大麻救了她,武漢病毒殺了她
一個改變大麻政策小女孩的故事
美國科羅拉多州的小女孩夏洛特(Charlotte Figi),她出生後不久後被診斷出一種罕見的癲癇疾病「卓飛症候群」(Dravet Syndrome)。到3歲時,儘管服用了7種不同的藥物,但每週都要經歷300次如地獄一般的癲癇發作。
夏洛特在被診斷出卓飛症候群後嘗試了許多正規或偏門的治療方式,從飲食、針灸到藥物各種方法都試過了,但病情始終毫無起色,有些藥物甚至差點害她送命。
夏洛特的爸爸麥特,某天在網路上搜尋到一支影片,內容是一個小男孩透過大麻來緩解癲癇症狀,於是他開始與妻子討論要給夏洛特嘗試大麻,但他的妻子佩吉則是面有難色的遲疑。直到夏洛特的病情每況愈下,他們也嘗試過除了大麻之外的所有方法都無效,才真正開始考慮給夏洛特服用大麻的可能性。
然而,要給夏洛特服用大麻卻也並非易事,因為當時美國大部分在市面上流通的大麻都是屬於高THC成分,這是大麻裡面主要會讓人感到興奮的物質,而夏洛特需要的卻是大麻中另一種大麻素CBD,它沒有娛樂效果,是可以讓大腦鎮靜的成分。
對於夏洛特的父母來說,讓夏洛特服用大麻不是一個決定,而是剩下唯一可以實行的選擇。夏洛特的父母在當地大麻店找到高CBD的品種,並請人從中提取出CBD的成分讓夏洛特能口服,在她服用過,治療效果非常驚人。在第一次服用大麻當天甚至隔了好幾天,夏洛特完全沒有發病,若是在先前的狀態,夏洛特可能已經發病好幾百次了。
2012年秋天,夏洛特嘗試了由科羅拉多州從事大麻生意多年的史丹利家族所研發,一種非常罕見的醫療大麻品種,含有21%CBD、1%THC,這正是夏洛特父母要找的東西。在用了這款大麻後,原本一個禮拜癲癇會發作300次,變成一個禮拜只發作一次,夏洛特的病情再次因為大麻得到顯著的改善。她開始可以不用依賴餵食管,可以自己吃飯,也開始可以講話甚至走路,連主治醫師都肯定大麻的療效。
在美國聯邦層級,大麻仍是一級管制藥物,科學家要得到批准研究大麻非常困難,但仍有許多學者正在努力,希望造福許多正在受苦的病患。女童夏洛特就是一個令人振奮的例子,看到她能夠因為大麻而逐漸康復,開始正常生活無疑是一件令人開心的事情。
當初史丹利兄弟給她服用的大麻品種,也正式以這位5歲小女孩來命名為「夏洛特的網」(Charlotte’s Web),近來年已有許多名罹患「卓飛症候群」的孩子在美國科羅拉多州使用這種大麻,得到非常好的治療效果。
雖然夏洛特的疾病因大麻得到緩解,然而卻在2020年這波武漢肺炎疫情中不幸逝世,得年13歲。如果官方證實死因,她將是科羅拉多州最年輕的死於新型冠狀病毒的人。
大麻品種「夏洛特的網」發明者史丹利兄弟得知死訊後,在官網向夏洛特致敬:「她是一盞照亮世界的燈。她是一個小女孩,把我們全都扛在了她的小肩膀上。她在一整個社群的愛與保護下成長茁壯,她讓世界見證了她的苦難,敦促世人找到解決的辦法。她每天都挺身而出,以她的勇氣和微笑喚醒人們內心的良知。」
-----------------補充說明-----------------
在本文引發廣大關注後,網路上有些討論質疑夏洛特是否真因新冠肺炎(武漢肺炎)而死?目前多家具有公信力的媒體報導都指出其死因「很可能」就是新冠肺炎,紐約時報最新的報導也指出:「夏洛特的父母證實了她的死亡,病因很可能是與新冠肺炎(Covid-19)有關的併發症,一種由新型冠狀病毒引起的疾病。夏洛特媽媽表示,雖然夏洛特對新冠病毒的測試呈現陰性,但接受測試的時間點來得太晚了。(紐時註解:假陰性是當前冠狀病毒測試中的一個已知問題)」
Her death was confirmed by her parents, Paige and Steven Figi, who said the cause was most likely complications related to Covid-19, the disease caused by the new coronavirus.
Ms. Figi said that Charlotte’s test for the coronavirus came a month too late. (False negatives are a known problem with the current coronavirus tests.)
資料來源:https://www.nytimes.com/20…/…/09/us/charlotte-figi-dead.html
紐約時報先前也曾發表專文指出,假陰性是當前冠狀病毒測試中的一個已知問題,目前的檢測可能存在很高的漏檢率,結果呈陰性不代表沒有感染。假陰性的檢測結果——即你已經被感染,但檢測表明你沒有——似乎是十分常見的現象。
為何新冠病毒檢測會出現「假陰性」:
https://cn.nytimes.com/…/coronavirus-symptoms-test…/zh-hant/
在此我們也貼出夏洛特的媽媽4/7所發出的公告:
「我們想澄清一些信息。從3月初開始,我們全家都生病了近一個月,但最初並不符合所有新冠肺炎測試標準。因此,除非症狀加重,否則我們被告知在家進行自我治療。夏洛特的症狀卻加重了,因此她於4月3日被送入小兒科加護病房。她使用了已製定的所有醫療規程,在新冠肺炎指定的樓層接受了治療。在4月3日(星期五)接受了測試,結果新冠肺炎檢測陰性,並在4月5日(星期日)開始好轉時出院。然而夏洛特於4月7日凌晨再度發作,導致呼吸衰竭和心臟驟,癲癇並不少見於此類疾病,醫護人員又將夏洛特送回小兒科加護病房。考慮到我們一家人一個月的病史,儘管檢查結果陰性,夏洛特仍被視為可能的新冠肺炎病例。」
We’d like to clarify some of the information that has been shared. Our entire family had been ill for close to a month starting early March, but did not initially fit all of the criteria for COVID-19 testing. For that reason, we were told to self-treat at home unless the symptoms worsened. Charlotte’s symptoms worsened, so she was admitted to the PICU on April 3rd. She was treated on the COVID-19 designated floor using all of the medical protocols set in place. On Friday April 3rd, she was tested, the results were negative for COVID-19 and discharged on Sunday April 5th when she seemingly began to improve. Charlotte had a seizure in the early morning on April 7th resulting in respiratory failure and cardiac arrest. Seizures are not uncommon with illness and paramedics were called returning us to the PICU. Given our family’s month-long history with illness and despite the negative test results, she was treated as a likely COVID-19 case.
資料來源:https://www.facebook.com/paige.figi/posts/10157904490519765
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seizure cause 在 Jenn’s 沬厤 Life After Cancer #spreadlovecreatehope Facebook 的最佳解答
Don’t overdo it. Moderation is the key! Too much of water intake can cause seizure!!
#mustshare
Seriuslah selama ni Min ingat lagi banyak kita minum air kosong, lagi bagus. Ni dah 3 doktor bagitau kalau tak percaya gasaklah hengkorang ya #erinsakura
seizure cause 在 Patricia K Facebook 的最佳解答
It’s Halloween and we were all so excited to dress up as a family this year!!🎃
Sadly Matt had to fly to HK last minute for work and Soph suddenly had a fever since midnight 🥺.
I’m sharing my experience that happened back in February this year because I was reminded last night how traumatic it was and maybe if it could help others.
I sat up all night patting her down with a cold towel to bring down her fever and I gave her medicine at 4 A.M.
Back in Feb, she had a fever too, she slept next to me so I could monitor her and I used a cold cloth to keep her cool.
Suddenly at 6 A.M, I hear her say “mummy” and she suddenly went straight into shaking violently and uncontrollably.
I knew it was seizure, so I grabbed her and sprinted to the bathroom, ran water in the bath + splashed cold water from the sink on her head. I was panicking, but in auto pilot mode. Her eyes were rolled back in her head and she was still shaking, what probably was 2-3 min, felt like an hour. I ran to the guest room and got Matt and we both helped to cool her down in the bathtub. She was limp in the bath and was having after shakes. I was of course a complete mess, luckily Matt was super calm. We both dressed her, and noticed she wasn’t able to stand or pick things up etc. I had the worst thoughts, maybe that her brain had fried or something. We got to Prince Court and they managed to bring her to her normal self within an hour, an insert into the bum, she was then sitting up happily eating a lollipop. Wow. What a relief and shock.
The results came back and turns out she had Influenza A. It meant the next 4 days in the hospital. I slept with her, Matt slept on the floor + ran around getting everything we needed. My mom and Uncle Chen came by every day with home cooked food and love.
Soph recovered and we happily went home to spend another week together.
Febrile seizures are super scary, but they're fairly common and not usually a symptom of serious illness. Just make sure to be there with them and keep calm. Once it is over, go to the nearest hospital to find the cause. I didn’t share it as we wanted privacy and to spend time with her.
Man, motherhood is tough guys 😖x
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