan to get her back into school. Along with medication and therapy, I thought she was getting better. We hosted a “welcome back party” with her friends and the sleepovers started anew. By the end of the school year, she was happy and ready to be a pre-teen.
The First Episode
One morning, I found my daughter in her room with a fixed gaze. Jamie stared into space looking at something and nothing at the same time. My instinct detected the signs of a potential depressive episode, but what was happening was more than I realized. Jamie couldn’t be coaxed out of her room. I asked her to join me on a walk with our Chihuahua, and she refused. She said, “It wasn’t safe” and couldn’t say why. Jamie’s eyes swept back and forth as if she could see something I couldn’t. This was different than depression, and I was afraid for my child.
Jamie’s body was limp and curled into a fetal position on her bed. She let me come closer, and I reached out to embrace her. I hoped my presence would soothe her. Gently, I asked Jamie to describe what she was seeing, and she said, “Can’t you see them Mama? They’re all up there.” She pointed to the ceiling and said, “They’re laughing at me. Stop making fun of me!” Shaken and teary-eyed, she covered her ears. I couldn’t breathe. I was overtaken by fear. What was happening wasn’t a quick Google search or a call to the nurse line. This was something I hadn’t seen before. Later I learned what happened to Jamie is a first episode of psychosis (FEP).
Immediately I called her psychiatrist, affectionately known as “Doctor D,” to discuss this new symptom. He became concerned and told me there may be other prodromal signs. Prodromal signs or symptoms indicate the onset of a disease. Worried about the comorbidities of dyslexia and ADHD, I asked if this was the start of bipolar disorder or schizophrenia. He shied away from making the call. Innately a conservative provider, Doctor D was cautious not to make a premature diagnosis. As doctor Mom — the healer of scrapes, burns and rashes — I wanted a balm for this new thing in our lives. I understood Doctor D’s approach, however, I knew Jamie needed more help than I could provide.
The Second Episode
On a relatively normal afternoon, I was doing laundry in the basement when Jamie’s scream rang through the house. She screamed like I’ve never heard before; her toddler tantrums paled in comparison. I found her naked in our hall closet. I’m not sure what set her off. Perhaps she became overstimulated from the kids outside or the everyday sounds from lawnmowers and trash trucks. Either way, she flipped out. Her screams were primal and rising in cadence every second.
My first thought was “What will the neighbors think?” Sadly, this mindset is predominant in families with loved ones living with mental illness. You want to shield your family, and especially your child, from prying eyes. Jamie continued to scream, “no” over and over. I slid down the wall to sit by the closet door. We sang silly songs until she calmed down. A mother’s touch is healing, so I gently rocked her. Tears flowed from the depths of her soul. I could feel her fear. I wept alongside her. After persuading Jamie to nap, I called the doctor; we agreed I could no longer manage her symptoms. I took her to the ER that night.
My hope for her hospitalization was getting a second opinion on her case. Unfortunately, I created expectations the hospital couldn’t meet. Hospitals seek to stabilize children, support the crisis with therapy and make medication recommendations. In our case, Jamie stabilized in five days, received some therapy and no new medication. Her attending physician agreed with her psychiatrist’s diagnosis and encouraged her to go back to school in the fall.
I was dumbfounded that her psychosis was not an immediate cause for concern. There was pressure to get her back into school to regain normalcy. My child was hurting — she was lost. No one thought there was a problem. Maternal rage flooded me; how dare they tie up her $50,000 hospital stay with a pat on the head? It was evident she wasn’t going to be ready for school anytime soon. Jamie needed wraparound services to help her survive day-to-day.
Our family is facing a monster we’ve never seen. Getting your child the right treatment, diagnosis and medication can make all the difference. We’re still at the beginning of our journey; Jamie is now receiving services which could change her life tremendously. While there’s still a long road ahead of us, we’re hopeful for recovery.
Brittany Miles is a graduate of Williams College and a Product Development Consultant specializing in E-commerce. She has worked for Microsoft – Outlook Calendar, Starbucks and T-Mobile crafting the customer interfaces we use on a daily basis. She is also the host of Miles to Go with Brittany Miles on the number one rated The Transformation Talk Radio Network. Brittany volunteers for the National Alliance on Mental Illness in public policy and advocacy. She is the mother to her 13-year-old daughter and lives in Seattle.
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