Re: Hello =

[Guest guest]

Hi ,

My daughter le is 8 and has a moderate to severe hearing loss and

was very difficult to test for many years. She was diagnosis at birth

through newborn hearing screening. It took us from birth to 3 years old

to get a totally accurate picture of what her loss was, due to her being

very difficult to test and due to reoccurring ear infections.

I use to wonder the same thing when she wouldn't cooperate for the

testing. I often wondered if her loss was as severe as they said, due

to all the things she heard when her aids are not in. These kids are

remarkable with how much they compensate for, even in the year years. I

was always second guessing myself. Things got better for us when

le was around three and testing became easier for us. I would

condition her at home and play games so she would cooperate for testing.

I would have her hold a block up her hearing aid and when she heard the

noise she would drop the block in the bucket, or you can use candy and

when she's done playing she get to eat the candy as a reward. Kay has

lots of ideas on her Listen Up Website.

Even though we questioned the degree of her loss from birth to approx

3.5 years old (due to how much she heard without aids), her speech was

really delayed and we decided to try another audie for another opinion,

she had a great test and they suggested bumping her aids up 20 db's

more, we were so confused and puzzled on what to do but we gave it a

shot, hoping she would tell us if they were to loud. We saw a

difference in her speech in just several weeks. At that time we were

convinced the new audie was correct and her loss was greater than we

thought or imagined, even though she seemed to hear so much without her

aids. It's so puzzling, but they do compensate so much and learn

different things to get by even at the younger years.

I can tell right away when the aids are not in now, even though she will

try holding a conversation without them in. It frustrates me, far more

than her. Hope this helps.

Take Care,

Mom to le 8 moderate to severe loss etc. etc. etc.

Mom to 12 hearing, allergies.

Hello

Hi,

My name is Carroll. I have a three year old daughter named

who

is hard of hearing. She was originally testing in the mild to moderate

range last year. She is now testing in the moderately severe to severe

range. She has a cookie-bite type of hearing loss, so she can hear the

higher and lower frequencies better than the mid-frequencies. I would

love

to hear from anyone who has a child with this type of hearing loss. She

is

very hard to test, so I it makes me wonder if her hearing is really as

bad

as she is testing. She wears hearing aids and does great with them. But

she can also hear us without them if we are loud enough, which also

makes me

wonder if her hearing is as bad as she is testing. Does anyone have any

experiences like this? She detects speech at 55 decibels, she tested

around

60 decibels in the high and low frequencies and in the 70-80 range in

the

mid-frequencies.

Thanks for any help you can give me.

__________________________________________________________

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[Guest guest]

Hi ,

My daughter le is 8 and has a moderate to severe hearing loss and

was very difficult to test for many years. She was diagnosis at birth

through newborn hearing screening. It took us from birth to 3 years old

to get a totally accurate picture of what her loss was, due to her being

very difficult to test and due to reoccurring ear infections.

I use to wonder the same thing when she wouldn't cooperate for the

testing. I often wondered if her loss was as severe as they said, due

to all the things she heard when her aids are not in. These kids are

remarkable with how much they compensate for, even in the year years. I

was always second guessing myself. Things got better for us when

le was around three and testing became easier for us. I would

condition her at home and play games so she would cooperate for testing.

I would have her hold a block up her hearing aid and when she heard the

noise she would drop the block in the bucket, or you can use candy and

when she's done playing she get to eat the candy as a reward. Kay has

lots of ideas on her Listen Up Website.

Even though we questioned the degree of her loss from birth to approx

3.5 years old (due to how much she heard without aids), her speech was

really delayed and we decided to try another audie for another opinion,

she had a great test and they suggested bumping her aids up 20 db's

more, we were so confused and puzzled on what to do but we gave it a

shot, hoping she would tell us if they were to loud. We saw a

difference in her speech in just several weeks. At that time we were

convinced the new audie was correct and her loss was greater than we

thought or imagined, even though she seemed to hear so much without her

aids. It's so puzzling, but they do compensate so much and learn

different things to get by even at the younger years.

I can tell right away when the aids are not in now, even though she will

try holding a conversation without them in. It frustrates me, far more

than her. Hope this helps.

Take Care,

Mom to le 8 moderate to severe loss etc. etc. etc.

Mom to 12 hearing, allergies.

Hello

Hi,

My name is Carroll. I have a three year old daughter named

who

is hard of hearing. She was originally testing in the mild to moderate

range last year. She is now testing in the moderately severe to severe

range. She has a cookie-bite type of hearing loss, so she can hear the

higher and lower frequencies better than the mid-frequencies. I would

love

to hear from anyone who has a child with this type of hearing loss. She

is

very hard to test, so I it makes me wonder if her hearing is really as

bad

as she is testing. She wears hearing aids and does great with them. But

she can also hear us without them if we are loud enough, which also

makes me

wonder if her hearing is as bad as she is testing. Does anyone have any

experiences like this? She detects speech at 55 decibels, she tested

around

60 decibels in the high and low frequencies and in the 70-80 range in

the

mid-frequencies.

Thanks for any help you can give me.

__________________________________________________________

Try the new Live Search today!

http://imagine-

http://imagine-windowslive.com/minisites/searchlaunch/?locale=en-us&FOR

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[Guest guest]

Hi ,

My daughter le is 8 and has a moderate to severe hearing loss and

was very difficult to test for many years. She was diagnosis at birth

through newborn hearing screening. It took us from birth to 3 years old

to get a totally accurate picture of what her loss was, due to her being

very difficult to test and due to reoccurring ear infections.

I use to wonder the same thing when she wouldn't cooperate for the

testing. I often wondered if her loss was as severe as they said, due

to all the things she heard when her aids are not in. These kids are

remarkable with how much they compensate for, even in the year years. I

was always second guessing myself. Things got better for us when

le was around three and testing became easier for us. I would

condition her at home and play games so she would cooperate for testing.

I would have her hold a block up her hearing aid and when she heard the

noise she would drop the block in the bucket, or you can use candy and

when she's done playing she get to eat the candy as a reward. Kay has

lots of ideas on her Listen Up Website.

Even though we questioned the degree of her loss from birth to approx

3.5 years old (due to how much she heard without aids), her speech was

really delayed and we decided to try another audie for another opinion,

she had a great test and they suggested bumping her aids up 20 db's

more, we were so confused and puzzled on what to do but we gave it a

shot, hoping she would tell us if they were to loud. We saw a

difference in her speech in just several weeks. At that time we were

convinced the new audie was correct and her loss was greater than we

thought or imagined, even though she seemed to hear so much without her

aids. It's so puzzling, but they do compensate so much and learn

different things to get by even at the younger years.

I can tell right away when the aids are not in now, even though she will

try holding a conversation without them in. It frustrates me, far more

than her. Hope this helps.

Take Care,

Mom to le 8 moderate to severe loss etc. etc. etc.

Mom to 12 hearing, allergies.

Hello

Hi,

My name is Carroll. I have a three year old daughter named

who

is hard of hearing. She was originally testing in the mild to moderate

range last year. She is now testing in the moderately severe to severe

range. She has a cookie-bite type of hearing loss, so she can hear the

higher and lower frequencies better than the mid-frequencies. I would

love

to hear from anyone who has a child with this type of hearing loss. She

is

very hard to test, so I it makes me wonder if her hearing is really as

bad

as she is testing. She wears hearing aids and does great with them. But

she can also hear us without them if we are loud enough, which also

makes me

wonder if her hearing is as bad as she is testing. Does anyone have any

experiences like this? She detects speech at 55 decibels, she tested

around

60 decibels in the high and low frequencies and in the 70-80 range in

the

mid-frequencies.

Thanks for any help you can give me.

__________________________________________________________

Try the new Live Search today!

http://imagine-

http://imagine-windowslive.com/minisites/searchlaunch/?locale=en-us&FOR

M=WLMTAG>

windowslive.com/minisites/searchlaunch/?locale=en-us&FORM=WLMTAG

[Guest guest]

, don't know how I missed your original post. I'm , Maggie's mom,

Maggie is 15 and was diagnosed at age 3 3/4. She had much more language than

expected when she was diagnosed. In fact the audie told me later that based on

her speech she expected a mild loss and couldn't believe the audiogram at

mod-severe. So she did more testing and sure enough that's where she really was.

You are describing the same shape of loss that Maggie has or had, since it is

more sloping now than it used to be. She started out in the 30db in the lows,

40 db in highs above 8K and 65ish in between. That was at diagnosis which was

11 years ago! Now she is 50's in the lows, 65 in the mids and 80 from 4K on

up. (Doing this from memory so I could be a little off). From watching old

family videos we saw that she went from lap to lap at family gatherings and she

always fussed until you picked her up so she kept herself within earshot. Also,

as they learn the way words sound with their hearing aids, they are able to

identify those words when not wearing hearing aids because they hear some of it

and fill in the blanks. I really noticed this with Maggie when bathing her.

After a few months of hearing aids and AV it seemed like her hearing had

improved because she could understand so much when she was in the tub. And you

mentioned that she detects speech at 55 db, if you are talking loudly your

speech is probably 65-70 db, so she probably hears it like a whisper but enough

to figure things out.

So when did your daughter get diagnosed and get hearing aids?? It looks like

her hearing loss has progressed, do you think this will continue?? Did she

need new aids with the increase in hearing loss?? Do you know the cause of the

loss?

[Guest guest]

, don't know how I missed your original post. I'm , Maggie's mom,

Maggie is 15 and was diagnosed at age 3 3/4. She had much more language than

expected when she was diagnosed. In fact the audie told me later that based on

her speech she expected a mild loss and couldn't believe the audiogram at

mod-severe. So she did more testing and sure enough that's where she really was.

You are describing the same shape of loss that Maggie has or had, since it is

more sloping now than it used to be. She started out in the 30db in the lows,

40 db in highs above 8K and 65ish in between. That was at diagnosis which was

11 years ago! Now she is 50's in the lows, 65 in the mids and 80 from 4K on

up. (Doing this from memory so I could be a little off). From watching old

family videos we saw that she went from lap to lap at family gatherings and she

always fussed until you picked her up so she kept herself within earshot. Also,

as they learn the way words sound with their hearing aids, they are able to

identify those words when not wearing hearing aids because they hear some of it

and fill in the blanks. I really noticed this with Maggie when bathing her.

After a few months of hearing aids and AV it seemed like her hearing had

improved because she could understand so much when she was in the tub. And you

mentioned that she detects speech at 55 db, if you are talking loudly your

speech is probably 65-70 db, so she probably hears it like a whisper but enough

to figure things out.

So when did your daughter get diagnosed and get hearing aids?? It looks like

her hearing loss has progressed, do you think this will continue?? Did she

need new aids with the increase in hearing loss?? Do you know the cause of the

loss?

[Guest guest]

, don't know how I missed your original post. I'm , Maggie's mom,

Maggie is 15 and was diagnosed at age 3 3/4. She had much more language than

expected when she was diagnosed. In fact the audie told me later that based on

her speech she expected a mild loss and couldn't believe the audiogram at

mod-severe. So she did more testing and sure enough that's where she really was.

You are describing the same shape of loss that Maggie has or had, since it is

more sloping now than it used to be. She started out in the 30db in the lows,

40 db in highs above 8K and 65ish in between. That was at diagnosis which was

11 years ago! Now she is 50's in the lows, 65 in the mids and 80 from 4K on

up. (Doing this from memory so I could be a little off). From watching old

family videos we saw that she went from lap to lap at family gatherings and she

always fussed until you picked her up so she kept herself within earshot. Also,

as they learn the way words sound with their hearing aids, they are able to

identify those words when not wearing hearing aids because they hear some of it

and fill in the blanks. I really noticed this with Maggie when bathing her.

After a few months of hearing aids and AV it seemed like her hearing had

improved because she could understand so much when she was in the tub. And you

mentioned that she detects speech at 55 db, if you are talking loudly your

speech is probably 65-70 db, so she probably hears it like a whisper but enough

to figure things out.

So when did your daughter get diagnosed and get hearing aids?? It looks like

her hearing loss has progressed, do you think this will continue?? Did she

need new aids with the increase in hearing loss?? Do you know the cause of the

loss?

[Guest guest]

My daughter was " officially " diagnosed in the fall of last year. She had

fluid in her ears for what I think was about a year. Her previous

pediatrician never mentioned anything about fluid when she went in with all

of her ear infections. We finally got PE tubes and thought that would help

her hearing, but we found out that was not the case. She did not have any

speech until she received her hearing aids in November of last year. Her

hearing loss has progressed. She went from mild to moderatly severe/severe

in less than a year. Her audiologist has no prognosis as to whether or not

her hearing will get worse. She says she doesn't know. She did not need

new hearing aids. They just turned them up significantly. The one thing I

have noticed is they whistle a lot more than they did. If she is lying down

or even when I put them in her ear, they whistle. Her audiologist said this

was normal and one of her ear molds may need to be redone. We just did one

a couple weeks ago as my dog chewed it to pieces. We do not know the cause

of her loss. We are participating in genetic testing at Galludet(sorry if I

spelled it incorrectly). We should hear something by the end of the year.

We don't have any hearing loss in the family, but one of the questions they

asked was if anyone in the family had hair that grayed early. My husband

did as well as my sister. I know there is a syndrome associated with a

white patch in the hair, but I don't know if it is the same. She currently

goes to the special education class at our elementary school five days a

week in the afternoon and gets speech therapy three times a week. She LOVES

school and I am thrilled. She can be very hard to please so I am glad she

has taken so well to her new class.

Thanks for your information about your daughter. It confuses me how she can

have a loss that seems so bad, but can still pick up some speech. I am glad

to hear this is " normal " for a child with this kind of loss. It amazes me

how they adapt.

>From: pcknott@...

>Reply-To: Listen-Up

>To: Listen-Up

>Subject: RE: Hello =

>Date: Tue, 26 Sep 2006 15:52:35 -0400 (GMT-04:00)

>

>, don't know how I missed your original post. I'm , Maggie's

>mom, Maggie is 15 and was diagnosed at age 3 3/4. She had much more

>language than expected when she was diagnosed. In fact the audie told me

>later that based on her speech she expected a mild loss and couldn't

>believe the audiogram at mod-severe. So she did more testing and sure

>enough that's where she really was. You are describing the same shape of

>loss that Maggie has or had, since it is more sloping now than it used to

>be. She started out in the 30db in the lows, 40 db in highs above 8K and

>65ish in between. That was at diagnosis which was 11 years ago! Now she

>is 50's in the lows, 65 in the mids and 80 from 4K on up. (Doing this from

>memory so I could be a little off). From watching old family videos we saw

>that she went from lap to lap at family gatherings and she always fussed

>until you picked her up so she kept herself within earshot. Also, as they

>learn the way words sound with their hearing aids, they are able to

>identify those words when not wearing hearing aids because they hear some

>of it and fill in the blanks. I really noticed this with Maggie when

>bathing her. After a few months of hearing aids and AV it seemed like her

>hearing had improved because she could understand so much when she was in

>the tub. And you mentioned that she detects speech at 55 db, if you are

>talking loudly your speech is probably 65-70 db, so she probably hears it

>like a whisper but enough to figure things out.

>

>So when did your daughter get diagnosed and get hearing aids?? It looks

>like her hearing loss has progressed, do you think this will continue??

>Did she need new aids with the increase in hearing loss?? Do you know the

>cause of the loss?

>

>

>

_________________________________________________________________

Add fun gadgets and colorful themes to express yourself on Windows Live

Spaces

http://clk.atdmt.com/MSN/go/msnnkwsp0070000001msn/direct/01/?href=http://www.get\

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[Guest guest]

My daughter was " officially " diagnosed in the fall of last year. She had

fluid in her ears for what I think was about a year. Her previous

pediatrician never mentioned anything about fluid when she went in with all

of her ear infections. We finally got PE tubes and thought that would help

her hearing, but we found out that was not the case. She did not have any

speech until she received her hearing aids in November of last year. Her

hearing loss has progressed. She went from mild to moderatly severe/severe

in less than a year. Her audiologist has no prognosis as to whether or not

her hearing will get worse. She says she doesn't know. She did not need

new hearing aids. They just turned them up significantly. The one thing I

have noticed is they whistle a lot more than they did. If she is lying down

or even when I put them in her ear, they whistle. Her audiologist said this

was normal and one of her ear molds may need to be redone. We just did one

a couple weeks ago as my dog chewed it to pieces. We do not know the cause

of her loss. We are participating in genetic testing at Galludet(sorry if I

spelled it incorrectly). We should hear something by the end of the year.

We don't have any hearing loss in the family, but one of the questions they

asked was if anyone in the family had hair that grayed early. My husband

did as well as my sister. I know there is a syndrome associated with a

white patch in the hair, but I don't know if it is the same. She currently

goes to the special education class at our elementary school five days a

week in the afternoon and gets speech therapy three times a week. She LOVES

school and I am thrilled. She can be very hard to please so I am glad she

has taken so well to her new class.

Thanks for your information about your daughter. It confuses me how she can

have a loss that seems so bad, but can still pick up some speech. I am glad

to hear this is " normal " for a child with this kind of loss. It amazes me

how they adapt.

>From: pcknott@...

>Reply-To: Listen-Up

>To: Listen-Up

>Subject: RE: Hello =

>Date: Tue, 26 Sep 2006 15:52:35 -0400 (GMT-04:00)

>

>, don't know how I missed your original post. I'm , Maggie's

>mom, Maggie is 15 and was diagnosed at age 3 3/4. She had much more

>language than expected when she was diagnosed. In fact the audie told me

>later that based on her speech she expected a mild loss and couldn't

>believe the audiogram at mod-severe. So she did more testing and sure

>enough that's where she really was. You are describing the same shape of

>loss that Maggie has or had, since it is more sloping now than it used to

>be. She started out in the 30db in the lows, 40 db in highs above 8K and

>65ish in between. That was at diagnosis which was 11 years ago! Now she

>is 50's in the lows, 65 in the mids and 80 from 4K on up. (Doing this from

>memory so I could be a little off). From watching old family videos we saw

>that she went from lap to lap at family gatherings and she always fussed

>until you picked her up so she kept herself within earshot. Also, as they

>learn the way words sound with their hearing aids, they are able to

>identify those words when not wearing hearing aids because they hear some

>of it and fill in the blanks. I really noticed this with Maggie when

>bathing her. After a few months of hearing aids and AV it seemed like her

>hearing had improved because she could understand so much when she was in

>the tub. And you mentioned that she detects speech at 55 db, if you are

>talking loudly your speech is probably 65-70 db, so she probably hears it

>like a whisper but enough to figure things out.

>

>So when did your daughter get diagnosed and get hearing aids?? It looks

>like her hearing loss has progressed, do you think this will continue??

>Did she need new aids with the increase in hearing loss?? Do you know the

>cause of the loss?

>

>

>

_________________________________________________________________

Add fun gadgets and colorful themes to express yourself on Windows Live

Spaces

http://clk.atdmt.com/MSN/go/msnnkwsp0070000001msn/direct/01/?href=http://www.get\

..live.com/spaces/features

[Guest guest]

My daughter was " officially " diagnosed in the fall of last year. She had

fluid in her ears for what I think was about a year. Her previous

pediatrician never mentioned anything about fluid when she went in with all

of her ear infections. We finally got PE tubes and thought that would help

her hearing, but we found out that was not the case. She did not have any

speech until she received her hearing aids in November of last year. Her

hearing loss has progressed. She went from mild to moderatly severe/severe

in less than a year. Her audiologist has no prognosis as to whether or not

her hearing will get worse. She says she doesn't know. She did not need

new hearing aids. They just turned them up significantly. The one thing I

have noticed is they whistle a lot more than they did. If she is lying down

or even when I put them in her ear, they whistle. Her audiologist said this

was normal and one of her ear molds may need to be redone. We just did one

a couple weeks ago as my dog chewed it to pieces. We do not know the cause

of her loss. We are participating in genetic testing at Galludet(sorry if I

spelled it incorrectly). We should hear something by the end of the year.

We don't have any hearing loss in the family, but one of the questions they

asked was if anyone in the family had hair that grayed early. My husband

did as well as my sister. I know there is a syndrome associated with a

white patch in the hair, but I don't know if it is the same. She currently

goes to the special education class at our elementary school five days a

week in the afternoon and gets speech therapy three times a week. She LOVES

school and I am thrilled. She can be very hard to please so I am glad she

has taken so well to her new class.

Thanks for your information about your daughter. It confuses me how she can

have a loss that seems so bad, but can still pick up some speech. I am glad

to hear this is " normal " for a child with this kind of loss. It amazes me

how they adapt.

>From: pcknott@...

>Reply-To: Listen-Up

>To: Listen-Up

>Subject: RE: Hello =

>Date: Tue, 26 Sep 2006 15:52:35 -0400 (GMT-04:00)

>

>, don't know how I missed your original post. I'm , Maggie's

>mom, Maggie is 15 and was diagnosed at age 3 3/4. She had much more

>language than expected when she was diagnosed. In fact the audie told me

>later that based on her speech she expected a mild loss and couldn't

>believe the audiogram at mod-severe. So she did more testing and sure

>enough that's where she really was. You are describing the same shape of

>loss that Maggie has or had, since it is more sloping now than it used to

>be. She started out in the 30db in the lows, 40 db in highs above 8K and

>65ish in between. That was at diagnosis which was 11 years ago! Now she

>is 50's in the lows, 65 in the mids and 80 from 4K on up. (Doing this from

>memory so I could be a little off). From watching old family videos we saw

>that she went from lap to lap at family gatherings and she always fussed

>until you picked her up so she kept herself within earshot. Also, as they

>learn the way words sound with their hearing aids, they are able to

>identify those words when not wearing hearing aids because they hear some

>of it and fill in the blanks. I really noticed this with Maggie when

>bathing her. After a few months of hearing aids and AV it seemed like her

>hearing had improved because she could understand so much when she was in

>the tub. And you mentioned that she detects speech at 55 db, if you are

>talking loudly your speech is probably 65-70 db, so she probably hears it

>like a whisper but enough to figure things out.

>

>So when did your daughter get diagnosed and get hearing aids?? It looks

>like her hearing loss has progressed, do you think this will continue??

>Did she need new aids with the increase in hearing loss?? Do you know the

>cause of the loss?

>

>

>

_________________________________________________________________

Add fun gadgets and colorful themes to express yourself on Windows Live

Spaces

http://clk.atdmt.com/MSN/go/msnnkwsp0070000001msn/direct/01/?href=http://www.get\

..live.com/spaces/features

[Guest guest]

Thanks for writing. We just had another test where they tried the play

audiometry with blocks, but she would have none of it. She has the type of

personality where she likes to do things her way when she wants to, so if

she is not in the mood to test, then we can forget it! They did get some

results testing the usual way and they turned her hearing aids up 10db's. I

have noticed a difference and the volume on the TV has come back down to a

mild roar. Can your daughter read lips? If so, when did she start?

Thanks,

>

>Reply-To: Listen-Up

>To: Listen-Up >

>Subject: RE: Hello =

>Date: Tue, 26 Sep 2006 14:29:18 -0400

>

>Hi ,

>My daughter le is 8 and has a moderate to severe hearing loss and

>was very difficult to test for many years. She was diagnosis at birth

>through newborn hearing screening. It took us from birth to 3 years old

>to get a totally accurate picture of what her loss was, due to her being

>very difficult to test and due to reoccurring ear infections.

>I use to wonder the same thing when she wouldn't cooperate for the

>testing. I often wondered if her loss was as severe as they said, due

>to all the things she heard when her aids are not in. These kids are

>remarkable with how much they compensate for, even in the year years. I

>was always second guessing myself. Things got better for us when

>le was around three and testing became easier for us. I would

>condition her at home and play games so she would cooperate for testing.

>I would have her hold a block up her hearing aid and when she heard the

>noise she would drop the block in the bucket, or you can use candy and

>when she's done playing she get to eat the candy as a reward. Kay has

>lots of ideas on her Listen Up Website.

>Even though we questioned the degree of her loss from birth to approx

>3.5 years old (due to how much she heard without aids), her speech was

>really delayed and we decided to try another audie for another opinion,

>she had a great test and they suggested bumping her aids up 20 db's

>more, we were so confused and puzzled on what to do but we gave it a

>shot, hoping she would tell us if they were to loud. We saw a

>difference in her speech in just several weeks. At that time we were

>convinced the new audie was correct and her loss was greater than we

>thought or imagined, even though she seemed to hear so much without her

>aids. It's so puzzling, but they do compensate so much and learn

>different things to get by even at the younger years.

>I can tell right away when the aids are not in now, even though she will

>try holding a conversation without them in. It frustrates me, far more

>than her. Hope this helps.

>Take Care,

>Mom to le 8 moderate to severe loss etc. etc. etc.

>Mom to 12 hearing, allergies.

> Hello

>

>Hi,

>My name is Carroll. I have a three year old daughter named

>who

>is hard of hearing. She was originally testing in the mild to moderate

>range last year. She is now testing in the moderately severe to severe

>range. She has a cookie-bite type of hearing loss, so she can hear the

>higher and lower frequencies better than the mid-frequencies. I would

>love

>to hear from anyone who has a child with this type of hearing loss. She

>is

>very hard to test, so I it makes me wonder if her hearing is really as

>bad

>as she is testing. She wears hearing aids and does great with them. But

>she can also hear us without them if we are loud enough, which also

>makes me

>wonder if her hearing is as bad as she is testing. Does anyone have any

>experiences like this? She detects speech at 55 decibels, she tested

>around

>60 decibels in the high and low frequencies and in the 70-80 range in

>the

>mid-frequencies.

>

>Thanks for any help you can give me.

>

>

>

>__________________________________________________________

>Try the new Live Search today!

>http://imagine-

>http://imagine-windowslive.com/minisites/searchlaunch/?locale=en-us&FOR

>M=WLMTAG>

>windowslive.com/minisites/searchlaunch/?locale=en-us&FORM=WLMTAG

>

>

>

>

[Guest guest]

Thanks for writing. We just had another test where they tried the play

audiometry with blocks, but she would have none of it. She has the type of

personality where she likes to do things her way when she wants to, so if

she is not in the mood to test, then we can forget it! They did get some

results testing the usual way and they turned her hearing aids up 10db's. I

have noticed a difference and the volume on the TV has come back down to a

mild roar. Can your daughter read lips? If so, when did she start?

Thanks,

>

>Reply-To: Listen-Up

>To: Listen-Up >

>Subject: RE: Hello =

>Date: Tue, 26 Sep 2006 14:29:18 -0400

>

>Hi ,

>My daughter le is 8 and has a moderate to severe hearing loss and

>was very difficult to test for many years. She was diagnosis at birth

>through newborn hearing screening. It took us from birth to 3 years old

>to get a totally accurate picture of what her loss was, due to her being

>very difficult to test and due to reoccurring ear infections.

>I use to wonder the same thing when she wouldn't cooperate for the

>testing. I often wondered if her loss was as severe as they said, due

>to all the things she heard when her aids are not in. These kids are

>remarkable with how much they compensate for, even in the year years. I

>was always second guessing myself. Things got better for us when

>le was around three and testing became easier for us. I would

>condition her at home and play games so she would cooperate for testing.

>I would have her hold a block up her hearing aid and when she heard the

>noise she would drop the block in the bucket, or you can use candy and

>when she's done playing she get to eat the candy as a reward. Kay has

>lots of ideas on her Listen Up Website.

>Even though we questioned the degree of her loss from birth to approx

>3.5 years old (due to how much she heard without aids), her speech was

>really delayed and we decided to try another audie for another opinion,

>she had a great test and they suggested bumping her aids up 20 db's

>more, we were so confused and puzzled on what to do but we gave it a

>shot, hoping she would tell us if they were to loud. We saw a

>difference in her speech in just several weeks. At that time we were

>convinced the new audie was correct and her loss was greater than we

>thought or imagined, even though she seemed to hear so much without her

>aids. It's so puzzling, but they do compensate so much and learn

>different things to get by even at the younger years.

>I can tell right away when the aids are not in now, even though she will

>try holding a conversation without them in. It frustrates me, far more

>than her. Hope this helps.

>Take Care,

>Mom to le 8 moderate to severe loss etc. etc. etc.

>Mom to 12 hearing, allergies.

> Hello

>

>Hi,

>My name is Carroll. I have a three year old daughter named

>who

>is hard of hearing. She was originally testing in the mild to moderate

>range last year. She is now testing in the moderately severe to severe

>range. She has a cookie-bite type of hearing loss, so she can hear the

>higher and lower frequencies better than the mid-frequencies. I would

>love

>to hear from anyone who has a child with this type of hearing loss. She

>is

>very hard to test, so I it makes me wonder if her hearing is really as

>bad

>as she is testing. She wears hearing aids and does great with them. But

>she can also hear us without them if we are loud enough, which also

>makes me

>wonder if her hearing is as bad as she is testing. Does anyone have any

>experiences like this? She detects speech at 55 decibels, she tested

>around

>60 decibels in the high and low frequencies and in the 70-80 range in

>the

>mid-frequencies.

>

>Thanks for any help you can give me.

>

>

>

>__________________________________________________________

>Try the new Live Search today!

>http://imagine-

>http://imagine-windowslive.com/minisites/searchlaunch/?locale=en-us&FOR

>M=WLMTAG>

>windowslive.com/minisites/searchlaunch/?locale=en-us&FORM=WLMTAG

>

>

>

>

[Guest guest]

Thanks for writing. We just had another test where they tried the play

audiometry with blocks, but she would have none of it. She has the type of

personality where she likes to do things her way when she wants to, so if

she is not in the mood to test, then we can forget it! They did get some

results testing the usual way and they turned her hearing aids up 10db's. I

have noticed a difference and the volume on the TV has come back down to a

mild roar. Can your daughter read lips? If so, when did she start?

Thanks,

>

>Reply-To: Listen-Up

>To: Listen-Up >

>Subject: RE: Hello =

>Date: Tue, 26 Sep 2006 14:29:18 -0400

>

>Hi ,

>My daughter le is 8 and has a moderate to severe hearing loss and

>was very difficult to test for many years. She was diagnosis at birth

>through newborn hearing screening. It took us from birth to 3 years old

>to get a totally accurate picture of what her loss was, due to her being

>very difficult to test and due to reoccurring ear infections.

>I use to wonder the same thing when she wouldn't cooperate for the

>testing. I often wondered if her loss was as severe as they said, due

>to all the things she heard when her aids are not in. These kids are

>remarkable with how much they compensate for, even in the year years. I

>was always second guessing myself. Things got better for us when

>le was around three and testing became easier for us. I would

>condition her at home and play games so she would cooperate for testing.

>I would have her hold a block up her hearing aid and when she heard the

>noise she would drop the block in the bucket, or you can use candy and

>when she's done playing she get to eat the candy as a reward. Kay has

>lots of ideas on her Listen Up Website.

>Even though we questioned the degree of her loss from birth to approx

>3.5 years old (due to how much she heard without aids), her speech was

>really delayed and we decided to try another audie for another opinion,

>she had a great test and they suggested bumping her aids up 20 db's

>more, we were so confused and puzzled on what to do but we gave it a

>shot, hoping she would tell us if they were to loud. We saw a

>difference in her speech in just several weeks. At that time we were

>convinced the new audie was correct and her loss was greater than we

>thought or imagined, even though she seemed to hear so much without her

>aids. It's so puzzling, but they do compensate so much and learn

>different things to get by even at the younger years.

>I can tell right away when the aids are not in now, even though she will

>try holding a conversation without them in. It frustrates me, far more

>than her. Hope this helps.

>Take Care,

>Mom to le 8 moderate to severe loss etc. etc. etc.

>Mom to 12 hearing, allergies.

> Hello

>

>Hi,

>My name is Carroll. I have a three year old daughter named

>who

>is hard of hearing. She was originally testing in the mild to moderate

>range last year. She is now testing in the moderately severe to severe

>range. She has a cookie-bite type of hearing loss, so she can hear the

>higher and lower frequencies better than the mid-frequencies. I would

>love

>to hear from anyone who has a child with this type of hearing loss. She

>is

>very hard to test, so I it makes me wonder if her hearing is really as

>bad

>as she is testing. She wears hearing aids and does great with them. But

>she can also hear us without them if we are loud enough, which also

>makes me

>wonder if her hearing is as bad as she is testing. Does anyone have any

>experiences like this? She detects speech at 55 decibels, she tested

>around

>60 decibels in the high and low frequencies and in the 70-80 range in

>the

>mid-frequencies.

>

>Thanks for any help you can give me.

>

>

>

>__________________________________________________________

>Try the new Live Search today!

>http://imagine-

>http://imagine-windowslive.com/minisites/searchlaunch/?locale=en-us&FOR

>M=WLMTAG>

>windowslive.com/minisites/searchlaunch/?locale=en-us&FORM=WLMTAG

>

>

>

>

[Guest guest]

Waardenburg Syndrome typically includes a white streak of hair early in life

(sometimes in toddlers, even), usually around the temple, and/or the person's

hair goes gray earlier than normal. Other features of WS include

differently-colored eyes (one brown, one blue, for example), wide-set eyes, and

hearing loss--often at birth. If the hearing loss appears later, it is

progressive, and typically starts around puberty.

Most people with WS have one or two of the features. It runs in my husband's

family, and pretty much everyone who had it had a white streak of hair and

hearing loss starting around puberty, including my mother-in-law and her father.

If there was no white streak, there was no hearing loss. My husband has a

*patch* of white hair that he's had since he was an infant, so there's a chance

he has it, although his hearing is good well into his 40s now. We did have our

son tested for it, but the results were negative--despite his first ENT's claim

that if WS is in the family, then it MUST be the reason for our son's hearing

loss. Our son has none of the other features of WS at all, and unlike the family

pattern, he was apparently born hearing impaired, and his hearing has actually

*improved* since he was first diagnosed at the age of four months.

The whistling is most likely poorly-fitting ear molds. When our son has gone

through growth spurts, he's had to get new molds at least every 3-4 months. He's

12 now, and generally goes a year or so between molds, but the whistling is the

biggest tip that he's outgrown the current pair.

Kiminy

Carroll wendymattinglycarroll@...> wrote:

She did not need

new hearing aids. They just turned them up significantly. The one thing I

have noticed is they whistle a lot more than they did. If she is lying down

or even when I put them in her ear, they whistle. Her audiologist said this

was normal and one of her ear molds may need to be redone. We just did one

a couple weeks ago as my dog chewed it to pieces. We do not know the cause

of her loss. We are participating in genetic testing at Galludet(sorry if I

spelled it incorrectly). We should hear something by the end of the year.

We don't have any hearing loss in the family, but one of the questions they

asked was if anyone in the family had hair that grayed early. My husband

did as well as my sister. I know there is a syndrome associated with a

white patch in the hair, but I don't know if it is the same.

---------------------------------

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[Guest guest]

Waardenburg Syndrome typically includes a white streak of hair early in life

(sometimes in toddlers, even), usually around the temple, and/or the person's

hair goes gray earlier than normal. Other features of WS include

differently-colored eyes (one brown, one blue, for example), wide-set eyes, and

hearing loss--often at birth. If the hearing loss appears later, it is

progressive, and typically starts around puberty.

Most people with WS have one or two of the features. It runs in my husband's

family, and pretty much everyone who had it had a white streak of hair and

hearing loss starting around puberty, including my mother-in-law and her father.

If there was no white streak, there was no hearing loss. My husband has a

*patch* of white hair that he's had since he was an infant, so there's a chance

he has it, although his hearing is good well into his 40s now. We did have our

son tested for it, but the results were negative--despite his first ENT's claim

that if WS is in the family, then it MUST be the reason for our son's hearing

loss. Our son has none of the other features of WS at all, and unlike the family

pattern, he was apparently born hearing impaired, and his hearing has actually

*improved* since he was first diagnosed at the age of four months.

The whistling is most likely poorly-fitting ear molds. When our son has gone

through growth spurts, he's had to get new molds at least every 3-4 months. He's

12 now, and generally goes a year or so between molds, but the whistling is the

biggest tip that he's outgrown the current pair.

Kiminy

Carroll wendymattinglycarroll@...> wrote:

She did not need

new hearing aids. They just turned them up significantly. The one thing I

have noticed is they whistle a lot more than they did. If she is lying down

or even when I put them in her ear, they whistle. Her audiologist said this

was normal and one of her ear molds may need to be redone. We just did one

a couple weeks ago as my dog chewed it to pieces. We do not know the cause

of her loss. We are participating in genetic testing at Galludet(sorry if I

spelled it incorrectly). We should hear something by the end of the year.

We don't have any hearing loss in the family, but one of the questions they

asked was if anyone in the family had hair that grayed early. My husband

did as well as my sister. I know there is a syndrome associated with a

white patch in the hair, but I don't know if it is the same.

---------------------------------

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[Guest guest]

My sons loss is associated with Waardenburg Syndrome...profound loss at

birth ..my middle daughter has 1 brown and 1 blue eye and is 9 and already

has a white streak in her hair...

~Cathy~

-- RE: Hello =

Waardenburg Syndrome typically includes a white streak of hair early in life

(sometimes in toddlers, even), usually around the temple, and/or the person

s hair goes gray earlier than normal. Other features of WS include

differently-colored eyes (one brown, one blue, for example), wide-set eyes,

and hearing loss--often at birth. If the hearing loss appears later, it is

progressive, and typically starts around puberty.

Most people with WS have one or two of the features. It runs in my husband's

family, and pretty much everyone who had it had a white streak of hair and

hearing loss starting around puberty, including my mother-in-law and her

father. If there was no white streak, there was no hearing loss. My husband

has a *patch* of white hair that he's had since he was an infant, so there's

a chance he has it, although his hearing is good well into his 40s now. We

did have our son tested for it, but the results were negative--despite his

first ENT's claim that if WS is in the family, then it MUST be the reason

for our son's hearing loss. Our son has none of the other features of WS at

all, and unlike the family pattern, he was apparently born hearing impaired,

and his hearing has actually *improved* since he was first diagnosed at the

age of four months.

The whistling is most likely poorly-fitting ear molds. When our son has gone

through growth spurts, he's had to get new molds at least every 3-4 months.

He's 12 now, and generally goes a year or so between molds, but the

whistling is the biggest tip that he's outgrown the current pair.

Kiminy

Carroll wendymattinglycarroll@...> wrote:

She did not need

new hearing aids. They just turned them up significantly. The one thing I

have noticed is they whistle a lot more than they did. If she is lying down

or even when I put them in her ear, they whistle. Her audiologist said this

was normal and one of her ear molds may need to be redone. We just did one

a couple weeks ago as my dog chewed it to pieces. We do not know the cause

of her loss. We are participating in genetic testing at Galludet(sorry if I

spelled it incorrectly). We should hear something by the end of the year.

We don't have any hearing loss in the family, but one of the questions they

asked was if anyone in the family had hair that grayed early. My husband

did as well as my sister. I know there is a syndrome associated with a

white patch in the hair, but I don't know if it is the same.

---------------------------------

How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates.

[Guest guest]

My sons loss is associated with Waardenburg Syndrome...profound loss at

birth ..my middle daughter has 1 brown and 1 blue eye and is 9 and already

has a white streak in her hair...

~Cathy~

-- RE: Hello =

Waardenburg Syndrome typically includes a white streak of hair early in life

(sometimes in toddlers, even), usually around the temple, and/or the person

s hair goes gray earlier than normal. Other features of WS include

differently-colored eyes (one brown, one blue, for example), wide-set eyes,

and hearing loss--often at birth. If the hearing loss appears later, it is

progressive, and typically starts around puberty.

Most people with WS have one or two of the features. It runs in my husband's

family, and pretty much everyone who had it had a white streak of hair and

hearing loss starting around puberty, including my mother-in-law and her

father. If there was no white streak, there was no hearing loss. My husband

has a *patch* of white hair that he's had since he was an infant, so there's

a chance he has it, although his hearing is good well into his 40s now. We

did have our son tested for it, but the results were negative--despite his

first ENT's claim that if WS is in the family, then it MUST be the reason

for our son's hearing loss. Our son has none of the other features of WS at

all, and unlike the family pattern, he was apparently born hearing impaired,

and his hearing has actually *improved* since he was first diagnosed at the

age of four months.

The whistling is most likely poorly-fitting ear molds. When our son has gone

through growth spurts, he's had to get new molds at least every 3-4 months.

He's 12 now, and generally goes a year or so between molds, but the

whistling is the biggest tip that he's outgrown the current pair.

Kiminy

Carroll wendymattinglycarroll@...> wrote:

She did not need

new hearing aids. They just turned them up significantly. The one thing I

have noticed is they whistle a lot more than they did. If she is lying down

or even when I put them in her ear, they whistle. Her audiologist said this

was normal and one of her ear molds may need to be redone. We just did one

a couple weeks ago as my dog chewed it to pieces. We do not know the cause

of her loss. We are participating in genetic testing at Galludet(sorry if I

spelled it incorrectly). We should hear something by the end of the year.

We don't have any hearing loss in the family, but one of the questions they

asked was if anyone in the family had hair that grayed early. My husband

did as well as my sister. I know there is a syndrome associated with a

white patch in the hair, but I don't know if it is the same.

---------------------------------

How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates.

[Guest guest]

Yes le can read lips. I can’t say for sure when it started. In

her toddler days if you were holding her and talking she would always

pull your chin

so she could look at you talking. She has other issues besides hearing

loss and has no useful vision in her left eye, but is very visual. She

always looks at

people when they are talking to her.

le sounds a lot like your daughter was when testing at the younger

years. She was a bear and very difficult, but through conditioning her

of what was

expected and explaining over and over again, what was to be expected she

finally got it around 3 ½ years old. We played many games and turned

them into listening games and always followed it up with a reward of

some sort . Even as an infant with the ABR testing, she was sedated and

woke up every time.

le was identified at birth and we battle with testing for over 3

years getting her to cooperate before we were certain what her loss was.

She is very strong willed even to this day, and sometimes that works for

us but a lot of times it works against us. She has a strong desire to

learn and reads all the time. We are so proud of her, even though she

is very trying at times.

Hope this helps, I totally understand how frustrating it can be to go

for testing and hope to have answers, to have not much more than you

walked in with. I think this was one of the most difficult things for

me to deal with through this journey.

This list has been a wonderful source of information, support, praise

and hope for me. I don’t post much but I read every email that comes

through in hopes of learning more everyday. I don’t know what I would

of done without a place like this to fall too. Feel free to ask any

questions, even if you feel they are dumb. Everyone has gone through

exactly what you are going through right now and understand. It was

always a safe place for me to fall, because we are all dealing with the

same thing and understand just what you are feeling.

Take Care,

Colleen .

Hello

>

>Hi,

>My name is Carroll. I have a three year old daughter named

>who

>is hard of hearing. She was originally testing in the mild to moderate

>range last year. She is now testing in the moderately severe to severe

>range. She has a cookie-bite type of hearing loss, so she can hear the

>higher and lower frequencies better than the mid-frequencies. I would

>love

>to hear from anyone who has a child with this type of hearing loss. She

>is

>very hard to test, so I it makes me wonder if her hearing is really as

>bad

>as she is testing. She wears hearing aids and does great with them. But

>she can also hear us without them if we are loud enough, which also

>makes me

>wonder if her hearing is as bad as she is testing. Does anyone have any

>experiences like this? She detects speech at 55 decibels, she tested

>around

>60 decibels in the high and low frequencies and in the 70-80 range in

>the

>mid-frequencies.

>

>Thanks for any help you can give me.

>

>

>

>__________________________________________________________

>Try the new Live Search today!

>http://imagine-

>http://imagine-

http://imagine-windowslive.com/minisites/searchlaunch/?locale=en-us&FOR

> windowslive.com/minisites/searchlaunch/?locale=en-us&FOR

>M=WLMTAG>

>windowslive.com/minisites/searchlaunch/?locale=en-us&FORM=WLMTAG

>

>

>

>

[Guest guest]

Yes le can read lips. I can’t say for sure when it started. In

her toddler days if you were holding her and talking she would always

pull your chin

so she could look at you talking. She has other issues besides hearing

loss and has no useful vision in her left eye, but is very visual. She

always looks at

people when they are talking to her.

le sounds a lot like your daughter was when testing at the younger

years. She was a bear and very difficult, but through conditioning her

of what was

expected and explaining over and over again, what was to be expected she

finally got it around 3 ½ years old. We played many games and turned

them into listening games and always followed it up with a reward of

some sort . Even as an infant with the ABR testing, she was sedated and

woke up every time.

le was identified at birth and we battle with testing for over 3

years getting her to cooperate before we were certain what her loss was.

She is very strong willed even to this day, and sometimes that works for

us but a lot of times it works against us. She has a strong desire to

learn and reads all the time. We are so proud of her, even though she

is very trying at times.

Hope this helps, I totally understand how frustrating it can be to go

for testing and hope to have answers, to have not much more than you

walked in with. I think this was one of the most difficult things for

me to deal with through this journey.

This list has been a wonderful source of information, support, praise

and hope for me. I don’t post much but I read every email that comes

through in hopes of learning more everyday. I don’t know what I would

of done without a place like this to fall too. Feel free to ask any

questions, even if you feel they are dumb. Everyone has gone through

exactly what you are going through right now and understand. It was

always a safe place for me to fall, because we are all dealing with the

same thing and understand just what you are feeling.

Take Care,

Colleen .

Hello

>

>Hi,

>My name is Carroll. I have a three year old daughter named

>who

>is hard of hearing. She was originally testing in the mild to moderate

>range last year. She is now testing in the moderately severe to severe

>range. She has a cookie-bite type of hearing loss, so she can hear the

>higher and lower frequencies better than the mid-frequencies. I would

>love

>to hear from anyone who has a child with this type of hearing loss. She

>is

>very hard to test, so I it makes me wonder if her hearing is really as

>bad

>as she is testing. She wears hearing aids and does great with them. But

>she can also hear us without them if we are loud enough, which also

>makes me

>wonder if her hearing is as bad as she is testing. Does anyone have any

>experiences like this? She detects speech at 55 decibels, she tested

>around

>60 decibels in the high and low frequencies and in the 70-80 range in

>the

>mid-frequencies.

>

>Thanks for any help you can give me.

>

>

>

>__________________________________________________________

>Try the new Live Search today!

>http://imagine-

>http://imagine-

http://imagine-windowslive.com/minisites/searchlaunch/?locale=en-us&FOR

> windowslive.com/minisites/searchlaunch/?locale=en-us&FOR

>M=WLMTAG>

>windowslive.com/minisites/searchlaunch/?locale=en-us&FORM=WLMTAG

>

>

>

>

[Guest guest]

Yes le can read lips. I can’t say for sure when it started. In

her toddler days if you were holding her and talking she would always

pull your chin

so she could look at you talking. She has other issues besides hearing

loss and has no useful vision in her left eye, but is very visual. She

always looks at

people when they are talking to her.

le sounds a lot like your daughter was when testing at the younger

years. She was a bear and very difficult, but through conditioning her

of what was

expected and explaining over and over again, what was to be expected she

finally got it around 3 ½ years old. We played many games and turned

them into listening games and always followed it up with a reward of

some sort . Even as an infant with the ABR testing, she was sedated and

woke up every time.

le was identified at birth and we battle with testing for over 3

years getting her to cooperate before we were certain what her loss was.

She is very strong willed even to this day, and sometimes that works for

us but a lot of times it works against us. She has a strong desire to

learn and reads all the time. We are so proud of her, even though she

is very trying at times.

Hope this helps, I totally understand how frustrating it can be to go

for testing and hope to have answers, to have not much more than you

walked in with. I think this was one of the most difficult things for

me to deal with through this journey.

This list has been a wonderful source of information, support, praise

and hope for me. I don’t post much but I read every email that comes

through in hopes of learning more everyday. I don’t know what I would

of done without a place like this to fall too. Feel free to ask any

questions, even if you feel they are dumb. Everyone has gone through

exactly what you are going through right now and understand. It was

always a safe place for me to fall, because we are all dealing with the

same thing and understand just what you are feeling.

Take Care,

Colleen .

Hello

>

>Hi,

>My name is Carroll. I have a three year old daughter named

>who

>is hard of hearing. She was originally testing in the mild to moderate

>range last year. She is now testing in the moderately severe to severe

>range. She has a cookie-bite type of hearing loss, so she can hear the

>higher and lower frequencies better than the mid-frequencies. I would

>love

>to hear from anyone who has a child with this type of hearing loss. She

>is

>very hard to test, so I it makes me wonder if her hearing is really as

>bad

>as she is testing. She wears hearing aids and does great with them. But

>she can also hear us without them if we are loud enough, which also

>makes me

>wonder if her hearing is as bad as she is testing. Does anyone have any

>experiences like this? She detects speech at 55 decibels, she tested

>around

>60 decibels in the high and low frequencies and in the 70-80 range in

>the

>mid-frequencies.

>

>Thanks for any help you can give me.

>

>

>

>__________________________________________________________

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[Guest guest]

My daughter shows none of these signs, other than hearing loss. We just

have history of graying early. Do you think that means we can rule out

Waardenburg Syndrome?

Thanks,

>

>Reply-To: Listen-Up

>To: Listen-Up >

>Subject: RE: Hello =

>Date: Tue, 26 Sep 2006 19:04:48 -0500 (Central Standard Time)

>

>My sons loss is associated with Waardenburg Syndrome...profound loss at

>birth ..my middle daughter has 1 brown and 1 blue eye and is 9 and already

>has a white streak in her hair...

>

>

>

>~Cathy~

>

>

>

>

>

>

>

>-- RE: Hello =

>

>

>

>Waardenburg Syndrome typically includes a white streak of hair early in

>life

>(sometimes in toddlers, even), usually around the temple, and/or the person

>s hair goes gray earlier than normal. Other features of WS include

>differently-colored eyes (one brown, one blue, for example), wide-set eyes,

>and hearing loss--often at birth. If the hearing loss appears later, it is

>progressive, and typically starts around puberty.

>

>

>

>Most people with WS have one or two of the features. It runs in my

>husband's

>family, and pretty much everyone who had it had a white streak of hair and

>hearing loss starting around puberty, including my mother-in-law and her

>father. If there was no white streak, there was no hearing loss. My husband

>has a *patch* of white hair that he's had since he was an infant, so

>there's

>a chance he has it, although his hearing is good well into his 40s now. We

>did have our son tested for it, but the results were negative--despite his

>first ENT's claim that if WS is in the family, then it MUST be the reason

>for our son's hearing loss. Our son has none of the other features of WS at

>all, and unlike the family pattern, he was apparently born hearing

>impaired,

>and his hearing has actually *improved* since he was first diagnosed at the

>age of four months.

>

>

>

>The whistling is most likely poorly-fitting ear molds. When our son has

>gone

>through growth spurts, he's had to get new molds at least every 3-4 months.

>He's 12 now, and generally goes a year or so between molds, but the

>whistling is the biggest tip that he's outgrown the current pair.

>

>

>

>Kiminy

>

>

>

> Carroll wendymattinglycarroll@...> wrote:

>

>She did not need

>

>new hearing aids. They just turned them up significantly. The one thing I

>

>have noticed is they whistle a lot more than they did. If she is lying down

>

>or even when I put them in her ear, they whistle. Her audiologist said this

>

>was normal and one of her ear molds may need to be redone. We just did one

>

>a couple weeks ago as my dog chewed it to pieces. We do not know the cause

>

>of her loss. We are participating in genetic testing at Galludet(sorry if I

>

>spelled it incorrectly). We should hear something by the end of the year.

>

>We don't have any hearing loss in the family, but one of the questions they

>

>asked was if anyone in the family had hair that grayed early. My husband

>

>did as well as my sister. I know there is a syndrome associated with a

>

>white patch in the hair, but I don't know if it is the same.

>

>

>

>

>

>---------------------------------

>

>How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call

>rates.

>

>

>

>

[Guest guest]

Our Ian's eyes are slightly wide set, and it is also a marker for the

syndrome he has, Goldenhar.

BUT you and I would not be able to tell this just by looking at him. My

family and my hubby's have large eyes, my husband's has long lashes and blue

eyes. Combine these two families and my kids' eyes stand out, but they don't

look

oddly placed. 's are fine. Ian are not. But it took a specialist

measuring his skull to determine that he was just beyond the range of normal on

several measurements.

His eye measurements are a touch off, as is his jaw and the distance from

his eye to his ear on the right. All of these are imperceptible to us mere

mortals. Ian's hearing loss stood out, the brachial cyst removed when he was

6-weeks-old stood out, and both are also big attention getting markers for

syndromes that he does not have.

In my experience, a geneticist is the one to make the call about which

syndrome things point to. I drove myself to distraction trying to diagnose Ian

via

the internet. because doctors (not geneticists) suspected different

syndromes. The best thing I did for ME was to take him to the geneticist and

have him

figure it out. And it turned out for some of Ian " markers " that sometime a

cigar is just a cigar.

Best -- Jill

[Guest guest]

Nope I wouldn't yet... because it could just be 1 of the characteristics of

it...being shown up the hearing loss.....does she have wide spread eyes.

almost looking Chinese? you can have 1 or all 6 of the characteristics and

still have it..

~Cathy~

-- RE: Hello =

>

>

>

>Waardenburg Syndrome typically includes a white streak of hair early in

>life

>(sometimes in toddlers, even), usually around the temple, and/or the person

>s hair goes gray earlier than normal. Other features of WS include

>differently-colored eyes (one brown, one blue, for example), wide-set eyes,

>and hearing loss--often at birth. If the hearing loss appears later, it is

>progressive, and typically starts around puberty.

>

>

>

>Most people with WS have one or two of the features. It runs in my

>husband's

>family, and pretty much everyone who had it had a white streak of hair and

>hearing loss starting around puberty, including my mother-in-law and her

>father. If there was no white streak, there was no hearing loss. My husband

>has a *patch* of white hair that he's had since he was an infant, so

>there's

>a chance he has it, although his hearing is good well into his 40s now. We

>did have our son tested for it, but the results were negative--despite his

>first ENT's claim that if WS is in the family, then it MUST be the reason

>for our son's hearing loss. Our son has none of the other features of WS at

>all, and unlike the family pattern, he was apparently born hearing

>impaired,

>and his hearing has actually *improved* since he was first diagnosed at the

>age of four months.

>

>

>

>The whistling is most likely poorly-fitting ear molds. When our son has

>gone

>through growth spurts, he's had to get new molds at least every 3-4 months.

>He's 12 now, and generally goes a year or so between molds, but the

>whistling is the biggest tip that he's outgrown the current pair.

>

>

>

>Kiminy

>

>

>

> Carroll wendymattinglycarroll@...> wrote:

>

>She did not need

>

>new hearing aids. They just turned them up significantly. The one thing I

>

>have noticed is they whistle a lot more than they did. If she is lying down

>

>or even when I put them in her ear, they whistle. Her audiologist said this

>

>was normal and one of her ear molds may need to be redone. We just did one

>

>a couple weeks ago as my dog chewed it to pieces. We do not know the cause

>

>of her loss. We are participating in genetic testing at Galludet(sorry if I

>

>spelled it incorrectly). We should hear something by the end of the year.

>

>We don't have any hearing loss in the family, but one of the questions they

>

>asked was if anyone in the family had hair that grayed early. My husband

>

>did as well as my sister. I know there is a syndrome associated with a

>

>white patch in the hair, but I don't know if it is the same.

>

>

>

>

>

>---------------------------------

>

>How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call

>rates.

>

>

>

>

[Guest guest]

No, I wouldn't say her eyes look like they are spread widely apart. Are

there any other things associated with this syndrome that are not physical

characteristics (other than the hearing)? What causes the hearing loss in

people with this sydrome?

>

>Reply-To: Listen-Up

>To: Listen-Up >

>Subject: RE: Hello =

>Date: Wed, 27 Sep 2006 08:10:16 -0500 (Central Standard Time)

>

>Nope I wouldn't yet... because it could just be 1 of the characteristics of

>it...being shown up the hearing loss.....does she have wide spread eyes.

>almost looking Chinese? you can have 1 or all 6 of the characteristics and

>still have it..

>

>

>

>~Cathy~

>

>

>

>-- RE: Hello =

>

> >

>

> >

>

> >

>

> >Waardenburg Syndrome typically includes a white streak of hair early in

>

> >life

>

> >(sometimes in toddlers, even), usually around the temple, and/or the

>person

>

> >s hair goes gray earlier than normal. Other features of WS include

>

> >differently-colored eyes (one brown, one blue, for example), wide-set

>eyes,

>

> >and hearing loss--often at birth. If the hearing loss appears later, it

>is

>

> >progressive, and typically starts around puberty.

>

> >

>

> >

>

> >

>

> >Most people with WS have one or two of the features. It runs in my

>

> >husband's

>

> >family, and pretty much everyone who had it had a white streak of hair

>and

>

> >hearing loss starting around puberty, including my mother-in-law and her

>

> >father. If there was no white streak, there was no hearing loss. My

>husband

>

> >has a *patch* of white hair that he's had since he was an infant, so

>

> >there's

>

> >a chance he has it, although his hearing is good well into his 40s now.

>We

>

> >did have our son tested for it, but the results were negative--despite

>his

>

> >first ENT's claim that if WS is in the family, then it MUST be the reason

>

> >for our son's hearing loss. Our son has none of the other features of WS

>at

>

> >all, and unlike the family pattern, he was apparently born hearing

>

> >impaired,

>

> >and his hearing has actually *improved* since he was first diagnosed at

>the

>

> >age of four months.

>

> >

>

> >

>

> >

>

> >The whistling is most likely poorly-fitting ear molds. When our son has

>

> >gone

>

> >through growth spurts, he's had to get new molds at least every 3-4

>months.

>

> >He's 12 now, and generally goes a year or so between molds, but the

>

> >whistling is the biggest tip that he's outgrown the current pair.

>

> >

>

> >

>

> >

>

> >Kiminy

>

> >

>

> >

>

> >

>

> > Carroll wendymattinglycarroll@...> wrote:

>

> >

>

> >She did not need

>

> >

>

> >new hearing aids. They just turned them up significantly. The one thing I

>

> >

>

> >have noticed is they whistle a lot more than they did. If she is lying

>down

>

> >

>

> >or even when I put them in her ear, they whistle. Her audiologist said

>this

>

> >

>

> >was normal and one of her ear molds may need to be redone. We just did

>one

>

> >

>

> >a couple weeks ago as my dog chewed it to pieces. We do not know the

>cause

>

> >

>

> >of her loss. We are participating in genetic testing at Galludet(sorry if

>I

>

> >

>

> >spelled it incorrectly). We should hear something by the end of the year.

>

> >

>

> >We don't have any hearing loss in the family, but one of the questions

>they

>

> >

>

> >asked was if anyone in the family had hair that grayed early. My husband

>

> >

>

> >did as well as my sister. I know there is a syndrome associated with a

>

> >

>

> >white patch in the hair, but I don't know if it is the same.

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >---------------------------------

>

> >

>

> >How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call

>

> >rates.

>

> >

>

> >

>

> >

>

> >

[Guest guest]

Premature graying is a possible sign of WS. There is a genetic test available if

you want to either rule it out or confirm it, but other than the possibility of

progressive hearing loss--which can be treated symptomatically--there are no

other health implications to it.

We went for years of having doctors insist that our son had WS based purely on

family history, while we were just as insistent that he didn't have it because

his features were radically different from the family history. We finally had

the blood test done mainly to prove to doctors that he does not have WS, so that

they would more seriously consider other possibilities. (We still have no

answers or reasons, but since his hearing is not getting worse, and he seems to

be doing well in other areas, we've stopped asking " why. " )

Carroll wendymattinglycarroll@...> wrote:

My daughter shows none of these signs, other than hearing loss. We just

have history of graying early. Do you think that means we can rule out

Waardenburg Syndrome?

---------------------------------

How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates.

[Guest guest]

I can scan and send you off list the papers I have on it ..if you want me

too..and another is the cleft palate...but my kids didn't have that but my

cousin does.... i will send you a picture of my daughter that has the brown

and blue eye she does have the wide spread..too

ok..

~Cathy~

-- RE: Hello =

>

> >

>

> >

>

> >

>

> >Waardenburg Syndrome typically includes a white streak of hair early in

>

> >life

>

> >(sometimes in toddlers, even), usually around the temple, and/or the

>person

>

> >s hair goes gray earlier than normal. Other features of WS include

>

> >differently-colored eyes (one brown, one blue, for example), wide-set

>eyes,

>

> >and hearing loss--often at birth. If the hearing loss appears later, it

>is

>

> >progressive, and typically starts around puberty.

>

> >

>

> >

>

> >

>

> >Most people with WS have one or two of the features. It runs in my

>

> >husband's

>

> >family, and pretty much everyone who had it had a white streak of hair

>and

>

> >hearing loss starting around puberty, including my mother-in-law and her

>

> >father. If there was no white streak, there was no hearing loss. My

>husband

>

> >has a *patch* of white hair that he's had since he was an infant, so

>

> >there's

>

> >a chance he has it, although his hearing is good well into his 40s now.

>We

>

> >did have our son tested for it, but the results were negative--despite

>his

>

> >first ENT's claim that if WS is in the family, then it MUST be the reason

>

> >for our son's hearing loss. Our son has none of the other features of WS

>at

>

> >all, and unlike the family pattern, he was apparently born hearing

>

> >impaired,

>

> >and his hearing has actually *improved* since he was first diagnosed at

>the

>

> >age of four months.

>

> >

>

> >

>

> >

>

> >The whistling is most likely poorly-fitting ear molds. When our son has

>

> >gone

>

> >through growth spurts, he's had to get new molds at least every 3-4

>months.

>

> >He's 12 now, and generally goes a year or so between molds, but the

>

> >whistling is the biggest tip that he's outgrown the current pair.

>

> >

>

> >

>

> >

>

> >Kiminy

>

> >

>

> >

>

> >

>

> > Carroll wendymattinglycarroll@...> wrote:

>

> >

>

> >She did not need

>

> >

>

> >new hearing aids. They just turned them up significantly. The one thing I

>

> >

>

> >have noticed is they whistle a lot more than they did. If she is lying

>down

>

> >

>

> >or even when I put them in her ear, they whistle. Her audiologist said

>this

>

> >

>

> >was normal and one of her ear molds may need to be redone. We just did

>one

>

> >

>

> >a couple weeks ago as my dog chewed it to pieces. We do not know the

>cause

>

> >

>

> >of her loss. We are participating in genetic testing at Galludet(sorry if

>I

>

> >

>

> >spelled it incorrectly). We should hear something by the end of the year.

>

> >

>

> >We don't have any hearing loss in the family, but one of the questions

>they

>

> >

>

> >asked was if anyone in the family had hair that grayed early. My husband

>

> >

>

> >did as well as my sister. I know there is a syndrome associated with a

>

> >

>

> >white patch in the hair, but I don't know if it is the same.

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >---------------------------------

>

> >

>

> >How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call

>

> >rates.

>

> >

>

> >

>

> >

>

> >