Re: cause of hearing loss

[Guest guest]

I think I am past that as well. The doctors dont seem to have an answer for me

as to why the hearing was lost. I simply want to get it back for him and or make

it as easy as possible for him to adjust! That is the most important thing in

the world to me. I dont want to look for the cause at all I want to find a

solution!

JillcWood@... wrote: In a message dated 12/14/2005 1:06:08 P.M. Eastern

Standard Time,

abaugh7080@... writes:

.... but i really, truly dont care to find out what caused it, it can remain

one of life's great mysteries for all i care. i just want to be sure to find

out if it is genetic. i think the kids should know. my question i guess is

that can dr's really determine what caused the loss? how often is it really

genetic? and since we're doing what we can now, we cant change it, what is the

point of finding out? (other than if it is genetic, of course)

amanda

Sometimes the reason for knowing the " why " is to be able to predict the

future of the loss. Depending on that information, your decisions may change.

Sometimes it's so you can alert your kid to the fact that they can pass it on.

But the here-and-now decisions like hearing aids, FMs, TODs and stuff like

that really wouldn't change for us. It's the long term stuff that does.

For instance, our game plan for our son is based on the fact that he has a

progressive loss and may be deaf by the time he is an adult. If we were

working under the assumption that his loss would never get much worse than it

is,

then our decisions might be different. Knowing that Ian's loss is progressive,

we wanted to have him able to communicate even if he is completely deaf. I

pushed until I found a sign teacher because I know that a CI isn't a miracle

cure for all kids and out Ian may never become a candidate. One set of docs

says a CI is a possibility, one says it isn't. But what they both say is that

he very likely will become profoundly deaf. So we use that info to set our

long-range goals

We did not do the blood tests for a Connexin related loss because basically

I goofed. The blood work needed to be done at Montefiore (hospital in NYC). It

turned out I gave the tech the other 'scripts and not that one. I thought it

was done, but it never was. And we haven't been back there in a while. That

said, I'm not really that driven to have that test done since one set of

doctors says it's not needed and one says it is. I'm not going to run all over

the place for something that really doesn't matter right now. I'll have that

testing done when it's convenient for us. And the only reason I'll have it done

is so that Ian will know if he could possibly pass the gene onto his own

kids. Since grand-kids are not on our short-term plan, the testing isn't high

on

my to-do list.

However, given Ian's other issues, I wanted to know if there was a genetic

syndrome at play. When he was about 10 and I heard from a friend that puberty

can be quite the experience for some syndromes. Her son has one and the

hormones+syndrome made things very hard for that boy. I wanted to know what,

if

anything, was coming my way.

So, I went to a geneticist. He took a complete and very detailed family

history and a very detailed medical history for Ian. He diagnosed a syndrome

that

is not genetic. So, I now have a clue about the " why " and some idea of

what's coming for him.

Now after saying all that, you are at the beginning of this process. That

alone is traumatic and chaotic enough. I didn't go looking for an answer to the

genetic question until we were done with all the other stuff. Ian was aided,

I had fought the district for appropriate services ... I could use the word

" deaf " confidently in a sentence without choking back tears. It was only at

that point that I was emotionally ready to deal with whatever the geneticist

had to tell me. Before then, I think it would have been the straw that broke

me. Honestly, there were times when I felt like I was hanging on by a very thin

thread. Counseling helped, support of my best friend helped ... and after a

while I got accustomed to my new reality. Only then could I handle any more.

You do what you feel you can handle. Take it one step at a time. If the

genetic answer will help you with decision-making now, then I'd do it. But if

not, you can wait until you feel you are ready. I say that we'll get Ian tested

when he's in college, when marriage and family are not a distant blip on his

horizon.

Best -- Jill

[Guest guest]

Can I make a confession? I have no clue what Hannah was tested for!!! And there

has not been any testing on - I guess since his loss is still unknown?

How do I find out what Hannah was tested for? I know she had blood work done

that came out negative but I think all they were testing was for diabetes and

other illnesses like that. She was suppose to have an MRI done to test for

whatever the disease is that cause a physical abnormality (where if she gets hit

in the head then she can lose all of her hearing?) but with the

hurricane.......well nothing has been done yet! And we declined the genetic

testing. Honestly, I was too scared about what I would find out. I didn't want

to know about " other " things that might show up. Besides with two kids with a

hearing loss its pretty certain that it is genetic. But then I hear about what

others are doing and I feel like I haven't done enough...........

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

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[Guest guest]

Sara, I was like you and for some reason I objected to the CAT scan which shows

the bone structure of the ear and cochlea. I did all the other stuff when the

doctor ordered it, but sat on the CAT scan for months. We did the genetic

testing about 6 years after diagnosis, so you can always change your mind and

get that done. And we did not have Connexin 26 or Connexin 30 so we are still a

family who has no idea where the hearing loss came from. We're glad we know,

because even though we are done with having kids, our oldest daughter is 17

years older than the one with hearing loss. We wanted to know for Maggie,

because conn 26 tends to be progressive and for our oldest who is

marrying/having babies age. I'm from FLorida and I know how the world changed

in Ft. Lauderdale after a hurricane with lots less damage than you went

through. You should be commended for getting up and dressed every morning after

your city was demolished! in GA

Re: cause of hearing loss

Can I make a confession? I have no clue what Hannah was tested for!!! And there

has not been any testing on - I guess since his loss is still unknown?

How do I find out what Hannah was tested for? I know she had blood work done

that came out negative but I think all they were testing was for diabetes and

other illnesses like that. She was suppose to have an MRI done to test for

whatever the disease is that cause a physical abnormality (where if she gets hit

in the head then she can lose all of her hearing?) but with the

hurricane.......well nothing has been done yet! And we declined the genetic

testing. Honestly, I was too scared about what I would find out. I didn't want

to know about " other " things that might show up. Besides with two kids with a

hearing loss its pretty certain that it is genetic. But then I hear about what

others are doing and I feel like I haven't done enough...........

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

Yahoo! Shopping

Find Great Deals on Holiday Gifts at Yahoo! Shopping

[Guest guest]

thanks i check into it, i figured we would only need to know, just so we can let

the kids know for their own family history. i'll definately check out that link.

amanda

dawkdd@... wrote:

,

The good thing about hearing loss is that you don't need to know the cause to

take action on getting heairng aids or choosing a communication method. In our

area, it is common practice for newly diagnosed children to have a genetic

screening for the known genetic mutations that cause hearing loss, a CT scan to

make sure the cochlea are formed properly, a renal ultrasound to ensure the

kidneys are working well (because the kidneys form at the same time as the

cochlea in a fetus), and an eye exam to identify any vision problems. Also, a

full medical history is given, including information about the

pregnancy/labor/delivery and any complications, as these can contribute to

hearing loss.

We did the genetic screening (blood from child and both parents) as I had no

complications during pregnancy and we have no known family history of hearing

loss. It turns out that Hadley's loss is due to Connexin 26; both my husband

and I are carriers and gave Hadley each of our recessive genes for Cx26. I am

glad that we know the cause because we can read up about all the latest research

on Cx26. We have used this information to argue for educational services for

Hadley, be more proactive about hearing evaluations, participating in research

studies to further the knowledge about Cx26, and be better prepared for the

future. Also, since Hadley is our first child, this enabled us to make some

decisions about future children (as there is a 25% we will have another child

with a hearing loss). We've also been able to share this information with our

siblings so that they can decide whether to have themselves tested to know if

they carry the same Cx26 gene.

If the genetic tests had come back negative, it would not have changed any of

the decisions we have made for Hadley. However, knowing the cause has helped us

see the big picture and make more informed choices. And, as I mentioned above,

it was instrumental in arguing for services from our local school district.

Harvard's Center for Hereditary Deafness has a great booklet that you can

download for more information about genetic testing, the known genetic causes of

deafness/hearing loss, and other basic information.

http://hearing.harvard.edu/index.htm

Kerry

-------------- Original message --------------

> when we went to the ENT he brought up determining the cause of the

> hearing loss. he asked for basic family history, (we have no known

> family history of SN hearing loss) nothing exceptional, about like any

> other new dr asking for family history. my boyfriend got upset because

> i told the ENT that at this point i didnt care what caused it, i didnt

> want to focus on that, that my main concern at the moment was getting

> her hearing aids. he thinks that we should find out soon what caused

> it. i told him that i only want to know if its genetic, simply so we

> can see if the kids are carriers. so they will know if they can pass

> the gene to their kids. he (my boyfriend) thinks we should find out the

> cause if we can, he says i'm just being emotional, (which seems to be

> his excuse for everything these days) but i really, truly dont care to

> find out what caused it, it can remain one of life's great mysteries

> for all i care. i just want to be sure to find out if it is genetic. i

> think the kids should know.

> my question i guess is that can dr's really determine what caused the

> loss? how often is it really genetic? and since we're doing what we can

> now, we cant change it, what is the point of finding out? (other than

> if it is genetic, of course)

> amanda

>

>

>

>

>

>

> 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]

thanks so much, i feel like i'm making the right decision to not push the

testing at the moment. it just feels like such a fight because her dad is

pushing it so much. hopefully we'll be able to communicate about this bettter

when we start the local support group here in town. if not we'll try like a

couples therapy, the hearing loss itself is enough, and these issues in our

family isnt helping. we have to do something.

thanks

amanda

JillcWood@... wrote:

In a message dated 12/14/2005 1:06:08 P.M. Eastern Standard Time,

abaugh7080@... writes:

.... but i really, truly dont care to find out what caused it, it can remain

one of life's great mysteries for all i care. i just want to be sure to find

out if it is genetic. i think the kids should know. my question i guess is

that can dr's really determine what caused the loss? how often is it really

genetic? and since we're doing what we can now, we cant change it, what is the

point of finding out? (other than if it is genetic, of course)

amanda

Sometimes the reason for knowing the " why " is to be able to predict the

future of the loss. Depending on that information, your decisions may change.

Sometimes it's so you can alert your kid to the fact that they can pass it on.

But the here-and-now decisions like hearing aids, FMs, TODs and stuff like

that really wouldn't change for us. It's the long term stuff that does.

For instance, our game plan for our son is based on the fact that he has a

progressive loss and may be deaf by the time he is an adult. If we were

working under the assumption that his loss would never get much worse than it

is,

then our decisions might be different. Knowing that Ian's loss is progressive,

we wanted to have him able to communicate even if he is completely deaf. I

pushed until I found a sign teacher because I know that a CI isn't a miracle

cure for all kids and out Ian may never become a candidate. One set of docs

says a CI is a possibility, one says it isn't. But what they both say is that

he very likely will become profoundly deaf. So we use that info to set our

long-range goals

We did not do the blood tests for a Connexin related loss because basically

I goofed. The blood work needed to be done at Montefiore (hospital in NYC). It

turned out I gave the tech the other 'scripts and not that one. I thought it

was done, but it never was. And we haven't been back there in a while. That

said, I'm not really that driven to have that test done since one set of

doctors says it's not needed and one says it is. I'm not going to run all over

the place for something that really doesn't matter right now. I'll have that

testing done when it's convenient for us. And the only reason I'll have it done

is so that Ian will know if he could possibly pass the gene onto his own

kids. Since grand-kids are not on our short-term plan, the testing isn't high

on

my to-do list.

However, given Ian's other issues, I wanted to know if there was a genetic

syndrome at play. When he was about 10 and I heard from a friend that puberty

can be quite the experience for some syndromes. Her son has one and the

hormones+syndrome made things very hard for that boy. I wanted to know what,

if

anything, was coming my way.

So, I went to a geneticist. He took a complete and very detailed family

history and a very detailed medical history for Ian. He diagnosed a syndrome

that

is not genetic. So, I now have a clue about the " why " and some idea of

what's coming for him.

Now after saying all that, you are at the beginning of this process. That

alone is traumatic and chaotic enough. I didn't go looking for an answer to the

genetic question until we were done with all the other stuff. Ian was aided,

I had fought the district for appropriate services ... I could use the word

" deaf " confidently in a sentence without choking back tears. It was only at

that point that I was emotionally ready to deal with whatever the geneticist

had to tell me. Before then, I think it would have been the straw that broke

me. Honestly, there were times when I felt like I was hanging on by a very thin

thread. Counseling helped, support of my best friend helped ... and after a

while I got accustomed to my new reality. Only then could I handle any more.

You do what you feel you can handle. Take it one step at a time. If the

genetic answer will help you with decision-making now, then I'd do it. But if

not, you can wait until you feel you are ready. I say that we'll get Ian tested

when he's in college, when marriage and family are not a distant blip on his

horizon.

Best -- Jill

[Guest guest]

In a message dated 12/15/2005 5:26:43 P.M. Eastern Standard Time,

abaugh7080@... writes:

if not we'll try like a couples therapy, the hearing loss itself is enough,

and these issues in our family isnt helping. we have to do something.

,

Been there, done that and there is absolutely nothing wrong with some

counseling. The stress on each of you right now is big. Everyone copes, grieves

and

adapts differently. And sometimes we need help as a couple to work together

as one. Sometimes we need outside help to let us see and understand things

from each other's vantage point. We did.

My husband was not thrilled, his family's approach is that therapy is like

airing your dirty laundry in public. But we needed it. We needed something to

help us as a couple or we weren't going to make it. Don't be afraid to get

the help you need. It's just as valid to get the support you need for

yourselves as it is to seek it out for your child.

Best -- Jill

[Guest guest]

In a message dated 12/15/2005 5:26:43 P.M. Eastern Standard Time,

abaugh7080@... writes:

if not we'll try like a couples therapy, the hearing loss itself is enough,

and these issues in our family isnt helping. we have to do something.

,

Been there, done that and there is absolutely nothing wrong with some

counseling. The stress on each of you right now is big. Everyone copes, grieves

and

adapts differently. And sometimes we need help as a couple to work together

as one. Sometimes we need outside help to let us see and understand things

from each other's vantage point. We did.

My husband was not thrilled, his family's approach is that therapy is like

airing your dirty laundry in public. But we needed it. We needed something to

help us as a couple or we weren't going to make it. Don't be afraid to get

the help you need. It's just as valid to get the support you need for

yourselves as it is to seek it out for your child.

Best -- Jill

[Guest guest]

In a message dated 12/15/2005 5:26:43 P.M. Eastern Standard Time,

abaugh7080@... writes:

if not we'll try like a couples therapy, the hearing loss itself is enough,

and these issues in our family isnt helping. we have to do something.

,

Been there, done that and there is absolutely nothing wrong with some

counseling. The stress on each of you right now is big. Everyone copes, grieves

and

adapts differently. And sometimes we need help as a couple to work together

as one. Sometimes we need outside help to let us see and understand things

from each other's vantage point. We did.

My husband was not thrilled, his family's approach is that therapy is like

airing your dirty laundry in public. But we needed it. We needed something to

help us as a couple or we weren't going to make it. Don't be afraid to get

the help you need. It's just as valid to get the support you need for

yourselves as it is to seek it out for your child.

Best -- Jill

[Guest guest]

>

> thanks so much, i feel like i'm making the right decision to not push the

testing at the

moment. it just feels like such a fight because her dad is pushing it so much.

hopefully

we'll be able to communicate about this bettter when we start the local support

group here

in town. if not we'll try like a couples therapy, the hearing loss itself is

enough, and these

issues in our family isnt helping. we have to do something.

> thanks

> amanda

>

,

There are some compelling medical reasons to determine the cause of hearing

loss.

Genetics is one of them. For us, an LVAS diagnosis made a huge, huge difference

in how

we approach our daughter's hearing loss. Before the cause of her loss was

determined, we

thought we had a hard of hearing kid. We learned some signs but weren't serious

about it.

We moved to an area where she could receive some services. The weekend before

the

move, we learned the loss was progressive, and that her activities needed to be

restricted.

Genetics and balance issues are also part of the equation. It explained a lot.

Had we known

earlier, we probably would have made different decisions - moving to a place

where there

was a bigger deaf population and even more services, or becoming fluent in sign

from the

beginning (well, I still haven't made that much progress there - I think I'm too

oral). In

trying to tell us our daughter's moderate to severe loss wasn't too bad, the

early doctors

gave us the impression we did not have to change the way we lived. We did.

One caution: Many LVAS cases are missed because the radiologists and ENTs

reading the

scans don't know what to look for. Make sure you're seeing an otologist or

neurotologist.

I'm sorry to come across as pushing something you don't want to do right now.

Before this

diagnosis, I felt the same way. I didn't really care, even if the doctors did.

But this news

came as another huge shock and I wished I'd been prepared for it. I guess we're

never

prepared. Arming yourself with information can't hurt, however.

Janet

[Guest guest]

>

> thanks so much, i feel like i'm making the right decision to not push the

testing at the

moment. it just feels like such a fight because her dad is pushing it so much.

hopefully

we'll be able to communicate about this bettter when we start the local support

group here

in town. if not we'll try like a couples therapy, the hearing loss itself is

enough, and these

issues in our family isnt helping. we have to do something.

> thanks

> amanda

>

,

There are some compelling medical reasons to determine the cause of hearing

loss.

Genetics is one of them. For us, an LVAS diagnosis made a huge, huge difference

in how

we approach our daughter's hearing loss. Before the cause of her loss was

determined, we

thought we had a hard of hearing kid. We learned some signs but weren't serious

about it.

We moved to an area where she could receive some services. The weekend before

the

move, we learned the loss was progressive, and that her activities needed to be

restricted.

Genetics and balance issues are also part of the equation. It explained a lot.

Had we known

earlier, we probably would have made different decisions - moving to a place

where there

was a bigger deaf population and even more services, or becoming fluent in sign

from the

beginning (well, I still haven't made that much progress there - I think I'm too

oral). In

trying to tell us our daughter's moderate to severe loss wasn't too bad, the

early doctors

gave us the impression we did not have to change the way we lived. We did.

One caution: Many LVAS cases are missed because the radiologists and ENTs

reading the

scans don't know what to look for. Make sure you're seeing an otologist or

neurotologist.

I'm sorry to come across as pushing something you don't want to do right now.

Before this

diagnosis, I felt the same way. I didn't really care, even if the doctors did.

But this news

came as another huge shock and I wished I'd been prepared for it. I guess we're

never

prepared. Arming yourself with information can't hurt, however.

Janet

[Guest guest]

>

> thanks so much, i feel like i'm making the right decision to not push the

testing at the

moment. it just feels like such a fight because her dad is pushing it so much.

hopefully

we'll be able to communicate about this bettter when we start the local support

group here

in town. if not we'll try like a couples therapy, the hearing loss itself is

enough, and these

issues in our family isnt helping. we have to do something.

> thanks

> amanda

>

,

There are some compelling medical reasons to determine the cause of hearing

loss.

Genetics is one of them. For us, an LVAS diagnosis made a huge, huge difference

in how

we approach our daughter's hearing loss. Before the cause of her loss was

determined, we

thought we had a hard of hearing kid. We learned some signs but weren't serious

about it.

We moved to an area where she could receive some services. The weekend before

the

move, we learned the loss was progressive, and that her activities needed to be

restricted.

Genetics and balance issues are also part of the equation. It explained a lot.

Had we known

earlier, we probably would have made different decisions - moving to a place

where there

was a bigger deaf population and even more services, or becoming fluent in sign

from the

beginning (well, I still haven't made that much progress there - I think I'm too

oral). In

trying to tell us our daughter's moderate to severe loss wasn't too bad, the

early doctors

gave us the impression we did not have to change the way we lived. We did.

One caution: Many LVAS cases are missed because the radiologists and ENTs

reading the

scans don't know what to look for. Make sure you're seeing an otologist or

neurotologist.

I'm sorry to come across as pushing something you don't want to do right now.

Before this

diagnosis, I felt the same way. I didn't really care, even if the doctors did.

But this news

came as another huge shock and I wished I'd been prepared for it. I guess we're

never

prepared. Arming yourself with information can't hurt, however.

Janet

[Guest guest]

I have to agree with Janet. Our boys both have cochlear

malformations (Mondini dysplasi) and LVAS (or maybe it was called

EVAS?, I can't remember). Both of these we later found out were

because they have Pendred Syndrome, discovered through genetic

testing.

BUT, here's the important part. Janet is so right in saying make

sure the CT scan and/or MRI are done with the right orientation,

resolution, and read by folks who know what they're looking for in

the inner ear. Tommy's first CT scan and MRI were both done at a

military hospital, at too low of a resolution for the CI doctor AND

misread, had to be redone. Very frustrating, but we worked through

it.

--Karin, mom to (CII 11/01), and Tommy (90K 5/04)

www.bioncboys.blogspot.com

BEA Volunteer

> One caution: Many LVAS cases are missed because the radiologists

and ENTs reading the

> scans don't know what to look for. Make sure you're seeing an

otologist or neurotologist.

[Guest guest]

i'll definately ask about it when we go to the ENT, my daughters still so young,

that if she did have other problems, visionary, renal, and if it may be

progressive, we wouldnt be able to tell yet, (most likely) shes only 12 weeks

old. i thought it was like a one shot thing, i didnt realize that there were

other problems that can come with the loss, primarily just because i am so

caught up in the loss itself. thanks for the great info guys.

amanda

janetlizard wrote:

>

> thanks so much, i feel like i'm making the right decision to not push the

testing at the

moment. it just feels like such a fight because her dad is pushing it so much.

hopefully

we'll be able to communicate about this bettter when we start the local support

group here

in town. if not we'll try like a couples therapy, the hearing loss itself is

enough, and these

issues in our family isnt helping. we have to do something.

> thanks

> amanda

>

,

There are some compelling medical reasons to determine the cause of hearing

loss.

Genetics is one of them. For us, an LVAS diagnosis made a huge, huge difference

in how

we approach our daughter's hearing loss. Before the cause of her loss was

determined, we

thought we had a hard of hearing kid. We learned some signs but weren't serious

about it.

We moved to an area where she could receive some services. The weekend before

the

move, we learned the loss was progressive, and that her activities needed to be

restricted.

Genetics and balance issues are also part of the equation. It explained a lot.

Had we known

earlier, we probably would have made different decisions - moving to a place

where there

was a bigger deaf population and even more services, or becoming fluent in sign

from the

beginning (well, I still haven't made that much progress there - I think I'm too

oral). In

trying to tell us our daughter's moderate to severe loss wasn't too bad, the

early doctors

gave us the impression we did not have to change the way we lived. We did.

One caution: Many LVAS cases are missed because the radiologists and ENTs

reading the

scans don't know what to look for. Make sure you're seeing an otologist or

neurotologist.

I'm sorry to come across as pushing something you don't want to do right now.

Before this

diagnosis, I felt the same way. I didn't really care, even if the doctors did.

But this news

came as another huge shock and I wished I'd been prepared for it. I guess we're

never

prepared. Arming yourself with information can't hurt, however.

Janet

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]

I don't know if this is helpful or not but I did not treat my daughter's

hearing loss as an isolated thing until we had run the full gamut of tests

and determined it was.

Somehow that was comforting to me. We did the full range of vision,

genetics, CT, MRI all of that in about a weeks time. 2 weeks later, we had

the full results of the testing - that she had no other associated

syndromes, just hearing loss. To me that was a huge relief. Even if we

would have found something else, I wanted to know sooner than later. Her

ENT was great about doing her CT, MRI and ABR all at the same time. We did 2

ABR's because her first one was done incorrectly - long back story I am sure

everyone has heard me talk about a few too many times .

Anyway. You have to do what feels best for you as a parent. Whatever gives

you piece of mind is the course of action you should take. After having

Allie misdiagnosed for so long. It was worth it to get the extra testing

done, so I had some piece of mind. So I could stop wondering about what

might come up later.

Just try to be gentle with yourself. It is a slippery road to go down and we

all end up making a few choices we wish we could change. Sometimes there

really isn't a right or wrong choice about anything just what feels right

for our hearts.

Best of luck to you,

Angie in Ks

Allie 4 yrs

Bilateral N24 12mo, 30 mo

>

> i'll definately ask about it when we go to the ENT, my daughters still so

> young, that if she did have other problems, visionary, renal, and if it may

> be progressive, we wouldnt be able to tell yet, (most likely) shes only 12

> weeks old. i thought it was like a one shot thing, i didnt realize that

> there were other problems that can come with the loss, primarily just

> because i am so caught up in the loss itself. thanks for the great info

> guys.

> amanda

>

> janetlizard wrote:

>

> >

> > thanks so much, i feel like i'm making the right decision to not push

> the testing at the

> moment. it just feels like such a fight because her dad is pushing it so

> much. hopefully

> we'll be able to communicate about this bettter when we start the local

> support group here

> in town. if not we'll try like a couples therapy, the hearing loss itself

> is enough, and these

> issues in our family isnt helping. we have to do something.

> > thanks

> > amanda

> >

>

> ,

>

> There are some compelling medical reasons to determine the cause of

> hearing loss.

> Genetics is one of them. For us, an LVAS diagnosis made a huge, huge

> difference in how

> we approach our daughter's hearing loss. Before the cause of her loss was

> determined, we

> thought we had a hard of hearing kid. We learned some signs but weren't

> serious about it.

> We moved to an area where she could receive some services. The weekend

> before the

> move, we learned the loss was progressive, and that her activities needed

> to be restricted.

> Genetics and balance issues are also part of the equation. It explained a

> lot. Had we known

> earlier, we probably would have made different decisions - moving to a

> place where there

> was a bigger deaf population and even more services, or becoming fluent in

> sign from the

> beginning (well, I still haven't made that much progress there - I think

> I'm too oral). In

> trying to tell us our daughter's moderate to severe loss wasn't too bad,

> the early doctors

> gave us the impression we did not have to change the way we lived. We did.

>

> One caution: Many LVAS cases are missed because the radiologists and ENTs

> reading the

> scans don't know what to look for. Make sure you're seeing an otologist or

> neurotologist.

>

> I'm sorry to come across as pushing something you don't want to do right

> now. Before this

> diagnosis, I felt the same way. I didn't really care, even if the doctors

> did. But this news

> came as another huge shock and I wished I'd been prepared for it. I guess

> we're never

> prepared. Arming yourself with information can't hurt, however.

>

> Janet

>

>

>

>

>

>

>

>

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>