朋友的囡囡有"大腦麻痺症"，有無其他小朋友一樣？ - 特殊教育 - 教育王國

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教育王國 › 討論區 › 特殊教育 › 朋友的囡囡有"大腦麻痺症"，有無其他小朋友一樣？ ...

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樓主: Li_vivi	go 朋友的囡囡有"大腦麻痺症"，有無其他小朋友一樣？ [複製鏈接]

Rank: 2


	43

641^#

發表於 08-10-19 22:49 |只看該作者

hi ndw
saw your message below to fan fan. do you mind sharing with me how your kid's seizure pattern has changed? my boy is a cp having seizure since 17 days old now 5. had IS (infantile spasm) before. i suspect he is changing the pattern again but dont know how.
hang on to it. dont give up. add oil.
myboyjon

原帖由 ndw 於 08-10-12 14:33 發表
fan fan
You are welcome. 以后如果我老公有时间继续做笔记，我又会继续寄给你。
请保重自己的身体。记得以前在大学生团契里常唱的一首歌，“莫记忧与愁，要快乐常欢畅，俗世间怨恨，你莫在鬱心上” 虽然当时是有点“少年不知 ...

Rank: 3 Rank: 3


	275

642^#

發表於 08-10-22 11:49 |只看該作者

fan fan, ndw, bell,

朗朗又入院了, 發燒39.4度, 而家係醫院檢查, 今次一定要搵出發高燒的原因, 我好擔心.....今次, 己經係今年第5次入院啦....

超級魚

原帖由 fan-fan 於 08-10-18 23:33 發表
Bell

咁醫生有冇話幾時俾阿囡出院? 不斷咁食抗生素, 個人都好散啦, 阿囡有冇摟計呀? 真係辛苦妳了!!

fan fan

Rank: 4


	873

643^#

發表於 08-10-22 15:28 |只看該作者

超级鱼，
我求主给医护人员智慧，能找出朗朗密密发高烧的成因。能连根拔起发高烧的原头。
你开始新的工作没有？
时间上安排有没有问题？

Bell
阿女点啊？要食7日抗生素的话，饮多的水啦。我想会少些副作用。

fan-fan， noemie, myboyjon and dada5
我托人在大陆帮我买了孙介光著的舌针实用学一书。你知啦，我是无经济能力带平安去做舌针，唯有看看书学学表皮。尽量帮平安啰。我老公又买了Glenn Doman 的一本帮助恼伤的书自己看。取取经验而已。

大家一起努力啦。
ndw

Rank: 4


	873

644^#

發表於 08-10-22 16:03 |只看該作者

Hi myboyjon

Hi myboyjon
I will try my best to share with you how my kid's seizure pattern has changed accuritly. My husband is able to spend full time with our daughter. She 流口水a lot, that is one pattern. Then an other pattern, her eyes doing a few seconds of flipping, or slightly shaking left and right just for a few seconds. The other pattern is her fingers will cure like 鹰爪. After we change the medication amount and frequency of feeding, the seizure pattern is gone for a period of time. Then, other patterns start show up. Or we are did not notice them before. I don't know which one is the case. Like a sudden heat flush to her cheek. Some times only affect one side of her cheek. I can see her heated cheek turn to red like red apple. She keep crying, head flip back with upper body and hip moving like a fish. With the seizure medication, all her seizure pattern are suddle. Some times, the seizure is even more quiet. Such as her upper and lower teeth keep hitting each other when she is not chewing, arms become stif just for a short time.
总之花款多样。讲之不尽。想到在报道。
If your boy is 5 years old now, he can have more choices for seizure medications. Because more tested seizure medications for age 3 and older. My daughter is not 3 yet, so she only have 2 choice for medication. The one she is taking now come with a lot less 副作用。
The note my husband is taking is not about my daughter's seizure pattern. It is about a Seizures and Epilepsy in Childhood book. That will give us more knowledge about children seizures and better help for our children. So we may reconigzes any seizure patern our childern has.
If you want the note, let me know. I may pm you too.

ndw.

Rank: 4


	873

645^#

發表於 08-10-22 16:09 |只看該作者

after my husband read Gleen Domain's book, he agree with some of Domain's idea, but disagree with some. So, we are not going to spend more money on the Domain course. We design our won training program for our daughter. Take some idea form Domain and some from others like "Net Beneil" (misspell it for sure) method and 舌针. Or any pressure point stimilation method. Bottom line is if we can afford, we don't want to send her away to school.

[ 本帖最後由 ndw 於 08-10-22 16:11 編輯 ]

Rank: 2


	43

646^#

發表於 08-10-23 13:41 |只看該作者

Hi ndw

Thanks a lot. could you pm me the note please?.

ding kiu
myboyjon

原帖由 ndw 於 08-10-22 16:03 發表
Hi myboyjon
I will try my best to share with you how my kid's seizure pattern has changed accuritly. My husband is able to spend full time with our daughter. She 流口水a lot, that is one pattern. The ...

Rank: 2


	43

647^#

發表於 08-10-23 14:02 |只看該作者

i noticed that someone has uploaded the doman training video on youtube, it help understand what Glenn Doman says in his book.

原帖由 ndw 於 08-10-22 16:09 發表
after my husband read Gleen Domain's book, he agree with some of Domain's idea, but disagree with some. So, we are not going to spend more money on the Domain course. We design our won training progra ...

Rank: 5 Rank: 5


	2077

648^#

發表於 08-10-23 14:23 |只看該作者

超級魚:

朗朗怎樣? 是否已開始寄宿? 會否寄宿那裡容易感染?
不過珈珈上2個星期也發燒入院, 不知是否新校不太適應. 因連續2個月都發燒入院.

祝朗朗早日康復, 快快樂樂上學去.

Rank: 3 Rank: 3


	212

649^#

發表於 08-10-23 22:42 |只看該作者

超級魚

朗朗退燒未? 醫生有咩comment?
擔心總會有, 不過都要保重自己呀!!

我阿b明天都入院做吞嚥測試, 我都好緊張...

我每晚都會為妳及朗朗祈禱!!

take care!!

fan fan

原帖由 超級魚 於 08-10-22 11:49 發表
fan fan, ndw, bell,

朗朗又入院了, 發燒39.4度, 而家係醫院檢查, 今次一定要搵出發高燒的原因, 我好擔心.....今次, 己經係今年第5次入院啦....

超級魚

...

Rank: 3 Rank: 3


	275

650^#

發表於 08-10-24 09:25 |只看該作者

Mandy, Fan Fan, Ndw,

朗朗已退燒了, 醫生今日會再抽血, 觀察為何朗朗這3個月經常發燒, 且燒到40度, 我的心情又起又跌, 原本朗朗將於11月入寄宿位, 但現在可能要延期, 無所謂啦, 最緊要朗朗身體健康, 平安。

我面部的第7條神經線發炎, 左邊面好痛, 睇佐幾次醫生都唔好, 我好擔心.....妹妹又感冒, 我又病, 朗朗又入院....正如老夫子話齋.......禍不單行.....呢.......

不過, 有你地的支持, 心好甜.....fan fan, 不要怕, 只要上帝與你同在, 無乜野可以令到我地驚, 越早知bb的吞嚥情況, 可以越早對症下藥, 積極d林, 對佢同對你都舒服d....你訓唔訓到覺, 身體好d未?加油, 空中禱告與你相遇....

Mandy,
珈珈返學開唔開心?朗朗9月至10月只返佐3、4日學, 每次放學都累得好緊要, 因為以前係sccc可以訓晏覺, 但係而家係學校就無得訓, 仲要上堂, 所以佢唔係好適應.....又成日病呢, 都唔知點返學.....

ndw,
囡囡有無抽根?身體如何?細b好嗎?

超級魚

原帖由 fan-fan 於 08-10-23 22:42 發表
超級魚

朗朗退燒未? 醫生有咩comment?
擔心總會有, 不過都要保重自己呀!!

我阿b明天都入院做吞嚥測試, 我都好緊張...

我每晚都會為妳及朗朗祈禱!!

take care!!

fan fan

...

[ 本帖最後由超級魚於 08-10-24 09:28 編輯 ]

Rank: 4


	687

651^#

發表於 08-10-24 12:03 |只看該作者

亞女尋日終於出左院喇~~~ 最終就係話亞女肺炎 + 尿道炎 ..... 肺炎又係果句啦 --- 話亞女可能食野時吞左入個肺到 , 所以成日都會有低燒 + 體重磅數唔好 , 又係重覆建議亞女開胃喉 ..... 至於點解兩個月內重覆有兩次尿道炎重係同一種細菌 ..... 下次要返醫院 check 腎 , 要做3次 test , 話怕亞女本身係 CP , 會影響佢腎肌肉活動得唔好喎!!!唉~~~ 亞女頸后個粒野排左2009年1月可以做 MRI , 不過我問左醫生 , 如果亞女頸后係乜野都要開刀切除 , 除非係肥膏唔駛之外~~ E+一齊都要做哂D TEST 先知發生咩事~~~ 我尋日聽左醫生講亞女要做一連串既野 , 我個腦忽然空白亞片 , 可能加上我無食早餐 , 見有D暈~

亞女今次身體唔舒服 , 反而無摟計 , 不過個人比較累 , 唔想食 , 想訓~~~ 又係令人擔心~~~ 亞女食抗生素食到肚痾 + 痾到 PAT PAT 損左 ......

我知道朗朗又入左4C 病房 , 唸住過去睇佢 , 不過怕自己唐突 , 最后都無去到 , 希望朗朗都可以快D出院啦~~~

FAN FAN 你的小朋友做果個吞嚥 TEST 唔難做唔駛擔心 , 可能你小朋友只你需要加凝固樂就OK呢????

NDW --- 多謝你關心 €^^" 希望平安身體健康啦~

Rank: 3 Rank: 3


	275

652^#

發表於 08-10-24 12:15 |只看該作者

bell,

多謝你, 如果想探朗朗, 當然歡迎, 不要怕, 朗朗可以認識多d朋友係佢o既福氣。朗朗而家都好精神, 希望快d可以出院。

超級魚

原帖由 BELLFOK0318 於 08-10-24 12:03 發表
亞女尋日終於出左院喇~~~ 最終就係話亞女肺炎 + 尿道炎 ..... 肺炎又係果句啦 --- 話亞女可能食野時吞左入個肺到 , 所以成日都會有低燒 + 體重磅數唔好 , 又係重覆建議亞女開胃喉 ..... 至於點解兩個月內重覆有兩次 ...

Rank: 2


	43

653^#

發表於 08-10-24 14:14 |只看該作者

Bell

Can your girl crawl / walk? Her condition is quite similar to my friend's daughter. Her doctor asked her to 開胃喉 several times but the mother refused b'cos her girl ability to eat/chew/swallow will be deteriorated.

she also has 低燒 + 肺炎 + 尿道炎, doctor cannot tell reason. Her private PT asks the girl to sit on chair, legs down (not on bed) (she cannot stand) more and another PT suggested her to do crawling training (Doman training).

myboyjon

原帖由 BELLFOK0318 於 08-10-24 12:03 發表
亞女尋日終於出左院喇~~~ 最終就係話亞女肺炎 + 尿道炎 ..... 肺炎又係果句啦 --- 話亞女可能食野時吞左入個肺到 , 所以成日都會有低燒 + 體重磅數唔好 , 又係重覆建議亞女 ..... 至於點解兩個月內重覆有兩次 ...

Rank: 4


	873

654^#

發表於 08-10-24 16:20 |只看該作者

myboyjon
I have forwarded you the same note I sent to fan-fan in 2 pms. It is too long so I better saperate it into 2. It is incomplete because my husband has not finish reading the whole book yet.

Thank you for telling me about some one posts the doman training video on youtube. I think I had seen it if it is post under Doman's crawling track and neck support.

My husband and I have home made one crawling track according to what the forum suggested.

With our altered version. We did not need to buy anything new. Just use what we have in home currently. Put a gym excersice mat on top on a wide bed board. lift one end up.

It works.

When we put our daughter on the crawling track, she did not even raise her head up at all.

She has no motivation at all but just keep crying. My husband read the Doman book and understand that unless the child's head is up when practicing on the crawling track, it does not good.

So, our present step is try to get our daughter to raise her head up, at least chean up. Then, we can put her back on the crawling track. I don't know when thought. My husband is reading every word the book said.

She love chocolate cake. We even think about puting the chocolate cake line up on the crawling track to get her head up and craw.

We will see.

Rank: 4


	873

655^#

發表於 08-10-24 16:27 |只看該作者

sorry, i can not always write Chinese

my work computer frozed on me one day. The replaced one does not come with the full set of language pack. I can not install the Asia charactors by using the normal way like program > setting.... I forget how I get the first one work and I lose the note on that too.
I need to use my husband's computer to write Chinese.

Rank: 2


	43

656^#

發表於 08-10-24 22:09 |只看該作者

ndw
thank you and your husband for the notes.  i will spend sometime to read it (it is looooong). which book is it? for the video, i just typed doman and many come out. there are sensory integrated therapy as well.
you made your own crawling track??!  i was thinking of using the slide on playground as my home is small.  my son can crawl actually but the way he crawls is a bit strange.
he is crazy about chocolate too (me too).  good motivation. many evenings of pt exercise in tears, chocolate was his only comfort, hahahaha...but we gave only a tiny bit each time b'cos it made him very excited which we are afriad is not very good for his seizure.
i have no chinese pen too. i need to copy paste some words.
myboyjon

原帖由 ndw 於 08-10-24 16:20 發表
myboyjon
I have forwarded you the same note I sent to fan-fan in 2 pms. It is too long so I better saperate it into 2. It is incomplete because my husband has not finish reading the whole book yet.

...

Rank: 3 Rank: 3


	212

657^#

發表於 08-10-25 01:22 |只看該作者

各位

阿ｂ個吞嚥test, 結果麻麻地, 飲水照到有d落左肺, 依家要等下星期一見醫生先知點做...

阿b做完test返病房後, 我同個工人頂撞左兩句, 我又失控喇....其實我明白佢好錫阿b, 當佢知道阿b個test result唔好, ST話依家最低限度都要飲水/飲奶落thickener頂住先, 佢就嘈嘈閉, 又話唔好, 又話阿b唔肯食, 又呢, 又路, 講到我係一個壞人咁, 要阿b受苦, 跟住我就狂喊.....
我諗我老公當時見到我都覺得好煩, 佢坐埋一邊, 由得我喊喊喊, tissue都冇俾張我....

今晚返到屋企大家都好似冇咩事喇, 不過先頭我老公彈左一句: "我諗我地好快就全家攬住一齊自殺架喇, 因為大家都承受唔到壓力", 跟住我又發顛喇....
我話:"你係咪咁講野呀, 你係我精神支柱, 你咁講我真係想死架...", 佢跟住話:"你精神支柱係基督, 唔係我", 跟住我個人好似空白晒, just係度狂喊, 佢見到我咁, 即刻閃上床訓覺.....真係吹脹!!

可能今日喊得激動得滯, 依家個頭痛到爆, 其實我依家平伏左好多, 我知道我老公都好大壓力....

超級魚, 呢排d睡眠質數都係麻麻, 有時半夜點幾兩點先至訓到, 四點半又醒, 成六點先訓返, 7點又返工, 希望慢慢有改善, 仲有你成日安慰我, 為我打氣, 不過你都不要忘記為自己打氣呀, 神經線發炎好多時都係源自壓力, 我近排又係好奇怪, 差不多日日都突然成身起風疹, 全身痕到不得了, 要即刻食止痕抗敏藥, 1-2hrs之後就完全冇事....
我依家都係痕住咁打字架...heheee

fan fan

(可能佢

原帖由 超級魚 於 08-10-24 09:25 發表
Mandy, Fan Fan, Ndw,

朗朗已退燒了, 醫生今日會再抽血, 觀察為何朗朗這3個月經常發燒, 且燒到40度, 我的心情又起又跌, 原本朗朗將於11月入寄宿位, 但現在可能要延期, 無所謂啦, 最緊要朗朗身體健康, 平安。

我面 ...

Rank: 4


	687

658^#

發表於 08-10-25 10:33 |只看該作者

FAN FAN,

我之前都好似你甘壓力, 攪到全身起哂風癩 , 痕到不得了 , 個人忟到不得了 , 又訓唔好~~ 睇西醫即時打針就好快退 , 點知食完兩日藥又會起返 , 重重覆覆甘去睇醫生 , 睇左幾個西醫又睇埋中醫 , 最後睇左一個係佐敦既西醫食左一個星期藥好返 , 佢話可能你為左亞女甘樣壓力大都會起風癩.......

你同你老公E+情緒唔好甘好 , 先會甘講D甘既野 , 我同我先生好耐之前都係為左亞女既事都有甘講過 ~~~ 不過過后大家傾下就無事 ..... 此時此刻最緊要大家互相扶持 , 可能你老公返工壓力大 , 因為一場金融海嘯間間公司都會 CUT 人... 又加上你&你們小朋友問題 , 令到佢喘不過氣來 ....

點都好大家互相體諒下大家啦~~~]

至於你工人問題 , 就同佢講只係暫時性 , 等見埋醫生先 , 亞B唔食 , 就慢慢呵下佢食 .....

超級魚 :

你都係壓力大先會攪甘耐醫唔好 , 你唸下 : 係唔係最近朗朗成日唔舒服 --- 發燒等等 ... 先會令到你身心疲倦 ... 放鬆下自己心情 , 用平常心啦~~~ 你過份擔心都無用 , 盡左自己力就OK , 因你家中仲有你亞媽 + 亞女仲要等你照顧~~~ 你知道嗎????

最近亞女既事都令到我她煩 , 她唔開心 , 於是我去左搭巴士沿途中 , 我一個人靜靜地唸返亞女既事 , 當佢要接受某D野檢查 , 或者必須要甘做都無辦法要自己接受 , 有時唸連自己接受唔到 , 甘亞女可以點呀~~

Rank: 4


	873

659^#

發表於 08-10-26 07:43 |只看該作者

fan-fan,
我可见到你和你老公都十分爱啊b。你们两夫妻其实也很互相扶持。工人也很爱啊b。阿b有3位亲亲的陪同做吞嚥test和支持鼓励，很是幸福。
fan-fan, 请你喊完过后，还要刚强壮胆啊，逐步逐步行la. 唔好为未发生的事去担忧。把握此时此刻可以享受的就专心享受。例如有时间躺在床上睡觉时，就好好珍惜睡觉的机会。学你老公la ....閃上床訓覺.....

我觉得几好，反正他又无能力帮，我想他自己都承受唔到他自己的壓力。在医院里，佢坐埋一邊, 由得你喊喊喊.... 这是他同你唔同的面对壓力的反应。所以才顾唔到俾tissue你。正如你老公所说的：“.....因為大家都承受唔到壓力"。他都话到好似想死lor. 他这话我看出的是，你老公的壓力和感受同你承受的是一样的。他同你是坐在同一条船的。只是各有不同的反应。又正因为连他自己都需要以基督为他的精神支柱，又点可以成为你的精神支柱呢。所以你老公才说:"你精神支柱係基督, 唔係我"。他说的却是真。只要你老公无同你一齐同时痛哭已很好了。起码有你老公可以明天有精神，和冷静的心去面对明天的事。

当我失控0甘喊喊喊.... ，见到我老公可以訓到覺时，我会有安慰，因为想到起码有一人可以养足精神打明天的仗。办好明天要办的事。
无论怎样，千其唔好让自己有对老公不满的思绪。一意识到有就要立时斩断它。你继落来的生命旅途都靠这亲密战友和你并肩作战的。

我和我老公都各自在不同时间喊过。当然是我喊的多la.始终我有女人的亥尔蒙嘛。:cry: 男人好怕面对人喊的。有一朝，我老公话我知，他听到一圣歌，想到女儿平安，就禁不住要跑道门外喊。这样不会影响到屋里的小孩子和正在睡觉的我。

我觉得我们每一个作c.p. 孩子的父母，没有一个会觉得无压力的，无难当的事的。我同我老公都有为平安的事而有冲气的对话。能学到及早收口就好。大家坐在同一条船的，有情绪激动时，若反应会增加对方的压力，就如自己在摇条船。我话俾自己听，我唔可以痴线，也唔可以增加老公的压力，烦到老公，搞到老公痴线。如果不是，剩下来的那个无痴线的付担加倍的重。我有次烦到我老公想死，但我老公想到如果他不在，我根本唔可以照顾到3个女。他又去唔到神个到，他的永生唔值得0甘放弃啊。所以无做傻事。

fan-fan, 我为你们一家祷告。
你啊b的情况绝对不是你或你老公的错，也绝不是你们道至的。你们都是好父母。
ndw

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發表於 08-10-26 08:25 |只看該作者

myboyjon,
The book name is Seizures and Epilepsy in Childhood by John M. Freeman, M.D.
Eileen P.G. Vining, M.D.
Diana J. Pillas

Before we have our home made crawling track, I have thought about using a slide too. :idea:

We also realize that whenever we give our daughter sweet food even fruit, she get excited, and hipper. So, we are very stingy on feeding her sweet food.

  over excited would cause emotional seizure too.

I think as long as your son can crawl even at his own unique way, this is very good.  keep pratice.  I think he will get better.
I could not see my daughter even moving her body to try to crawl.  We need to get her motivation going.  The hard part is that we have the seizure to concern about. When she cry too much, she might have seizure and the next few days she will be very tired.  That is the part that my husband does not agree with Doman at this point of his knowledge.  So, we take it very easy on her.

What can I do. I don't want to debate with him to increase his stress as he is the full time care giver to our daughter.
ndw

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