hearing better :0)

[Guest guest]

hi

back to the ears again for us :0)

ds had a hearing test a couple of weeks back .. sit in between two speakers and

reinforced to turn to the sound by a dancing flashing lights bunny (which he

hated!)

as they did the test (for the one ear that we can get the aid to stay in) with

the aid in, i realised that the sounds they were doing he probably would be able

to hear without the aid ... i asked them to do the test without the aid ... he

tested down to 40 Db without the aid!!! - had tested down to 80 Db in the ABR

test under anesthetic about 3-4 months ago. So we came home with a turned down

hearing aid and pleasantly surprised and affirmed that he is hearing what we

thought he could!

but, what's the deal??? the audiologists were pretty puzzled ... mentioned fluid

-but, that was drained by the ENT just before the ABR test... this latest

hearing test also more in-line with his first ABR done when he was a baby

plus, he hasn't wanted to wear the aid since it was turned down, pulls it out,

and now that he is into posting stuff it takes me ages to find - especially 'cos

he'll pull the mold off and post it somewhere different :0)

any thoughts?

Jo

ds Ben, ds Josh 18 months CHaRGE'r

[Guest guest]

Hi Jo-

I don't know if this applies or not - but it was our experience with

that after he was aided (at the age of three) he started being able to

" hear " better. It is my opinion that he learned to identify what is a sound

better after he was aided. Am I making any sense? Before he was aided, if

alot of people started to clap he would become startled and cry. In

hindsight I think that was because he could hear that and it really startled

him. When he was first aided there were some sounds he would respond to and

others not at all. It was like no sound had even occurred. It wasn't about

how loud they were. Then as time went on, I noticed the range of sounds he

responded to increased - human sounds, environmental sounds etc. Also, some

of it was having meaning attached or experience. Once he realized what a

train whistle sounded like, he identified it even at a distance. So maybe

Josh is just becoming more sophisticated about what sound is.....

's first ABR done at two weeks showed no impairment. His state

required screening for special day pre-school showed severe impairment, and

the subsequent baer confirmed the degree of loss as well as its type (mixed:

both conductive and neurological). Since then his tests have basically been

stable - though there was noticeable improvement on response with aids

during the first year.

Sorry if I confused you- ;-)

Yuka

[Guest guest]

Yuka, I think you do a nice job explaining the perplexities of hearing and

vision. It is not just that they can hear or that they can see, but how does

their brain make sense of the information. I think many of our kids need help

in this area, but don't get it, because all of their hearing and vision issues

are attributed to the known auditory and ocular problems. Kim

Re: hearing better :0)

Hi Jo-

I don't know if this applies or not - but it was our experience with

that after he was aided (at the age of three) he started being able to

" hear " better. It is my opinion that he learned to identify what is a sound

better after he was aided. Am I making any sense? Before he was aided, if

alot of people started to clap he would become startled and cry. In

hindsight I think that was because he could hear that and it really startled

him. When he was first aided there were some sounds he would respond to and

others not at all. It was like no sound had even occurred. It wasn't about

how loud they were. Then as time went on, I noticed the range of sounds he

responded to increased - human sounds, environmental sounds etc. Also, some

of it was having meaning attached or experience. Once he realized what a

train whistle sounded like, he identified it even at a distance. So maybe

Josh is just becoming more sophisticated about what sound is.....

's first ABR done at two weeks showed no impairment. His state

required screening for special day pre-school showed severe impairment, and

the subsequent baer confirmed the degree of loss as well as its type (mixed:

both conductive and neurological). Since then his tests have basically been

stable - though there was noticeable improvement on response with aids

during the first year.

Sorry if I confused you- ;-)

Yuka

Membership of this email support groups does not constitute membership in the

CHARGE Syndrome Foundation.

For information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter)

please contact marion@... or visit

the CHARGE Syndrome Foundation web page

at http://www.chargesyndrome.org

7th International

CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information

will be available at our website

www.chargesyndrome.org or by calling 1-. In Canada, you may contact

CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

[Guest guest]

I've learned (through personal experience) that while most hearing experts

think they know all there is to know about hearing, they really only know a

little.

Most 'experts' will tell you that hearing can't ever improve on it's own.

It can degrade, but not improve, since the ear is formed as it is at birth

and does not regenerate when damaged.

I know 3 kids that have proven these experts wrong. There is only one

expert I've talked to about this that will even discuss the subject

seriously with me. He said that there have been enough cases like this

that some research has been started to try to figure out why, as they just

don't understand it. How refreshing to have an honest answer instead of the

usual denials that sound something like " must have been fluid in the ears "

or " the testing equipment must have been off " . Take a statement like that

and prove them wrong, and they just come up with a more vague excuse or

change the subject entirely. (Most experts don't like to be challenged)

One friend of ours son went from moderate hearing loss, to almost no hearing

loss over a 6 month period. We still don't know why, but it's awesome to

see.

I think with a lot of our Charge kids there is a difference between the ears

working physiologically and the brain processing the info given it by the

ears (cognitively). It may be that an improvement in the cognitive

understanding of the audio input comes across on these tests as an

improvement in hearing. (In a way it is.)

What to take from all of this. Get your kids hearing tested on a regular

basis if they have aids, so the aids can be adjusted properly. If your kid

starts to complain about their aids, get it checked out ( once had an

improvement in her hearing, and would not tolerate her aids, until they

discovered this and turned them down.)

Christian Lobaugh

Husband to Ingrid, Father to (5) and (2 yr old charger)

hearing better :0)

hi

back to the ears again for us :0)

ds had a hearing test a couple of weeks back .. sit in between two speakers

and reinforced to turn to the sound by a dancing flashing lights bunny

(which he hated!)

as they did the test (for the one ear that we can get the aid to stay in)

with the aid in, i realised that the sounds they were doing he probably

would be able to hear without the aid ... i asked them to do the test

without the aid ... he tested down to 40 Db without the aid!!! - had tested

down to 80 Db in the ABR test under anesthetic about 3-4 months ago. So we

came home with a turned down hearing aid and pleasantly surprised and

affirmed that he is hearing what we thought he could!

but, what's the deal??? the audiologists were pretty puzzled ... mentioned

fluid -but, that was drained by the ENT just before the ABR test... this

latest hearing test also more in-line with his first ABR done when he was a

baby

plus, he hasn't wanted to wear the aid since it was turned down, pulls it

out, and now that he is into posting stuff it takes me ages to find -

especially 'cos he'll pull the mold off and post it somewhere different :0)

any thoughts?

Jo

ds Ben, ds Josh 18 months CHaRGE'r