old member with a new listing

[Guest guest]

I was written before under the member name as colleenfisher2001, how

it has been some time and was unable to remember my listing. How

this doesn't cause any problems. I really loved the group just time

and relocation has caused me to not stay on top of things. I was

living in New Orleans and moved to Lafayette prior to the storm due

to my husbands job. My daughter was set to a deaf/hoh school in the

area, however I was told that the hearing issues was not her problem

and that she really didn't need to be there.

To make a long story short, I have been having a great deal of

trouble with the issues with hoh and the fact that my daughter seems

to be having unusually hearing loss. I was first deaf in the right

ear, left ear find at 3 years old. The questionable earing loss left

ear. Looked at AN through Dr. Berlin and was told that wasn't the

problem. The loss was then called reverse slope hearing loss. Then

it became a mild hearing loss with the 1000-1500hz being in normal

range. This caused people to feel that she had a fluctuating hearing

loss. Now just less than a month ago, right as school was getting

ready to close she has gone from a mild hearing loss to moderate

hearing loss. At least a 40db drop in the 1000-1500hz and the rest

drop right along with it. She now at45db-250hz; 50db at 500-1500hz;

65db at 2000hz; 50db at 3000hz; 55db at 4000hz; 70db at 6000-8000hz.

Speech threshold was at 25db and is now at 50dbs. I feel a little

confused. I have been seeing a pattern about every two to three

years. I don't know any one with hearing loss to tell me if this is

a normal pattern. I felt that things would stay steady for a while

before it would change. She just made nine and I have no clue at

what is cauing this. I have been told now that it can stay here for

a while, it could go up, it can flucated in this present area or it

could go down. Just a wait and see. I just find this hard to believe

that hearing loss is such a guessing game with all the modern

technology. Looking for any insight, words of widsom or maybe

someone has or is dealing with similar issues.

One other problem is that oral and visual has been the main way of

teaching. The reason is that when we tried sign laugauge at age 5,

she has problems in her left hadnd with moving her fingers to make a

lot of the signs. So any other means of teaching ideas, if she does

become profound would be great. I am aware of the implant and

understand that as much oral now will help if that is a path we may

have to go done. I know it has been wonderful for so many.

Thanks and again so long!!!

Colleen

[Guest guest]

I need to write and respond to you later. I am a transplant to the

northeast and due to the storms and not being able to maintain the

yard, there are tons of weeds. I will write to you about some

thoughts and clarification I need from you.

Welcome back!

mary

>

> I was written before under the member name as colleenfisher2001,

how

> it has been some time and was unable to remember my listing. How

> this doesn't cause any problems. I really loved the group just

time

> and relocation has caused me to not stay on top of things. I was

> living in New Orleans and moved to Lafayette prior to the storm

due

> to my husbands job. My daughter was set to a deaf/hoh school in

the

> area, however I was told that the hearing issues was not her

problem

> and that she really didn't need to be there.

>

> To make a long story short, I have been having a great deal of

> trouble with the issues with hoh and the fact that my daughter

seems

> to be having unusually hearing loss. I was first deaf in the right

> ear, left ear find at 3 years old. The questionable earing loss

left

> ear. Looked at AN through Dr. Berlin and was told that wasn't the

> problem. The loss was then called reverse slope hearing loss. Then

> it became a mild hearing loss with the 1000-1500hz being in normal

> range. This caused people to feel that she had a fluctuating

hearing

> loss. Now just less than a month ago, right as school was getting

> ready to close she has gone from a mild hearing loss to moderate

> hearing loss. At least a 40db drop in the 1000-1500hz and the rest

> drop right along with it. She now at45db-250hz; 50db at 500-

1500hz;

> 65db at 2000hz; 50db at 3000hz; 55db at 4000hz; 70db at 6000-

8000hz.

> Speech threshold was at 25db and is now at 50dbs. I feel a little

> confused. I have been seeing a pattern about every two to three

> years. I don't know any one with hearing loss to tell me if this

is

> a normal pattern. I felt that things would stay steady for a while

> before it would change. She just made nine and I have no clue at

> what is cauing this. I have been told now that it can stay here

for

> a while, it could go up, it can flucated in this present area or

it

> could go down. Just a wait and see. I just find this hard to

believe

> that hearing loss is such a guessing game with all the modern

> technology. Looking for any insight, words of widsom or maybe

> someone has or is dealing with similar issues.

>

> One other problem is that oral and visual has been the main way of

> teaching. The reason is that when we tried sign laugauge at age 5,

> she has problems in her left hadnd with moving her fingers to make

a

> lot of the signs. So any other means of teaching ideas, if she

does

> become profound would be great. I am aware of the implant and

> understand that as much oral now will help if that is a path we

may

> have to go done. I know it has been wonderful for so many.

>

> Thanks and again so long!!!

> Colleen

>

[Guest guest]

The up and down fluctuation really sounds like Enlarged Vestibular

Aqueducts (what my girls have). Has she had a CT scan or MRI looking

for this? (It is a temporal bone malformation). Good Luck!

Cathy

>

> I was written before under the member name as colleenfisher2001, how

> it has been some time and was unable to remember my listing. How

> this doesn't cause any problems. I really loved the group just time

> and relocation has caused me to not stay on top of things. I was

> living in New Orleans and moved to Lafayette prior to the storm due

> to my husbands job. My daughter was set to a deaf/hoh school in the

> area, however I was told that the hearing issues was not her problem

> and that she really didn't need to be there.

>

> To make a long story short, I have been having a great deal of

> trouble with the issues with hoh and the fact that my daughter seems

> to be having unusually hearing loss. I was first deaf in the right

> ear, left ear find at 3 years old. The questionable earing loss left

> ear. Looked at AN through Dr. Berlin and was told that wasn't the

> problem. The loss was then called reverse slope hearing loss. Then

> it became a mild hearing loss with the 1000-1500hz being in normal

> range. This caused people to feel that she had a fluctuating hearing

> loss. Now just less than a month ago, right as school was getting

> ready to close she has gone from a mild hearing loss to moderate

> hearing loss. At least a 40db drop in the 1000-1500hz and the rest

> drop right along with it. She now at45db-250hz; 50db at 500-1500hz;

> 65db at 2000hz; 50db at 3000hz; 55db at 4000hz; 70db at 6000-8000hz.

> Speech threshold was at 25db and is now at 50dbs. I feel a little

> confused. I have been seeing a pattern about every two to three

> years. I don't know any one with hearing loss to tell me if this is

> a normal pattern. I felt that things would stay steady for a while

> before it would change. She just made nine and I have no clue at

> what is cauing this. I have been told now that it can stay here for

> a while, it could go up, it can flucated in this present area or it

> could go down. Just a wait and see. I just find this hard to believe

> that hearing loss is such a guessing game with all the modern

> technology. Looking for any insight, words of widsom or maybe

> someone has or is dealing with similar issues.

>

> One other problem is that oral and visual has been the main way of

> teaching. The reason is that when we tried sign laugauge at age 5,

> she has problems in her left hadnd with moving her fingers to make a

> lot of the signs. So any other means of teaching ideas, if she does

> become profound would be great. I am aware of the implant and

> understand that as much oral now will help if that is a path we may

> have to go done. I know it has been wonderful for so many.

>

> Thanks and again so long!!!

> Colleen

>

[Guest guest]

Make sure you get both if the CT scan is not that conclusive. The MRI will

show the endolymphatic sacs, too.

>

>

> The up and down fluctuation really sounds like Enlarged Vestibular

> Aqueducts (what my girls have). Has she had a CT scan or MRI looking

> for this? (It is a temporal bone malformation). Good Luck!

>

> Cathy

>

>

> >

> > I was written before under the member name as colleenfisher2001, how

> > it has been some time and was unable to remember my listing. How

> > this doesn't cause any problems. I really loved the group just time

> > and relocation has caused me to not stay on top of things. I was

> > living in New Orleans and moved to Lafayette prior to the storm due

> > to my husbands job. My daughter was set to a deaf/hoh school in the

> > area, however I was told that the hearing issues was not her problem

> > and that she really didn't need to be there.

> >

> > To make a long story short, I have been having a great deal of

> > trouble with the issues with hoh and the fact that my daughter seems

> > to be having unusually hearing loss. I was first deaf in the right

> > ear, left ear find at 3 years old. The questionable earing loss left

> > ear. Looked at AN through Dr. Berlin and was told that wasn't the

> > problem. The loss was then called reverse slope hearing loss. Then

> > it became a mild hearing loss with the 1000-1500hz being in normal

> > range. This caused people to feel that she had a fluctuating hearing

> > loss. Now just less than a month ago, right as school was getting

> > ready to close she has gone from a mild hearing loss to moderate

> > hearing loss. At least a 40db drop in the 1000-1500hz and the rest

> > drop right along with it. She now at45db-250hz; 50db at 500-1500hz;

> > 65db at 2000hz; 50db at 3000hz; 55db at 4000hz; 70db at 6000-8000hz.

> > Speech threshold was at 25db and is now at 50dbs. I feel a little

> > confused. I have been seeing a pattern about every two to three

> > years. I don't know any one with hearing loss to tell me if this is

> > a normal pattern. I felt that things would stay steady for a while

> > before it would change. She just made nine and I have no clue at

> > what is cauing this. I have been told now that it can stay here for

> > a while, it could go up, it can flucated in this present area or it

> > could go down. Just a wait and see. I just find this hard to believe

> > that hearing loss is such a guessing game with all the modern

> > technology. Looking for any insight, words of widsom or maybe

> > someone has or is dealing with similar issues.

> >

> > One other problem is that oral and visual has been the main way of

> > teaching. The reason is that when we tried sign laugauge at age 5,

> > she has problems in her left hadnd with moving her fingers to make a

> > lot of the signs. So any other means of teaching ideas, if she does

> > become profound would be great. I am aware of the implant and

> > understand that as much oral now will help if that is a path we may

> > have to go done. I know it has been wonderful for so many.

> >

> > Thanks and again so long!!!

> > Colleen

> >

>

>

>

--

Robin Tomlinson

thetomlinsons@...

[Guest guest]

She has had 3 MRI and just this month has had a Ct scan along with

an EKG. Found nothing. My sister's daughter was sick for three weeks

with high fevers on and off and found out that she has Q & T

syndrome which has hearing loss associated with it and can run in

the family and found out that this is what ENT was looking for in

the EKG and Jessie was find. I feel that Enlarged Vestibular

Aqueducts makes sense because she also is four years or greater in

coordination and muscle tone. I am presently taking her to her

sensory intergation program this summer.

Colleen

-- In Listen-Up , " catgb2004 " wrote:

>

>

> The up and down fluctuation really sounds like Enlarged Vestibular

> Aqueducts (what my girls have). Has she had a CT scan or MRI

looking

> for this? (It is a temporal bone malformation). Good Luck!

>

> Cathy

>

>

> >

> > I was written before under the member name as colleenfisher2001,

how

> > it has been some time and was unable to remember my listing. How

> > this doesn't cause any problems. I really loved the group just

time

> > and relocation has caused me to not stay on top of things. I was

> > living in New Orleans and moved to Lafayette prior to the storm

due

> > to my husbands job. My daughter was set to a deaf/hoh school in

the

> > area, however I was told that the hearing issues was not her

problem

> > and that she really didn't need to be there.

> >

> > To make a long story short, I have been having a great deal of

> > trouble with the issues with hoh and the fact that my daughter

seems

> > to be having unusually hearing loss. I was first deaf in the

right

> > ear, left ear find at 3 years old. The questionable earing loss

left

> > ear. Looked at AN through Dr. Berlin and was told that wasn't

the

> > problem. The loss was then called reverse slope hearing loss.

Then

> > it became a mild hearing loss with the 1000-1500hz being in

normal

> > range. This caused people to feel that she had a fluctuating

hearing

> > loss. Now just less than a month ago, right as school was

getting

> > ready to close she has gone from a mild hearing loss to moderate

> > hearing loss. At least a 40db drop in the 1000-1500hz and the

rest

> > drop right along with it. She now at45db-250hz; 50db at 500-

1500hz;

> > 65db at 2000hz; 50db at 3000hz; 55db at 4000hz; 70db at 6000-

8000hz.

> > Speech threshold was at 25db and is now at 50dbs. I feel a

little

> > confused. I have been seeing a pattern about every two to three

> > years. I don't know any one with hearing loss to tell me if this

is

> > a normal pattern. I felt that things would stay steady for a

while

> > before it would change. She just made nine and I have no clue at

> > what is cauing this. I have been told now that it can stay here

for

> > a while, it could go up, it can flucated in this present area or

it

> > could go down. Just a wait and see. I just find this hard to

believe

> > that hearing loss is such a guessing game with all the modern

> > technology. Looking for any insight, words of widsom or maybe

> > someone has or is dealing with similar issues.

> >

> > One other problem is that oral and visual has been the main way

of

> > teaching. The reason is that when we tried sign laugauge at age

5,

> > she has problems in her left hadnd with moving her fingers to

make a

> > lot of the signs. So any other means of teaching ideas, if she

does

> > become profound would be great. I am aware of the implant and

> > understand that as much oral now will help if that is a path we

may

> > have to go done. I know it has been wonderful for so many.

> >

> > Thanks and again so long!!!

> > Colleen

> >

>

[Guest guest]

I quess one of my main questions is, is it common for children with

deafness/hoh not to have diagnoses of what caused or is causing the

loss. I am glad to be back and have been doing a lot of reading. The

wealth of information that no one else tells you about is wonderful.

For example the different type of methods to dry out an hearing aid.

I was giving the Super Dri-Aid and never thought that there can be

anything else out there. I smiled when someone in the group was

talking about the aid being washed. I can't tell you how may times

Jessie jumps into the pool or tub and forgets she has it on. It is

such a daily part of her that I really don't think she thinks twice

about the aid.

> > >

> > > I was written before under the member name as

colleenfisher2001, how

> > > it has been some time and was unable to remember my listing.

How

> > > this doesn't cause any problems. I really loved the group just

time

> > > and relocation has caused me to not stay on top of things. I

was

> > > living in New Orleans and moved to Lafayette prior to the

storm due

> > > to my husbands job. My daughter was set to a deaf/hoh school

in the

> > > area, however I was told that the hearing issues was not her

problem

> > > and that she really didn't need to be there.

> > >

> > > To make a long story short, I have been having a great deal of

> > > trouble with the issues with hoh and the fact that my daughter

seems

> > > to be having unusually hearing loss. I was first deaf in the

right

> > > ear, left ear find at 3 years old. The questionable earing

loss left

> > > ear. Looked at AN through Dr. Berlin and was told that wasn't

the

> > > problem. The loss was then called reverse slope hearing loss.

Then

> > > it became a mild hearing loss with the 1000-1500hz being in

normal

> > > range. This caused people to feel that she had a fluctuating

hearing

> > > loss. Now just less than a month ago, right as school was

getting

> > > ready to close she has gone from a mild hearing loss to

moderate

> > > hearing loss. At least a 40db drop in the 1000-1500hz and the

rest

> > > drop right along with it. She now at45db-250hz; 50db at 500-

1500hz;

> > > 65db at 2000hz; 50db at 3000hz; 55db at 4000hz; 70db at 6000-

8000hz.

> > > Speech threshold was at 25db and is now at 50dbs. I feel a

little

> > > confused. I have been seeing a pattern about every two to three

> > > years. I don't know any one with hearing loss to tell me if

this is

> > > a normal pattern. I felt that things would stay steady for a

while

> > > before it would change. She just made nine and I have no clue

at

> > > what is cauing this. I have been told now that it can stay

here for

> > > a while, it could go up, it can flucated in this present area

or it

> > > could go down. Just a wait and see. I just find this hard to

believe

> > > that hearing loss is such a guessing game with all the modern

> > > technology. Looking for any insight, words of widsom or maybe

> > > someone has or is dealing with similar issues.

> > >

> > > One other problem is that oral and visual has been the main

way of

> > > teaching. The reason is that when we tried sign laugauge at

age 5,

> > > she has problems in her left hadnd with moving her fingers to

make a

> > > lot of the signs. So any other means of teaching ideas, if she

does

> > > become profound would be great. I am aware of the implant and

> > > understand that as much oral now will help if that is a path

we may

> > > have to go done. I know it has been wonderful for so many.

> > >

> > > Thanks and again so long!!!

> > > Colleen

> > >

> >

> >

> >

>

>

>

> --

> Robin Tomlinson

> thetomlinsons@...

>

>

>

[Guest guest]

Hi Colleen,

My daughter has an auto-immune hearing loss and it causes

fluctuations like you are describing. She was deaf in one ear since birth, and

normal in the other until she was seven. At that age she developed a mild loss.

At around the age of 9 she really started to have huge fluctuations. She

could literally have a 60-70 dbl drop overnight. Than it would gradually

improve

again. She just turned 13 and it still occurs. She was actually stable for a

few years in the severe range, than in December dropped again to the lowest

she had ever been, but gradually I believe improved over the spring. My guess

is it may have dropped again a little recently.

Her official diagnosis at this point is Cogan's Syndrome, but I

know that auto-immune inner ear disease can do the same thing. It can be

very frustrating, but as time has gone on we just roll with it - sometimes

better than others depending on how she is hearing at the time.

Cathy

[Guest guest]

Colleen

I dont know anything about the fluctuations but I can try to help

address the communicating. I think you said she just turned 9. Have

her left hand motor skills improved so that she can add sign to

enhance her oral communication? I think the school district should

be adding occupational therapy to help her with her hands.

Are you saying that she is in a total communication class with an

emphasis on signing, but that she has a hard time signing due to

issues with her left hand? (I mostly sign with my right).

Good luck

> >

> > I was written before under the member name as colleenfisher2001,

how

> > it has been some time and was unable to remember my listing. How

> > this doesn't cause any problems. I really loved the group just

time

> > and relocation has caused me to not stay on top of things. I was

> > living in New Orleans and moved to Lafayette prior to the storm

due

> > to my husbands job. My daughter was set to a deaf/hoh school in

the

> > area, however I was told that the hearing issues was not her

problem

> > and that she really didn't need to be there.

> >

> > To make a long story short, I have been having a great deal of

> > trouble with the issues with hoh and the fact that my daughter

seems

> > to be having unusually hearing loss. I was first deaf in the

right

> > ear, left ear find at 3 years old. The questionable earing loss

left

> > ear. Looked at AN through Dr. Berlin and was told that wasn't

the

> > problem. The loss was then called reverse slope hearing loss.

Then

> > it became a mild hearing loss with the 1000-1500hz being in

normal

> > range. This caused people to feel that she had a fluctuating

hearing

> > loss. Now just less than a month ago, right as school was

getting

> > ready to close she has gone from a mild hearing loss to moderate

> > hearing loss. At least a 40db drop in the 1000-1500hz and the

rest

> > drop right along with it. She now at45db-250hz; 50db at 500-

1500hz;

> > 65db at 2000hz; 50db at 3000hz; 55db at 4000hz; 70db at 6000-

8000hz.

> > Speech threshold was at 25db and is now at 50dbs. I feel a

little

> > confused. I have been seeing a pattern about every two to three

> > years. I don't know any one with hearing loss to tell me if this

is

> > a normal pattern. I felt that things would stay steady for a

while

> > before it would change. She just made nine and I have no clue at

> > what is cauing this. I have been told now that it can stay here

for

> > a while, it could go up, it can flucated in this present area or

it

> > could go down. Just a wait and see. I just find this hard to

believe

> > that hearing loss is such a guessing game with all the modern

> > technology. Looking for any insight, words of widsom or maybe

> > someone has or is dealing with similar issues.

> >

> > One other problem is that oral and visual has been the main way

of

> > teaching. The reason is that when we tried sign laugauge at age

5,

> > she has problems in her left hadnd with moving her fingers to

make a

> > lot of the signs. So any other means of teaching ideas, if she

does

> > become profound would be great. I am aware of the implant and

> > understand that as much oral now will help if that is a path we

may

> > have to go done. I know it has been wonderful for so many.

> >

> > Thanks and again so long!!!

> > Colleen

> >

>

[Guest guest]

In a message dated 7/1/2006 11:34:51 A.M. Central Daylight Time,

cllnfisher@... writes:

Will at least I am not crazy. Most people don't seem to understand

this type of hearing loss. Who gave you daughter the official

diagnosis? I still don't have any professional that I feel that

believe that this is what we are dealing with? Thanks for the

insight.

Colleen

Hi Colleen,

Your not crazy at all. The audiograms should speak for

themselves. Is your daughter seeing a pediatric audiologist and a pediatric

ENT.

That would be my first suggestion - make sure you are seeing a good pediatric

audiologist that you feel comfortable with.

As far as the diagnosis- her ent decided to do a prednisone

trial after a large drop in her hearing. I know this is very controversial but

we decided to try it for a week. After a week on prednisone her hearing

started to improve a little. We did a very gradual taper on it and the whole

time

she was on it her hearing slowly improved. Within one month off the

prednisone her hearing dropped again. We were very lucky that she had no side

affects

from the prednisone, but this basically proved the auto-immune thing to her

doctors. As far as the Cogan's syndrome. It is a rare inflammatory disease

that has other things besides the hearing loss that go along with it, some of

which my daughter has. It was actually her eye doctor that suggested the

cogan's because of some of her eye involvement. Right now everything is stable

with her.

Cathy

[Guest guest]

Will at least I am not crazy. Most people don't seem to understand

this type of hearing loss. Who gave you daughter the official

diagnosis? I still don't have any professional that I feel that

believe that this is what we are dealing with? Thanks for the

insight.

Colleen

>

> Hi Colleen,

> My daughter has an auto-immune hearing loss and it

causes

> fluctuations like you are describing. She was deaf in one ear

since birth, and

> normal in the other until she was seven. At that age she

developed a mild loss.

> At around the age of 9 she really started to have huge

fluctuations. She

> could literally have a 60-70 dbl drop overnight. Than it would

gradually improve

> again. She just turned 13 and it still occurs. She was actually

stable for a

> few years in the severe range, than in December dropped again to

the lowest

> she had ever been, but gradually I believe improved over the

spring. My guess

> is it may have dropped again a little recently.

> Her official diagnosis at this point is Cogan's

Syndrome, but I

> know that auto-immune inner ear disease can do the same thing. It

can be

> very frustrating, but as time has gone on we just roll with it -

sometimes

> better than others depending on how she is hearing at the time.

> Cathy

>

>

>

[Guest guest]

Hi ,

Right now she is in a very small regualr school grade pre-k through

8th with less that 200 children in the school. The principle that we

have now has a special ed. degree. She is mainstreamed for all her

classes and pulled out for resources or at any time that she is

having problems. We do finger spelling to help with spelling and

signing when we are having problems at home. Not really used in

classroom expect for finger spelling. She does get OT at school but

finger movement is not that percise in either hand. She takes so

much time trying for example putting her fingers over the other to

make a " r " that she forgets what she was doing. I am really thinking

about trying to start using it more again and get the school to

start it too. They have been willing to do whatever it takes. She

does use an fm system and without that I don't think that she would

be in the regular classrooms at all. She is going to third and is

pulled at for second grade reading. This is a very big issue this

year is to get her to read. At present time only at a first grade

level now for the least three years. I held her back last year.

Colleen

> > >

> > > I was written before under the member name as

colleenfisher2001,

> how

> > > it has been some time and was unable to remember my listing.

How

> > > this doesn't cause any problems. I really loved the group just

> time

> > > and relocation has caused me to not stay on top of things. I

was

> > > living in New Orleans and moved to Lafayette prior to the

storm

> due

> > > to my husbands job. My daughter was set to a deaf/hoh school

in

> the

> > > area, however I was told that the hearing issues was not her

> problem

> > > and that she really didn't need to be there.

> > >

> > > To make a long story short, I have been having a great deal of

> > > trouble with the issues with hoh and the fact that my daughter

> seems

> > > to be having unusually hearing loss. I was first deaf in the

> right

> > > ear, left ear find at 3 years old. The questionable earing

loss

> left

> > > ear. Looked at AN through Dr. Berlin and was told that wasn't

> the

> > > problem. The loss was then called reverse slope hearing loss.

> Then

> > > it became a mild hearing loss with the 1000-1500hz being in

> normal

> > > range. This caused people to feel that she had a fluctuating

> hearing

> > > loss. Now just less than a month ago, right as school was

> getting

> > > ready to close she has gone from a mild hearing loss to

moderate

> > > hearing loss. At least a 40db drop in the 1000-1500hz and the

> rest

> > > drop right along with it. She now at45db-250hz; 50db at 500-

> 1500hz;

> > > 65db at 2000hz; 50db at 3000hz; 55db at 4000hz; 70db at 6000-

> 8000hz.

> > > Speech threshold was at 25db and is now at 50dbs. I feel a

> little

> > > confused. I have been seeing a pattern about every two to

three

> > > years. I don't know any one with hearing loss to tell me if

this

> is

> > > a normal pattern. I felt that things would stay steady for a

> while

> > > before it would change. She just made nine and I have no clue

at

> > > what is cauing this. I have been told now that it can stay

here

> for

> > > a while, it could go up, it can flucated in this present area

or

> it

> > > could go down. Just a wait and see. I just find this hard to

> believe

> > > that hearing loss is such a guessing game with all the modern

> > > technology. Looking for any insight, words of widsom or maybe

> > > someone has or is dealing with similar issues.

> > >

> > > One other problem is that oral and visual has been the main

way

> of

> > > teaching. The reason is that when we tried sign laugauge at

age

> 5,

> > > she has problems in her left hadnd with moving her fingers to

> make a

> > > lot of the signs. So any other means of teaching ideas, if she

> does

> > > become profound would be great. I am aware of the implant and

> > > understand that as much oral now will help if that is a path

we

> may

> > > have to go done. I know it has been wonderful for so many.

> > >

> > > Thanks and again so long!!!

> > > Colleen

> > >

> >

>

[Guest guest]

I work for a non-profit (the Let Them Hear Foundation) associated with a

major otology clinic (the California Ear Institute). I think only half or

so of our pediatric patients have the source of their hearing loss

conclusively identified. Those are typically the patients who test positive

for Connexin , EVAS, Mondini's, Pendred's, Usher's, CMV, meningitis,

Perilymphatic Fistula, lost their hearing immediately after ototoxic drug

exposure, etc., where there is either a blood test or a 100 % accurate

method to diagnose the source of the hearing loss.

We treat numerous patients with atresia and microtia, and in those cases, we

know that the atresia and microtia are the direct cause the hearing loss,

but we frequently don't know what caused the atresia/microtia. We also

treat a number of children who were extremely premature in the same

situation. If nothing shows up in the genetic or imaging screens, it's hard

to say exactly what caused their hearing impairment. Therefore, I am

including those in the " unknown " category.

Sometimes syndromes or causes are strongly suspected (i.e. we SUSPECT my

daughter has BOR syndrome because of family history, type of hearing loss,

and she has all the classic BOR syndrome symptoms) but the genetic testing

for this syndrome is not very accurate yet, so we don't know for sure.

Hope this helps.

Sheri

[Guest guest]

We're pretty sure that our boys' hearing loss is an x-linked recessive

hearing loss since other males in my family (my brother, nephew

[sister's son] and uncle [mother's brother]) all have some sort of

hearing loss. It was explained with other reasons - our family owns

lumber yards for example - until both my boys showed up with their

hearing losses. We're in a genetics study but so far they haven't

identified the gene responsible.

Sheri - an unrelated question - can you send me the URL for Let Them

Hear's class action lawsuit? I lost the link...

Thanks

Barbara

Sheri Byrne wrote:

> I work for a non-profit (the Let Them Hear Foundation) associated with a

> major otology clinic (the California Ear Institute). I think only half or

> so of our pediatric patients have the source of their hearing loss

> conclusively identified. Those are typically the patients who test positive

> for Connexin , EVAS, Mondini's, Pendred's, Usher's, CMV, meningitis,

> Perilymphatic Fistula, lost their hearing immediately after ototoxic drug

> exposure, etc., where there is either a blood test or a 100 % accurate

> method to diagnose the source of the hearing loss.

>

> We treat numerous patients with atresia and microtia, and in those cases, we

> know that the atresia and microtia are the direct cause the hearing loss,

> but we frequently don't know what caused the atresia/microtia. We also

> treat a number of children who were extremely premature in the same

> situation. If nothing shows up in the genetic or imaging screens, it's hard

> to say exactly what caused their hearing impairment. Therefore, I am

> including those in the " unknown " category.

>

> Sometimes syndromes or causes are strongly suspected (i.e. we SUSPECT my

> daughter has BOR syndrome because of family history, type of hearing loss,

> and she has all the classic BOR syndrome symptoms) but the genetic testing

> for this syndrome is not very accurate yet, so we don't know for sure.

>

> Hope this helps.

>

> Sheri

>

>

>

>

>

> All messages posted to this list are private and confidential. Each post is

the intellectual property of the author and therefore subject to copyright

restrictions.

>

[Guest guest]

In a message dated 6/30/2006 9:54:34 P.M. Central Standard Time,

cllnfisher@... writes:

.. My sister's daughter was sick for three weeks

with high fevers on and off and found out that she has Q & T

syndrome which has hearing loss associated with it and can run in

the family and found out that this is what ENT was looking for in

the EKG and Jessie was find.

Coleen,

Can you tell me more about this syndrome? I tried to google it and couldn't

find anything.