Re: BB聽力測試

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Shiba-Inu | 2005-08-05 09:51
MarchK,

In term of 栗子's condition, I have a lot of information to share with u as that is my area of interest when I was working in HK. However, I am myself quite busy recently :wth: and I don't think it's a good idea to bomb u with too much info.... so one step at a time! :wink: Pls allow several days btw my responses!

Firstly, if further tests still indicate similar results (ie. no ABR responses, but normal cochlear functions). The Eng term for it is "Auditory Neuropathy (AN)". It's a rather new diagnosis that can be made due to improved technology. I doubt if there is any Chinese term yet, as I would say just a few professionals in HK heard of it ten years ago.

Secondly, chance of neuro-maturation is still there, although with your additional info "黃疸過高", that chance decreases.

"他一隻完全聽唔到,另一隻只聽得好少. "

It's one of the characteristic of AN that no ABR can be recorded, but it doesn't necessarily mean that baby "cannot" hear. Rather it's like what the doctor said " ....時間唔一致,所以即使他聽到聲音,都可能分辨唔到音"
Hearing has several dimensions: loud/ soft, hi-pitch/ lo-pitch, and timing of which the sound is received. The last item results in "distorted" sound (like a radio tuned wrongly), but baby may still hear it. And since ABR result was affected by the timing component, we actually have no idea how loud/ soft 栗子 can detect sound, until he/ she is big enough to do other behaviour tests.

With this in mind,

(1) talk and sing to baby as usual. Although the songs 栗子 "hears" may not be in the same way as ours, he/ she still feel your love within.

(2) face-to-face interaction is especially important in this case. Consider adding any visual cue that helps him/ her understands.

(3) as mentioned in last message, if hearing aid is fitted for trial, very close monitoring is needed. If 栗子 shows sign of discomfort/ frighten by amplified sound, that means he/ she can detect sound softer than we expect. Report to the audiologist and ask for opinion of re-tuning the h/a.

(4) sign language is not a bad idea, but talk to him/ her even u try sign language. In US, even hearing babies learn sign, because research with them shows that they can develop both just like learning 2 languages.

(5) "話耳蝸植入手術唔適合他,唔駛諗" I have conservation at this point. Successful cases have been reported in foreign countries. And I had a case in HK (an AN teen) has it done too.

(6) answering your previous question: if CI surgery is considered, HK govt will usually fund for one rather than two even though two ears are impaired.

---- All in all, hope is still everywhere and keep on the love and care u dedicated to your baby! ;-) If u don't mind reading a lot of Eng to understand the situation more, I will give u some websites next time.

---- All the best to u and your baby! BTW, is baby 栗子 a boy/ girl? :-?
MarchK | 2005-08-05 13:04
Shiba-Inu,

栗子係男仔,有對大眼睛,成日皺眉頭好似好多煩惱咁,好攪笑!得閒我先加番張相上去.

我都問過東區聽力測驗o個位陳生(BK媽咪叫他做四眼陳o個個),正如你所講,栗子診斷為Auditory Neuropathy. 可能陳生見到BB情況較差,所以都好有耐性解釋o個情況,陳生都唔係其他媽媽講得咁差.不過,解釋完都話耳科無乜好做,唔會refer去QM,一年後覆診,等下葵涌跟進.:sleep:

其實尋日心情都down down o地,所以o係公司開工時喊o左個上午,好無奈!
:cry: 一收拾心情後,又繼續找資料.所以中英文我都會睇.
tbo | 2005-08-05 14:30
我個女九個多月大，下葵涌話們佢兩邊耳都係中度弱聽，但我一直唔肯接受現實，一直認為佢會好番 …

前兩日去EMB做了耳模，佢地問我點解仲唔開始接受早期訓練同排兼容幼兒園我先識醒！我真後悔無早點看特殊教育這一頁，我希望現在不太遲。

請問我有什麼可以做？請指教。 :-(
Shiba-Inu | 2005-08-07 06:49
MarchK,

No crying la! When u feel "down down o地", come here to chat with other moms to share your feeling. I will try my best to help u too! u will get support and feel better after sharing more with others and knowing more and more on how to help 栗子!

"不過,解釋完都話耳科無乜好做,唔會refer去QM,一年後覆診,等下葵涌跟進"
Medically there is really nothing much the doctor can do for the time being. So follow-up by the audiologists and teachers in EMB is really the best. However, as I have mentioned, the possibility of having CI to help 栗子 is still there (u can read it from the articles followed), so u still want ENT doc to follow-up 栗子's case.

One thing u and your husband may consider is to learn sign language yourself first to prepare for the future. HK Society for the Deaf has introductory classes which are popular:
www.deaf.org.hk

However, your baby will not be ready to use it until after 6 months. For the time being, talk talk and talk more to him.

Since u don't mind English material, you can start with this easy one:
Info for parents with AN kids
Hearing what a AN person hears (item #2)

Let me know when u want more! ;-)
Shiba-Inu | 2005-08-07 07:09
Hi tbo,

It sometimes takes time for parents to face the fact that their babies have hearing loss. So don't blame yourself.

Since your daughter has moderate hearing loss in both ears, chances are she can still hear most part of your talking to her when she is a baby, because you are always holding and hugging her and keep her very close to you. Of course the ultimate solution is to let her wear hearing aids so that she will not miss even a small part of your talking and singing. The successful rate of using hearing aid in moderate HL kids are very high, and the chance of going to normal primary school is high too!

So start using h/a for her consistently, 接受早期訓練, follow the training at home and 排兼容幼兒園.... All these help her now and still 不太遲!! :mrgreen:
jackieckw | 2005-08-08 15:33
MarchK.
你的心情我們完全明白, 多點上來跟各位媽媽和專家們談談吧.我們會支持你和栗子的.
我的小b剛証實了輕度弱聽時,內心也很難受, 正當我消化了和接受了這事實後,健康院姑娘又說他的頸項有點歪,要做物理治療.我也以為是小問題, 但治療師說如沒有改善, 會影響肩膀和脊椎骨, 五官也會歪呢. 所以帶孩子的責任和壓力真的很大.我知道氣餒是無補於事的, 唯有樂觀面對吧!
願與各位bk moms共勉!
DaisyWong | 2005-08-13 23:23
Hi MarchK,

唔好灰心呀，栗子係一個好堅强同勇敢嘅bb，佢好努力咁嚟到呢個世界，同daddy mummy見面，所以你又點可以氣餒呢！

為栗子努力呀！我哋bk mums全力支持你 :hammer: :hammer: :hammer:
MarchK | 2005-08-15 10:48
上星期三去了教署轄下的聽覺訓練組,他的聽力同以前所講一樣咁差,但處理方法又未至於東區醫院所講咁絕望,話有些早產BB遲些會有變化,有例子會慢慢聽番,唔需要任何輔助.另外,教署會有一個"督學"(負責BB教育上o既需要o既人,類似社工)跟進BB到中五畢業,起碼有專人可以幫到手,我唔駛咁旁惶.我同老公將會上一些堂(聽覺訓練組負責),去學點訓練栗子聽同講.

依家已為栗子做了一隻耳模,三四星期後可以試帶助聽器,另一隻要自己出去私家配.聽力學家話唔否定栗子有機會可以做耳蝸手術,要繼續觀察,始終BB仲細,會有變化.J

只希望栗子可以同人溝通,智力正常,我已感欣慰!

DaisyWong, 你o既BB點呀?
katmami | 2005-08-15 17:44
各位,

好耐冇蒲頭la, 因為大仔剛開學, 好多濕碎嘢忙....另一方面, 囡囡真係令屋企生"聲"不少---佢不單止愛笑, 愛運動(成日忙於翻來翻去, 手舞足蹈), 更愛練聲(嘈到不得了, 發出嘅聲音差D可以震爆杯!攪到成日最愛摟住佢
DaisyWong | 2005-08-17 00:54
Hi MarchK,

Good news bor :-D, 前面仍有出路.

我bb上星期再去瑪麗醫院做聽力測驗，情况並未好轉，即場我就忍唔住放聲大喊 :-( ，事後諗番，其實情況無惡化，已經好值得感恩了。

你bb去完教署轄下的聽覺訓練組, 嗰度d督學好好人，有乜事可以打電話問，唔駛要吓吓等到覆診時先可以跟進。我bb而家係雙耳配戴助聽器, 佢對聲音好明顯敏感咗，但記住bb初時對戴助聽器會抗拒，但功多技術，我哋成家人已經可以幫bb戴得好純熟啦，記住bb初時戴助聽器會喊(因為我哋大人唔識點樣帮佢戴, 所以連我哋自己都會好忟憎), 同時佢又會成日用手去mon甩，尤其時天氣熱，但千祈唔好因為咁樣鬧佢，否則佢會憎咗戴助聽器(因為佢一戴助聽器 = 比daddy mummy鬧), 儘量分散佢注意力就得啦。下次督學會教你平日同bb溝通嘅技巧，每晚都要同佢玩吓至少個0鐘(儘量啦 :sleep: )

我bb可能大d都需要做耳蝸手術, 但醫生話至少都要等bb歲半大先決定，佢叫我哋現階段唔好諗太多，實際d同bb多訓練多溝通先可以幫到佢，空担心只會浪費時間.

條路唔只一人行，栗子同子喬一齊努力啦 :-D
32/40
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