如果有一種方法
可以讓我們的孩子不用再痛苦抽痰
我想我們這些作家長的無論如何都願意嘗試
從國外病友討論區得知了CoughAssist之後
我們這些長期需要呼吸治療的孩子們
似乎出現了新的希望
以下是討論區相關內容的摘要翻譯:(我不是專業,翻譯僅供參考,有誤解歡迎告知)
1.Minimum age to use: i think opinion varies from doctor to doctor but our Sam has been using it daily (4-12x a day) since he was 3 months. he never had an issue with it and it has definitely saved his life on more than one occasion.
(最低使用年齡: 我想不同的醫生有不同的見解,但我們家山姆從三個月大開始每天使用,一天用個4到12次,使用上從來有什麼問題.這個機器肯定已經救了山姆很多次)
2.Adam started using the Cough Assist machine as young as age 2. He uses it daily for maximal insufflation/exsufflation of his lungs. It's like chest ROM to maintain flexibitly in the chest. It works by pushing air into a mouthpiece, face mask or trach adaptor into the lungs. It then sucks air out of the lungs. Simone hit the nail on the head that it is for people who have a weak cough. It works great to clear the lobes of the lungs that are missed during most suctioning.
(亞當從兩歲開始用咳嗽機,他每天使用來幫助肺得到最大的灌氣與抽氣.這就像是透過復健時肺部的擴張與回縮來維護胸腔彈性,它首先將空氣透過吹口/面罩/氣切接口推進肺部,然後再將空氣吸出來.席夢說得對,這是針對無力咳嗽的人所設計的.對於大部分抽痰無法處理的肺部深處,他的效果極佳.)
3.it is more effective at clearing mucous secretions in kids with neuromuscular disease than albuterol and chest percussions. The reason for this is that those techniques help with secretions in the very lower branches of the lungs - where our kids don't have problems (their mucociliary elevators are intact). When you get to the 12 or so upper branches is where our kiddos have the trouble - they simply cannot cough the stuff up. Because most invasive suctioning only suctions one lobe of the lungs, the cough assist is GREAT to use with kids who are trached so that you can get complete airway clearance.
(對於神經肌肉病童的痰液等分泌物清潔問題,這機器比起氣管擴張劑還有拍痰還要來得有效.原因是傳統的拍痰技巧主要是對於較深的氣管分支,但我們的孩子的黏液纖毛運動是正常的,問題不在那邊,在肺部呼吸道第12層之上更淺的分支才是他們的問題所在,因為他們無法把那邊的痰咳出來.大部分侵入式的抽痰只能抽一邊的肺,而咳嗽機對於幫助氣切的孩子保持呼吸道清潔,有非常好的效果.)
*關於是否真的深層氣管完全沒問題,呂立醫師持保留態度,他認為有些人在反覆感染或肺部塌陷的情況下,深層氣管還是有影響。
4.For many, many patients using the cough assist machine allows for sufficient airway clearance and is not associated with the RISKS that come when our kids are given oxygen. (Dr. Bach feels that giving oxygen to our kids can be very DANGEROUS and cautions against it heavily - see his explanation at his website at www.doctorbach.com)
(對於許許多多使用咳嗽機來保持呼吸道清潔的病人而言,他們可以不需要面對因為氧氣不當供應所產生的風險.巴哈博士對此有非常強烈的警告,詳情參見www.doctorbach.com)
5.Using the cough assist machine and pulse ox at home we have been able to successfully manage Adam without hospitalization during acute respiratory illness. I have seen him with low sats (in the high 80's) and after a lot of work with the cough assist machine accompanied with a belly/diaphragmatic thrust (to maximize expiratory pressure) he has cleared several mucous plugs safely and effectively at home.
(透過咳嗽機與血氧監測機,我們在急性呼吸疾病時可以自己照顧亞當,而不需要住院.我們曾在他血氧濃度最高只到80時,努力不懈地透過咳嗽機與一種推腹部/橫隔膜的技巧,在家裡安全有效地把許多痰塊清出來.)
6.a common error that most people do with the Cough Assist machine is set the pressure too LOW. The pressure must be set at least at 40 to get effective movement.
(關於咳嗽機使用的常見錯誤,就是把壓力設得太低.壓力至少要設到40才夠)
7.When Adam is VERY sick with sats in the 80's I still will do chest percussions and nebulizers. Research shows that albuterol increases cilliary movement in the lungs and it can help open airways that are irritated by mucous and infection. Dr. Bach really feels that meds and chest PT are not that necessary and that they are a waste of time, unless the child has low sats that can not be brought up by mechanical ventilation alone. The most important thing with the Cough Assist machine is to set the setting high enough to actually create enough pressure to be effective at clearing the lungs. When we first started, we were using 20/20 presure (inspiration/expiration) and it was basically useless. At a follow up appointment a YEAR later Dr. Bach told us to go to 40/40.
(當亞當病得很重,血氧只到80時,我還是會拍痰,還是會用噴霧器.研究顯示氣管擴張劑可以促進纖毛運動,也可以幫助打開被黏液(分泌物、痰)與感染刺激(而收縮)的呼吸道.巴哈醫師認為這些藥跟拍痰都不是必要的,除非孩子血氧實在太低而單靠呼吸器的幫助仍然不足,否則都只是浪費時間..關於咳嗽機,最重要的還是要將壓力設得夠高,才足夠有效清潔肺部.一開始時我們設定吸入/吐出的壓力在20/20,基本上那沒什麼用.一年後與巴哈博士的回診,他要我們調到40/40)
*這一點呂立醫師不是很同意,他還是認為拍痰與吸藥,還是有其重要性與作用。
8.We just got are cough assist machine 2 weeks ago. My son Justin was in the hospital with a mild case of Pneumonia that started with a throat infection. We all were amazed including the Respiratory therapists at the hospital when we saw how much stuff we were able to get out of Justin his first time using it. We had been doing Nebs, CPT and Suctioning but this worked so well, it reduced the amount of suctioning we had to do and he was out of the hospital 2 days earlier than his usual 7 day stays in the past.
(我們兩週前剛拿到咳嗽機,我兒子賈斯汀當時正因喉嚨感染引發的輕度肺炎而住院.當我們在醫院第一次使用咳嗽機時,對於他可以抽出那麼多的東西,我們與呼吸治療師都感到非常驚訝.我們一直都有在用噴霧氣,拍痰,抽痰,但是咳嗽機實在好用.他減少了抽痰的次數,而且以前他通常要住院7天才能出院,這次少了2天)
9.It seems that, based on the postings, a lot of you use the Vest and/or the Cough Assist, and with good results. What I am also gathering from your feedback, is that most of your kids HATE these treatments, and they seem very harsh (even though they get the job done). I also noticed that we are the only ones who have stated that we use the IPV to aggressively to clear mucous/secretions.
(從前面的文章看起來,似乎你們很多都使用Vest(震動背心)跟咳嗽機,而且效果不錯.不過我也看到你們很多人都說,你們的孩子討厭死這些東西了,這些東西好像很暴力(雖然使命必達).我也注意到了只用我們在使用IPV來積極清理痰液)
是否CoughAssist真的那麼有效?
為何台灣代理多年卻無法推廣?
這個月的試驗希望可以帶來一些答案
晴晴今天以15/15的壓力牛刀小試
還真的把一些痰引了出來
不過她真的很不喜歡 (我想她不喜歡任何在臉上的東西)
但比起抽痰 這實在好太多了
我知道有不少家屬很感興趣
因為這可能會改善不少神經肌肉病友的生活品質
所以這個月我會幫晴晴作完整的紀錄
大家可以看看效果如何
有興趣再來一起與廠商談談
另外
因為許多國外病友也很感興趣
繼上次MTM電話會議之後
近期內也打算要辦CoughAssist的電話會議
屆時我會再公佈內容與翻譯
可以讓我們的孩子不用再痛苦抽痰
我想我們這些作家長的無論如何都願意嘗試
從國外病友討論區得知了CoughAssist之後
我們這些長期需要呼吸治療的孩子們
似乎出現了新的希望
以下是討論區相關內容的摘要翻譯:(我不是專業,翻譯僅供參考,有誤解歡迎告知)
1.Minimum age to use: i think opinion varies from doctor to doctor but our Sam has been using it daily (4-12x a day) since he was 3 months. he never had an issue with it and it has definitely saved his life on more than one occasion.
(最低使用年齡: 我想不同的醫生有不同的見解,但我們家山姆從三個月大開始每天使用,一天用個4到12次,使用上從來有什麼問題.這個機器肯定已經救了山姆很多次)
2.Adam started using the Cough Assist machine as young as age 2. He uses it daily for maximal insufflation/exsufflation of his lungs. It's like chest ROM to maintain flexibitly in the chest. It works by pushing air into a mouthpiece, face mask or trach adaptor into the lungs. It then sucks air out of the lungs. Simone hit the nail on the head that it is for people who have a weak cough. It works great to clear the lobes of the lungs that are missed during most suctioning.
(亞當從兩歲開始用咳嗽機,他每天使用來幫助肺得到最大的灌氣與抽氣.這就像是透過復健時肺部的擴張與回縮來維護胸腔彈性,它首先將空氣透過吹口/面罩/氣切接口推進肺部,然後再將空氣吸出來.席夢說得對,這是針對無力咳嗽的人所設計的.對於大部分抽痰無法處理的肺部深處,他的效果極佳.)
3.it is more effective at clearing mucous secretions in kids with neuromuscular disease than albuterol and chest percussions. The reason for this is that those techniques help with secretions in the very lower branches of the lungs - where our kids don't have problems (their mucociliary elevators are intact). When you get to the 12 or so upper branches is where our kiddos have the trouble - they simply cannot cough the stuff up. Because most invasive suctioning only suctions one lobe of the lungs, the cough assist is GREAT to use with kids who are trached so that you can get complete airway clearance.
(對於神經肌肉病童的痰液等分泌物清潔問題,這機器比起氣管擴張劑還有拍痰還要來得有效.原因是傳統的拍痰技巧主要是對於較深的氣管分支,但我們的孩子的黏液纖毛運動是正常的,問題不在那邊,在肺部呼吸道第12層之上更淺的分支才是他們的問題所在,因為他們無法把那邊的痰咳出來.大部分侵入式的抽痰只能抽一邊的肺,而咳嗽機對於幫助氣切的孩子保持呼吸道清潔,有非常好的效果.)
*關於是否真的深層氣管完全沒問題,呂立醫師持保留態度,他認為有些人在反覆感染或肺部塌陷的情況下,深層氣管還是有影響。
4.For many, many patients using the cough assist machine allows for sufficient airway clearance and is not associated with the RISKS that come when our kids are given oxygen. (Dr. Bach feels that giving oxygen to our kids can be very DANGEROUS and cautions against it heavily - see his explanation at his website at www.doctorbach.com)
(對於許許多多使用咳嗽機來保持呼吸道清潔的病人而言,他們可以不需要面對因為氧氣不當供應所產生的風險.巴哈博士對此有非常強烈的警告,詳情參見www.doctorbach.com)
5.Using the cough assist machine and pulse ox at home we have been able to successfully manage Adam without hospitalization during acute respiratory illness. I have seen him with low sats (in the high 80's) and after a lot of work with the cough assist machine accompanied with a belly/diaphragmatic thrust (to maximize expiratory pressure) he has cleared several mucous plugs safely and effectively at home.
(透過咳嗽機與血氧監測機,我們在急性呼吸疾病時可以自己照顧亞當,而不需要住院.我們曾在他血氧濃度最高只到80時,努力不懈地透過咳嗽機與一種推腹部/橫隔膜的技巧,在家裡安全有效地把許多痰塊清出來.)
6.a common error that most people do with the Cough Assist machine is set the pressure too LOW. The pressure must be set at least at 40 to get effective movement.
(關於咳嗽機使用的常見錯誤,就是把壓力設得太低.壓力至少要設到40才夠)
7.When Adam is VERY sick with sats in the 80's I still will do chest percussions and nebulizers. Research shows that albuterol increases cilliary movement in the lungs and it can help open airways that are irritated by mucous and infection. Dr. Bach really feels that meds and chest PT are not that necessary and that they are a waste of time, unless the child has low sats that can not be brought up by mechanical ventilation alone. The most important thing with the Cough Assist machine is to set the setting high enough to actually create enough pressure to be effective at clearing the lungs. When we first started, we were using 20/20 presure (inspiration/expiration) and it was basically useless. At a follow up appointment a YEAR later Dr. Bach told us to go to 40/40.
(當亞當病得很重,血氧只到80時,我還是會拍痰,還是會用噴霧器.研究顯示氣管擴張劑可以促進纖毛運動,也可以幫助打開被黏液(分泌物、痰)與感染刺激(而收縮)的呼吸道.巴哈醫師認為這些藥跟拍痰都不是必要的,除非孩子血氧實在太低而單靠呼吸器的幫助仍然不足,否則都只是浪費時間..關於咳嗽機,最重要的還是要將壓力設得夠高,才足夠有效清潔肺部.一開始時我們設定吸入/吐出的壓力在20/20,基本上那沒什麼用.一年後與巴哈博士的回診,他要我們調到40/40)
*這一點呂立醫師不是很同意,他還是認為拍痰與吸藥,還是有其重要性與作用。
8.We just got are cough assist machine 2 weeks ago. My son Justin was in the hospital with a mild case of Pneumonia that started with a throat infection. We all were amazed including the Respiratory therapists at the hospital when we saw how much stuff we were able to get out of Justin his first time using it. We had been doing Nebs, CPT and Suctioning but this worked so well, it reduced the amount of suctioning we had to do and he was out of the hospital 2 days earlier than his usual 7 day stays in the past.
(我們兩週前剛拿到咳嗽機,我兒子賈斯汀當時正因喉嚨感染引發的輕度肺炎而住院.當我們在醫院第一次使用咳嗽機時,對於他可以抽出那麼多的東西,我們與呼吸治療師都感到非常驚訝.我們一直都有在用噴霧氣,拍痰,抽痰,但是咳嗽機實在好用.他減少了抽痰的次數,而且以前他通常要住院7天才能出院,這次少了2天)
9.It seems that, based on the postings, a lot of you use the Vest and/or the Cough Assist, and with good results. What I am also gathering from your feedback, is that most of your kids HATE these treatments, and they seem very harsh (even though they get the job done). I also noticed that we are the only ones who have stated that we use the IPV to aggressively to clear mucous/secretions.
(從前面的文章看起來,似乎你們很多都使用Vest(震動背心)跟咳嗽機,而且效果不錯.不過我也看到你們很多人都說,你們的孩子討厭死這些東西了,這些東西好像很暴力(雖然使命必達).我也注意到了只用我們在使用IPV來積極清理痰液)
是否CoughAssist真的那麼有效?
為何台灣代理多年卻無法推廣?
這個月的試驗希望可以帶來一些答案
晴晴今天以15/15的壓力牛刀小試
還真的把一些痰引了出來
不過她真的很不喜歡 (我想她不喜歡任何在臉上的東西)
但比起抽痰 這實在好太多了
我知道有不少家屬很感興趣
因為這可能會改善不少神經肌肉病友的生活品質
所以這個月我會幫晴晴作完整的紀錄
大家可以看看效果如何
有興趣再來一起與廠商談談
另外
因為許多國外病友也很感興趣
繼上次MTM電話會議之後
近期內也打算要辦CoughAssist的電話會議
屆時我會再公佈內容與翻譯
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曾爸爸 謝謝你們的嘗試,我們會靜待佳音的到來,謝謝你們. 喆人阿媽
曾晴爸爸: 臻臻因為要每四小時抽一次痰 氣切的小朋友也可以使用嗎 使用這一台機器需要醫生指導嗎
氣切的小朋友也可用的 管子可以接到氣切轉接口 這個機器不複雜 使用上也算蠻安全的 不過畢竟所有機器都有其風險 一開始還是需要先跟醫生討論 了解對於孩子的影響 之後可以持續跟醫生討論 來調整設定 但是現在主要的問題 是國內對於這個機器熟悉的醫生很少 所以希望醫療儀器代理商可以幫忙開開研討會promote一下 這也是我先讓晴晴試試看的原因 到時候許多推動的工作 還要請大家都一起幫忙出聲
我是曾晴兒童胸槍呼吸方面的主治醫師。在國外看過大小孩使用咳嗽輔助機,在國內還沒用過。據說 高醫有醫師用的比較多,在於SMA病人身上,約十位病友,但是年紀比較大。 我想曾晴的父母親是很認真,也是很努力為曾晴找尋各個方式來幫她,跟好多父母親一樣,我也願意 讓他們去試這樣的機器,因為我希望也相信他們了解機器的危險性與風險。至於使用的長短,以及要 用多久,還要再觀察她本身的需要。 翻譯中有一些地方有誤,我的看法如下: 1. 從三歲開始每天使用:是"三個月",不是三歲 2. 亞當從兩歲開始用咳嗽機,他每天使用來幫助肺得到最大的吸氣與呼氣.這就像是個胸腔有個程式 來維護胸腔彈性一般: 吸氣與呼氣應該是"灌氣與抽氣",程式?ROM在醫學是指Range of Motion, 就像做復健的伸展與收縮,此處我的猜測是指肺部的擴張與回縮,這些動作是可以幫忙肺部保持彈性 3.深淺氣管翻譯顛倒了,他原文是說拍痰只對較低(也是較深)的氣管有效,但他的小孩是神經肌肉問 題,不是纖毛問題,所以他是較大(較淺)的氣管有痰藥咳出比較困難。至於他說抽痰只能抽一肺葉 (原文),則無法理解,不合醫學常識。 待續.........
至於開研討會的事 我有跟廠商談 他們也有興趣 所以應該會進行吧 高醫在三月會先辦一個兩天的活動 我也會去 到時候應該有機會跟他們交流一下
呂醫師, 謝謝你的指正.也謝謝你願意花時間去參加研討會,能夠有你的專業幫助,對我們來說很重要,我可以明白有時候家屬為了 自己所相信的希望太過熱心,但卻忽略了一些要注意的盲點.你的經驗很豐富,卻願意支持甚至參與這步步為營的摸索, 我們由衷感謝.因為有不少病友也在讀晴晴的網站,如果你有什麼不同的觀點請別吝嗇於讓我們知道,我希望其他人也能在 裡得到多元的醫療訊息,畢竟每個病人的情況不同,豐富多元的資訊還是比較能讓其他病友思考自己的選擇.
接續 7.翻譯部分: 幫助打開"被黏液(分泌物、痰)與感染刺激(而收縮)"的呼吸道;巴哈"醫師"認為這些 藥跟拍痰都"不是必要的",除非孩子血氧實在太低而單靠"呼吸器"的幫助仍然不足,"否則都只是浪費 時間". 這一點我個人不是很同意,我還是認為拍痰與吸藥,還是有他的重要性與作用。 對於第三點 是否真得深層氣管完全沒問題,我持保留態度,有些人在反覆感染或肺部塌陷的情況下,深層氣管還 是有影響。 其他沒意見
我已經將呂醫師的翻譯建議放上去了 也把不同於家屬的意見以藍色文字特別註明 請大家注意一下
曾晴爸爸, 請問這部機器, 適合昏迷的寶寶嗎? 因為我的寶寶出生後就昏迷, 現在三個多月, 每二個小時就要抽痰, 另請問這部機器的價格.. 爸爸及麻麻要加油喔!! 希望曾晴快樂
To bibi, 個人經驗上我覺得咳嗽輔助機的效果 是比起抽痰還要來得好 也比較沒有那麼痛苦 但這是因為曾晴的咳嗽能力不好 我不了解妳的寶寶的情況 所以很難回答妳的問題 我建議你把這邊的資料給妳的主治醫生看看 因為不少人有興趣 我覺得或許請廠商辦個說明會或研討會 如果有什麼進一步的消息再通知妳 好嗎
請問晴晴爸爸 這咳嗽輔助機與我們一般熟知的-- 不需做氣切的正壓呼吸器有不同嗎? 我一直深切期盼能夠讓magger脫離呼吸器, 但是除了她的肌肉極限的考量外, 引痰吋問題真的讓我們束手無策, 如果用咳嗽機來做訓練之用, 作為脫離呼吸器與不脫離間的另一種選項, 也許能為孩子擺脫呼吸器重獲自由這一條路多一種可能性。
To magger333, 這跟正壓呼吸器是不一樣的 這個機器純粹是用來模擬咳嗽的效果 這樣因為肌肉無力而無法把痰咳出來的病人 就可以比較輕鬆的保持呼吸道的暢通 比起侵入性的抽痰 不僅比較溫和 我們也覺得效果比較好(特別是搭配拍痰技巧) 照顧者也比較輕鬆 每一次使用的時間大概只有3-5分鐘 一天做個4次左右 所以這不是一直戴在身上的 因為我們也才用一個月 還不知道這是否有訓練/復建的效果 但是美國有一個推行非侵入性療法的醫生 搭配咳嗽機的長期使用 的確是幫助了許多先天肌肉病變(如SMA)的孩子脫離氣切 得以自己呼吸 在英國也有醫生在作同樣的事 我們的態度也跟你相同 希望盡量以訓練的方式 去讓孩子嘗試生命的潛能 我目前知道的還很有限 也覺得還有很長的路要走 但知道台灣這邊的醫生以及廠商 也開始參加咳嗽機相關的研討會 蠻感動的 相信這方面的資訊與know how 都會越來越進步 加油
謝謝晴爸的詳盡回覆 請問如果我們也想試試看, 應該去哪裡找廠商租用, 購買的話會不會很昂貴, 社會福利有沒有可能補助呢? 這台咳嗽機使用時需要加藥嗎? 你說的研討會會對外公開嗎? 還是只限於醫療專業人員? 先前我看過某位家長在刺激腦麻的孩子咳嗽, 是用針筒快速將清水推入孩子的咽喉,引起劇烈的咳嗽 不過這一招對MAGGER似乎沒用, 她乾脆將水吞進肚子, 這台咳嗽機推入的是液體或氣體? 文中一再提及的風險為何..... 唉!我真是有點等不及想試用看看。 晴情的咳嗽機是國外買回來的嗎
我的小孩看起來很正常但常生病,即時很嚴重的生病他永遠活潑亂 跳,但從2個 多月就開始生病不停至今已1歲8個月住院超過20次每次都是發燒 肺部及細支 氣管炎,每次住院睡氧氣帳吹支氣管擴張劑及拍痰40─60分鐘不 等,卻從不 咳嗽都要一天抽痰達4次之多,跟醫生提是否過敏,答案都是NO, 最近我再另外 找過敏專科看過,我向醫生說明即時平常就都有痰,每次住院穩定後 出院,在家 約一星期左右也是每天吹痰及拍痰可是最後還是因生痰食慾愈來愈差 最後積痰發 燒及喘又要住院了。過敏專科醫生檢驗我小孩的過敏指數達1200但 卻因年紀太小 驗不出過敏原,家中有空氣淨新機及除濕機和防蟎吸塵氣房間床具都 是防蟎,甚 至每天拖地,最後醫生建議我在家抽痰,可是我不想讓我的小孩面臨 每天抽痰的 處境,剛好看到咳嗽機這文章,想知到在那裡可以租用或買到或有何 家醫院有使 用的,請告訴我這身心具疲的媽媽吧! PS我從6個月就開始使用過敏益生菌至今呢!
To 樓上的辛苦媽媽 我不確定咳嗽機是不是適合你們孩子 但是對於晴晴的確是有幫助的 妳可以跟醫生討論 或者聯絡 聯杏的黃瓊娟小姐 0927985881 了解進一步的諮詢