教育王國

標題: 患有發展遲緩和癲癇的囝囝, 只喜歡自己玩, 令我感到很孤獨 [打印本頁]

作者: chlohong 時間: 11-4-24 22:16 標題: 患有發展遲緩和癲癇的囝囝, 只喜歡自己玩, 令我感到很孤獨

患有發展遲緩和癲癇的囝囝, 只喜歡自己玩, 令我感到很孤獨...

作者: pocoyo123 時間: 11-4-24 23:54

小朋友遲緩幾多, 現在幾大, 癲癇情況嚴重嗎? 或者有媽咪有經驗可以試下幫忙.

原帖由 chlohong 於 11-4-24 22:16 發表
患有發展遲緩和癲癇的囝囝, 只喜歡自己玩, 令我感到很孤獨...

作者: chlohong 時間: 11-4-25 17:46

我仔1歲9個月大, 只有6個月BB能力, 現在每日食3種癲癇藥, 但仍未能完全控制抽筋...

作者: annaanna 時間: 11-4-25 17:58

你感覺孤獨？唔係應該擔心下個仔O既病情咩？搵醫生幫手，轉下藥，試下藥，盡快控制個病情仲好啦

原帖由 chlohong 於 11-4-25 17:46 發表
我仔1歲9個月大, 只有6個月BB能力, 現在每日食3種癲癇藥, 但仍未能完全控制抽筋...

作者: chlohong 時間: 11-4-25 18:27

補充: 佢未識由睡轉坐, 有係威院做物理治療, 大約每個月2次

annaanna
我當然擔心下個仔O既病情, 亦有帶佢睇醫生, 佢係威院睇腦科, 但醫生已表明現有的藥品只可控制抽筋, 不能醫治/改善病情...
另外, 我仔亦有睇脊醫和中醫, 希望有改善.

感覺孤獨是因為佢不理睬我, 佢只對塑膠和紙有興趣...

作者: pocoyo123 時間: 11-4-25 22:17

好明白你的心情, 但不要氣餒, 希望在明天
如小朋友只對紙& 塑膠有興趣, 試下用紙做一個面具, 同佢玩下, 令佢注視你時, 再試用面部表情去同佢玩, 開始係反應唔好, 但比些時間, 慢慢試

原帖由 chlohong 於 11-4-25 18:27 發表
補充: 佢未識由睡轉坐, 有係威院做物理治療, 大約每個月2次

annaanna
我當然擔心下個仔O既病情, 亦有帶佢睇醫生, 佢係威院睇腦科, 但醫生已表明現有的藥品只可控制抽筋, 不能醫治/改善病情...
另外, 我仔亦有睇 ...

作者: annaanna 時間: 11-4-26 10:42

冇錯，藥物只可以控制抽筋，不過你話仲未控制到嘛，所以要醫生繼續試藥囉，除左藥之外，你可以問下醫生，做pet scan，睇下係邊款抽筋，可唔可以做手術。

你睇政府醫生，如果你自己冇要求，佢地就會按本子辦事，你上網搵多d 資料，覆診時問醫生，仲有，如果覆診睇醫生你覺得佢ok，試下問下可唔可以每次覆診都睇番佢，一個醫生follow你o既case，好過次次覆診問同樣問題，多數醫生只會睇番上次o既藥，照開，唔會理你﹗

記低晒抽筋o既次數、時間等，覆診時同醫生講，大家都好做d 啦﹗

加油﹗

原帖由 chlohong 於 11-4-25 18:27 發表
補充: 佢未識由睡轉坐, 有係威院做物理治療, 大約每個月2次

annaanna
我當然擔心下個仔O既病情, 亦有帶佢睇醫生, 佢係威院睇腦科, 但醫生已表明現有的藥品只可控制抽筋, 不能醫治/改善病情...
另外, 我仔亦有睇 ...

作者: Pigloma 時間: 11-5-3 23:27

chlohong, 我個仔同你個仔情況一樣, 不過你仔仔都好o丫, 起碼對塑膠和紙有興趣, 我個仔好似對咩都冇咩興趣咁, 淨係會拍下手仔, 望下人咁... 一齊努力啊, 希望我o地bb都快d好返, 加油~~~

作者: chlohong 時間: 11-5-4 21:12

Pigloma,
你個仔幾大呀? 佢遲幾多呀?
其實你仔仔情況比我仔好, 佢識拍下手仔, 望下人, 呢2樣我仔都唔識....

點都好啦, 大家加油
chlohong

作者: Pigloma 時間: 11-5-4 21:43

chlohong, 我bb而家兩歲大, 早排去做評估時話佢只得一個月... 我個仔又係西藥都控制唔到抽筋, 最癲o既時候一日食成五隻藥, 但係都控制唔到... 所以我而家對西藥冇晒信心, 唔想再比佢食啦, 太多副作用啦又冇幫助喎!! 而家佢食緊一隻, 真係想快d連呢隻都唔食呀!! 唉, 好無奈, 都唔知點好, 試過好多另類治療都冇用... 唯有希望有神蹟出現啦... 求神醫治我o地bb啊, god bless~~~

作者: Bigheadha 時間: 11-5-4 22:39

請問chlohong and pigloma 介唔介意分享你地囝囝點解出生後出現發展遲緩？
quote]原帖由 chlohong 於 11-4-24 22:16 發表

患有發展遲緩和癲癇的囝囝, 只喜歡自己玩, 令我感到很孤獨... [/quote]

作者: chlohong 時間: 11-5-5 22:37

Pigloma,
我仔每日都要食3種抽筋藥 ...
只有一個月能力? 你仔仔有冇做腦電圖或磁力共振? 你試下問醫生可唔可以做, 可能找到病因? 我仔已做了腦電圖和磁力共振, 但找到病因? 現在醫生建議我仔抽脊髓液檢查, 我仍在考慮中 ...
大家努力, 希望有奇蹟.

Bigheadha,
我都唔知點解仔仔出生後會出現發展遲緩, 只係到健康院打針和檢查時發現仔仔的能力比一般BB慢

作者: tszzzzz 時間: 11-5-5 22:52

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作者: Pigloma 時間: 11-5-5 23:20

chlohong, bb其實可以做o既檢查都同佢做過晒, 連有個連醫院姑娘只係聽過而未見過有小朋友做o既檢查都做過啦, 結果係咩都check唔到, 原因不明!, 醫生話係一種好罕見o既遺傳病, 但checko個隻病o既基因又話check唔到... 但醫生又話雖然check唔到o野但又唔代表唔係... 所以, 跟本bb係咩事都唔知... 好無奈... bb兩個月大發現有抽筋, 六個月大前bb一直跟到個發展, 但佢人仔細細已入過三次醫院, 一入就抽腦脊液(最近帶bb睇中醫, 中醫知道bb抽過咁多次腦脊液, 比佢鬧到飛起, 話原來抽腦脊液係好傷的...所以冇咩唔好比佢亂抽腦脊液呀!! 西醫實話冇問題o架!!), 到佢去健康院打六個月針, 點知之後發燒抽筋, 跟住就入院, 今次一入院, 就一直控制唔到, 住o左好耐醫院, 醫生只有試呢隻藥試o個隻藥, 最"痴"線時醫生比bb一日食成5隻藥(我而家覺得佢o地勁無良!!), 其中有一隻藥食到bb本身識o既o野都變o左唔識... o個時我先知道d西藥真係好多副作用! 講真, 如果食o左bb唔抽o既都冇辦法, 點都要比佢食啦, 但眼見佢跟本食住咁多藥但係都控制唔到, 所以我o地決定唔比bb食啦... 慢慢減... 而家bb食緊一隻, 亦曾經試過好多另類方法, 希望可以唔食西藥而有其他方法幫到佢啦~~ 大家努力呀!!

[ 本帖最後由 Pigloma 於 11-5-5 23:25 編輯 ]

作者: Bigheadha 時間: 11-5-7 13:59

唔該晒，如果食藥可以令小朋友小啲痛苦，是否都不應介懷佢識幾多嘢，唔好意思，我路過呢個topic覺得你地好偉大，想同你地打打氣。凡事上天已主宰，努力面前，加油啊！

原帖由 chlohong 於 11-5-5 22:37 發表
Pigloma,
我仔每日都要食3種抽筋藥 ...
只有一個月能力? 你仔仔有冇做腦電圖或磁力共振? 你試下問醫生可唔可以做, 可能找到病因? 我仔已做了腦電圖和磁力共振, 但找到病因? 現在醫生建議我仔抽脊髓液檢查, 我仍在考 ...

作者: owl_2046 時間: 11-5-7 22:06

我以前都好似你地一樣, 有仔=冇仔佢完全唔須要我, 對我冇咩感情, 我亦覺得好冇意思.
只要得到適當訓練, 再加上你地唔好放棄,灰心, 個仔一日一日大, 進步一定會有, 你對你仔既付出佢係全部收到, 只係佢暫時唔知點樣同你溝通及表達.
希望在明天!
ADD OIL!

作者: chlohong 時間: 11-5-7 22:30

多謝大家的意見和打氣, 我會努力

作者: ioi624 時間: 11-5-19 01:41

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作者: chlohong 時間: 11-5-19 19:43

我仔只有~6個月大BB的能力, 可以參加嗎? 大約幾錢?

作者: tszzzzz 時間: 11-5-19 23:21

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作者: chlohong 時間: 12-1-19 23:05

囝囝已29月大, 仍然只有6個月大bb的能力, 仍然不理人... 越來越覺得佢係A仔

作者: methy 時間: 12-1-20 16:18

回復 chlohong 的帖子

發展慢，控制肌肉既能力都影響表達，咁細個應該未咁快知係咪A ?

作者: LPYdad1 時間: 12-1-21 01:17

本帖最後由 LPYdad1 於 12-1-23 22:39 編輯

Dear Cholohong,

My knowledge to epilepsy is very limited, so could not make much meaning suggestion.
However, one thing I could suggest
If yr kid is only interested in playing scotch tapes and paper, why not play with him over these things.
Pocoyo123’s idea of making a paper mask is great but might be too advanced.
If there is no other possible way to divert his attention to scotch tapes and paper, just play with him, even not together. Toys have no grade and u should have no worry about variety. Obsession is another thing, but talked later, but yr involvment is actually making some alternation.
No matter he is delayed, autistic or retarded, play with what he wants. Yr key issue to play is communication, not just alone, right? In the beginning, if he don’t want u to join, just play in front of him as u like with yr own words or compliments if possible. Making funny scotch tape as what u want and make whatever u like and not worrying too much about his interest, just suit his level. Make the environment cheerful not only to him but also to yrself. Try to create yr own thought from scotch tape and paper and describe to him, play it in front of him. Also, complimenting what he did through scotch tape or paper, no matter how ridiculous it is. Somehow playing scotch tape and paper are economical I guess. It's not a bad idea.
I remember when my son started to play with unknown kids in playground. He is not starting with words. He is starting with same interest…A person wants to play with another one becoz they have same interest, right? And don’t worry about how silly the game it is or what goals u need to achieve. Every kid’s goal to play is only one thing – Fun.
If the wall is lessened, perhaps u might try to play with him together over those tape and paper. This is already the beginning of a communication.

歡迎光臨教育王國 (/)