Re: Question regarding hearing loss

[Guest guest]

Hey Anne,

We ourselves just found too has hearing loss in his ears, the right ear is worse than the left. I will be watching post to hear what others have to say.

Missy mom to jeremy with MNGIE

www.caringbridge.org/co/jeremy

[Guest guest]

It sounds like your son may have auditory neuropathy,like my son, if it's

nerve conduction, however, it's unusual to have it in only 1 ear. My son

went from normal hearing in both ears to functionally deaf in both ears

by the time he was 3 years old. He is now 7 and has a cochlear implant...kids

with this kind of loss do well with implants, and my son is no exception.

He virtually had no language until he got his implant.

I'm glad they did the ABR...sometimes it's the only test that will show

a hearing problem. Just keep an eye on it...it may not get worse. Just

keep stimulating language and hearing and time will tell what happens.

>-- Original Message --

>To: Mito

>From: AReckling@...

>Date: Wed, 11 Aug 2004 19:19:57 -0400

>Subject: Question regarding hearing loss

>Reply-To: Mito

>

>

>

>

>

>

>Hi All,

>

>Asher just had his audiology appointment today and I was surprised to learn

>that he has a mild hearing loss in his right ear. They did the Auditory

Brain...(Can't

>remember?!) Test with the electrodes and one other test and confirmed that

>he has the loss and that it's origin is consistent with nerve conduction

>problems seen in mitochondrial disease. I'm shocked as I often slip into

>denial with this disease and then am rudely reminded of its presence. Thank

>God it's a mild hearing loss at this point. They say, if it doesn't progress,

>he will be fine in one on one conversations but have trouble hearing when

>there's much background noise.

>

>Anybody know what the liklihood of it progressing? Anybody know how to

stop

>it from progressing? Anyone else experience this? Are there particular

components

>of the mito cocktail that need to be included when there's this kind of

nerve

>damage? (he takes B1, B2, COQ10, and carnitor).

>

>Thanks,

>Anne R (mom to Asher - complex III defect, and possible complex I defect)

>

>

>

>

>Please contact mito-owner with any problems or questions.

>

>

>

>

>

>

>

>

>Yahoo! Groups

Sponsor

>

>

>

ADVERTISEMENThttp://us.ard.yahoo.com/SIG=12ca42lo6/M=298184.5285298.6392945.3001176/D=g\

rphealth/S=1705061498:HM/EXP=1092352853/A=2164330/R=0/SIG=11eamf8g4/*http://www.\

netflix.com/Default?mqso=60183350 "

alt= " " >http://us.a1.yimg.com/us.yimg.com/a/ne/netflix/yhoo0504_testa_300250a052604\

..gif "

alt= " click here " width= " 300 " height= " 250 " border= " 0 " >

>

>http://us.adserver.yahoo.com/l?M=298184.5285298.6392945.3001176/D=grphealth\

/S=:HM/A=2164330/rand=653678119 " >

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

I was diagnosed with mild nerve conduction hearing loss when i was

16 (they told me for years they had no idea why - my loss is in the

lower sound range). Just as the audiologist told you, I have no

problem talking one on one, or on the phone, or watching movies

etc... however if there is any background noise i have alot of

trouble...

a suggestion, is (Im not sure how old Asher is, but the sooner you

start the better) encourage him to watch your lips as you talk, even

if he can hear you fine right now... It took me several years, and

i didnt do it conciously, but I'm relatively good at reading lips

now in noisy situations... its a VERY helpful skill!

You could probably ask a speech pathologist/therapist for assistance

on ways to go about teaching him the skill... im sure there are

methods for teaching younger kids.. I just taught myself, and it was

difficult at 16, but ive been told if you start young, it can be

alot easier to pick up!

I do have a hearing aid, however due to financial constraints, i

couldnt get a very high end one, so the one i do have tends to make

EVERYTHIN louder, so it doesnt help me filter out background

noises... its helpful in situations like lecture halls or movie

theaters if i am having trouble hearing, but that doesnt happen too

often.

One encouragement, after I got diagnosed, it never did progress...

it has stayed very steady at the level it was when i was 16 (im 22

now).

sorry to hear about it all, but it sounds like it may not be too

bad! I hope it doesnt progress at all!!

Keely

> Hi All,

>

> Asher just had his audiology appointment today and I was surprised

to learn that he has a mild hearing loss in his right ear. They did

the Auditory Brain...(Can't remember?!) Test with the electrodes and

one other test and confirmed that he has the loss and that it's

origin is consistent with nerve conduction problems seen in

mitochondrial disease. I'm shocked as I often slip into denial with

this disease and then am rudely reminded of its presence. Thank God

it's a mild hearing loss at this point. They say, if it doesn't

progress, he will be fine in one on one conversations but have

trouble hearing when there's much background noise.

>

> Anybody know what the liklihood of it progressing? Anybody know

how to stop it from progressing? Anyone else experience this? Are

there particular components of the mito cocktail that need to be

included when there's this kind of nerve damage? (he takes B1, B2,

COQ10, and carnitor).

>

> Thanks,

> Anne R (mom to Asher - complex III defect, and possible complex I

defect)

[Guest guest]

Thanks ,

Why is it rare for auditory neuropathy to be only one sided? Could it be that it

is starting in his right ear and progressing to his left ear.... or would it be

likely to be more problems with the brain rather than the auditory nerve. As you

can see I'm a novice at hearing impairment issues.

I have calmed down since yesterday - it's amazing what people can cope with when

we have to. I remember thinking before Asher got his g-tube, that I could never

ever stand him to have one, and, later, I was so thankful for the g-tube and

felt that, well, we could handle that forever as long as nothing else came

along. Now I'm beginning to say well, we can deal with a hearing impairment

(mild now) and, even deal with its progression if we have too. I'm glad your son

can speak now and that the implants have helped him.

Thanks,

Anne R

[Guest guest]

I don't know why auditory neuropathy is unusual in one ear, but it is usually

in both. Your son may not have AN, but nerve conduction brings to mind

this type of loss. Do you know if the OAEs were normal? Auditory Neuropathy

usually presents as normal OAEs with absent or abnormal auditory brainstem

response.

There is an auditory neuropathy listserve you may want to join just to ask

questions, if you think this may be what your son has.

Take care,

>-- Original Message --

>To: Mito

>From: AReckling@...

>Date: Thu, 12 Aug 2004 21:02:03 -0400

>Subject: RE: Question regarding hearing loss

>Reply-To: Mito

>

>

>

>

>

>

>Thanks ,

>

>Why is it rare for auditory neuropathy to be only one sided? Could it be

>that it is starting in his right ear and progressing to his left ear....

>or would it be likely to be more problems with the brain rather than the

>auditory nerve. As you can see I'm a novice at hearing impairment issues.

>

>I have calmed down since yesterday - it's amazing what people can cope

with

>when we have to. I remember thinking before Asher got his g-tube, that

I

>could never ever stand him to have one, and, later, I was so thankful for

>the g-tube and felt that, well, we could handle that forever as long as

nothing

>else came along. Now I'm beginning to say well, we can deal with a hearing

>impairment (mild now) and, even deal with its progression if we have too.

>I'm glad your son can speak now and that the implants have helped him.

>

>Thanks,

>Anne R

>

>

>

>

>Please contact mito-owner with any problems or questions.

>

>

>

>

>

>

>

>

>Yahoo! Groups

Sponsor

>

>

>

ADVERTISEMENThttp://us.ard.yahoo.com/SIG=12c1i0jdc/M=298184.5285298.6392945.3001176/D=g\

rphealth/S=1705061498:HM/EXP=1092445334/A=2164330/R=0/SIG=11eamf8g4/*http://www.\

netflix.com/Default?mqso=60183350 "

alt= " " >http://us.a1.yimg.com/us.yimg.com/a/ne/netflix/yhoo0504_testa_300250a052604\

..gif "

alt= " click here " width= " 300 " height= " 250 " border= " 0 " >

>

>http://us.adserver.yahoo.com/l?M=298184.5285298.6392945.3001176/D=grphealth\

/S=:HM/A=2164330/rand=174444569 " >

>

>

>

>

>

>

>

>

>

>

>