Re: Introduction (I'm new)

[Guest guest]

Hi everyone,

> My name is Sara and I'm new here.......I spoke with someone about

> possible cochlear implants, and she said it sounded like Tessa could be a

> candidate, but we still aren't sure about that yet.

I would say that if she is profoundly deaf in the one ear she is a

candidate. Depending on the guidelines of the implant center they are

implanting kids with a 80 and above dcbl hearing loss(some don't start to

think about this until they reach the 90 dcbl loss level). My daughter is 2

and just had bilateral cochlear implants put in and had hookup on 3/25/04.

She is doing so awesome but usually you will need to give hearing aids a

trial first before they consider you for an implant.

Anyone know how to deal with insurance?...........They told me that had it

> been the result of an accident, they would pay for them, but they won't

> because she was born this way.

I find that very interesting because now in the state of MN it is just the

opposite. They now will cover the cost of hearing aids if the child has a

congenital hearing loss but if it is an acquired loss they do not cover

this. I only know this because Annika has a hearing loss because she had

bacterial meningitis when she was a baby and that is where her hearing loss

came from so we had to find other resources to get her hearing aids from. I

know that a big contributor to hearing loss is the Lions club and they have

monies or even some places have loaner hearing aids to help families be able

to afford to get their child hearing aids. We also were able to get Annika

on Medical Assistance because of her disability and so that is how we paid

for her hearing aids. I know that if you discuss this with your audiologist

or ENT they should be able to give you information on what is available in

your area for covering the hearing aids.

Insurance companies are always a very frustrating part of this journey. I

think sometimes they think that their job in our lives is to create more

obstacles and more hassles than really needed but of course that is not fair

to say. My current ENT and audiologist have been a great help to us in

working with the insurance companies(she has both the private insurance and

then the medical assistance backup) and getting approvals for things for us.

So depending on your office they can be a great help or maybe not.

I want to let you know that I am sorry that you have had to go through all

of this. Losing a child and then dealing with a hearing loss that should

have been diagnosed early. What a process you have been through. But I will

just say that I think you have come to the right place because I have gotten

lots of help through this group in my journey.

If you ever need to contact me privately please let me know. I am willing

to help in anyway possible.

Mom of 4

Marcus 13

12

Jon 10

Annika 2

Bilateral Clarion implant 3/1/04

Hookup 3/25/04

[Guest guest]

Welcome to the group Sara,

My condolences for your loss of your baby, as well as your precious little

girl's hearing loss. You have been through a lot, and deserve to grieve for

both of them.

This is an incredible group with lots of experience and support. So feel free

to ask questions and express your concerns.

I have a 6 year old daughter that was diagnosed at 2 1/2 years old, although, I

believe she too was born with hearing impairment. I had 2 hospitals disagreeing

for 2 years on her hearing, even though she has a severe loss in both ears.

It is hard to say about cochlear implant candidacy, seems that each ENT has

different levels. All I can say, is get a second opinion if your heart tells

you too.

Most of us have had battles with insurance companies. The first one we had when

my daugther was diagnosed was a company sponsered small insurance company, and

even though they denied us, we appealed, had the ENT write a letter and they

ended up picking up most of the cost. Since then we've had 2 different

companies, which are big well known companies, both PPOs, and we haven't won any

battles with them. (we just bought a personal FM system, because our daughter

goes to a private school, so the school system wouldn't provide it)

Best of luck to you and your family, and be sure to go through the listen up web

site, there is a lot of great information on there. There are also several good

books that may help you. One I can think of off the top of my head is " Choices

in Deafness " , S. Schwartz

Robin

Brittney, 6, SNL

3, hearing

[Guest guest]

Welcome to the group Sara,

My condolences for your loss of your baby, as well as your precious little

girl's hearing loss. You have been through a lot, and deserve to grieve for

both of them.

This is an incredible group with lots of experience and support. So feel free

to ask questions and express your concerns.

I have a 6 year old daughter that was diagnosed at 2 1/2 years old, although, I

believe she too was born with hearing impairment. I had 2 hospitals disagreeing

for 2 years on her hearing, even though she has a severe loss in both ears.

It is hard to say about cochlear implant candidacy, seems that each ENT has

different levels. All I can say, is get a second opinion if your heart tells

you too.

Most of us have had battles with insurance companies. The first one we had when

my daugther was diagnosed was a company sponsered small insurance company, and

even though they denied us, we appealed, had the ENT write a letter and they

ended up picking up most of the cost. Since then we've had 2 different

companies, which are big well known companies, both PPOs, and we haven't won any

battles with them. (we just bought a personal FM system, because our daughter

goes to a private school, so the school system wouldn't provide it)

Best of luck to you and your family, and be sure to go through the listen up web

site, there is a lot of great information on there. There are also several good

books that may help you. One I can think of off the top of my head is " Choices

in Deafness " , S. Schwartz

Robin

Brittney, 6, SNL

3, hearing

[Guest guest]

<<I gave them the name of a dr. who does cochlear implants in our area, but

they don't

cover her, so I asked if they could give me a dr who they do cover, but they

couldn't. They asked the specialty. I said Audiology so they offered to

give the names of audiologists.>>

Hi Sara,

I know you must be feeling somewhat overwhelmed by all that's going on right now

but you're certainly doing the right thing by seeking out as much info as you

can. I don't think any one of us has any special secret weapons for dealing

with the insurance companies and yes, the fact that they don't cover aids is

ridiculous and appalling. What I have seen with most of the big companies is

that they DO tend to cover CI's if they cover hearing loss at all. The fact

that your company didn't say no outright tells me that, if Tessa (love that

name!) qualifies, it's probably covered. Qualification is certainly varied

depending on area or company but I know that the guidelines have changed

recently and children do not necessarily have to have profound loss on both

sides before they can be implanted.

I thought I'd mention that you would be dealing with an ENT or other doctor who

specializes in ear, nose, throat, etc. surgeries and not an audiologist to

actually have a CI prescribed. The audiologist is the person who determines the

level of loss and would work closely with the physician...but this may explain

why some of the audiology clinics you were referred to by your insurance company

said they don't " do " CI's. There is probably some crossover of specialties out

there but in my area of Washington state, the audi would always refer someone to

the ENT for any surgical options. The audi WOULD prescribe and fit hearing aids

and many of them are extremely knowledgeable about other aspects of hearing

loss, particularly language development.

A book I would recommend as a starting point for making decisions is Choices in

Deafness by Sue Schwarz. This is an overview of the communication options out

there for kids with hearing loss. It doesn't take sides in any debate about

which is best...just presents each method as fairly as the author felt she

could. It's not perfect, but it will give you a place to begin. I know you've

been referred back to the Listen-up.org site and I would also HIGHLY recommend

browsing there. I truly think that Kay has found a link to help answer any

question!

Carol - mom to , 7.11, mod to profound, hearing aids

[Guest guest]

<<I gave them the name of a dr. who does cochlear implants in our area, but

they don't

cover her, so I asked if they could give me a dr who they do cover, but they

couldn't. They asked the specialty. I said Audiology so they offered to

give the names of audiologists.>>

Hi Sara,

I know you must be feeling somewhat overwhelmed by all that's going on right now

but you're certainly doing the right thing by seeking out as much info as you

can. I don't think any one of us has any special secret weapons for dealing

with the insurance companies and yes, the fact that they don't cover aids is

ridiculous and appalling. What I have seen with most of the big companies is

that they DO tend to cover CI's if they cover hearing loss at all. The fact

that your company didn't say no outright tells me that, if Tessa (love that

name!) qualifies, it's probably covered. Qualification is certainly varied

depending on area or company but I know that the guidelines have changed

recently and children do not necessarily have to have profound loss on both

sides before they can be implanted.

I thought I'd mention that you would be dealing with an ENT or other doctor who

specializes in ear, nose, throat, etc. surgeries and not an audiologist to

actually have a CI prescribed. The audiologist is the person who determines the

level of loss and would work closely with the physician...but this may explain

why some of the audiology clinics you were referred to by your insurance company

said they don't " do " CI's. There is probably some crossover of specialties out

there but in my area of Washington state, the audi would always refer someone to

the ENT for any surgical options. The audi WOULD prescribe and fit hearing aids

and many of them are extremely knowledgeable about other aspects of hearing

loss, particularly language development.

A book I would recommend as a starting point for making decisions is Choices in

Deafness by Sue Schwarz. This is an overview of the communication options out

there for kids with hearing loss. It doesn't take sides in any debate about

which is best...just presents each method as fairly as the author felt she

could. It's not perfect, but it will give you a place to begin. I know you've

been referred back to the Listen-up.org site and I would also HIGHLY recommend

browsing there. I truly think that Kay has found a link to help answer any

question!

Carol - mom to , 7.11, mod to profound, hearing aids

[Guest guest]

<<I gave them the name of a dr. who does cochlear implants in our area, but

they don't

cover her, so I asked if they could give me a dr who they do cover, but they

couldn't. They asked the specialty. I said Audiology so they offered to

give the names of audiologists.>>

Hi Sara,

I know you must be feeling somewhat overwhelmed by all that's going on right now

but you're certainly doing the right thing by seeking out as much info as you

can. I don't think any one of us has any special secret weapons for dealing

with the insurance companies and yes, the fact that they don't cover aids is

ridiculous and appalling. What I have seen with most of the big companies is

that they DO tend to cover CI's if they cover hearing loss at all. The fact

that your company didn't say no outright tells me that, if Tessa (love that

name!) qualifies, it's probably covered. Qualification is certainly varied

depending on area or company but I know that the guidelines have changed

recently and children do not necessarily have to have profound loss on both

sides before they can be implanted.

I thought I'd mention that you would be dealing with an ENT or other doctor who

specializes in ear, nose, throat, etc. surgeries and not an audiologist to

actually have a CI prescribed. The audiologist is the person who determines the

level of loss and would work closely with the physician...but this may explain

why some of the audiology clinics you were referred to by your insurance company

said they don't " do " CI's. There is probably some crossover of specialties out

there but in my area of Washington state, the audi would always refer someone to

the ENT for any surgical options. The audi WOULD prescribe and fit hearing aids

and many of them are extremely knowledgeable about other aspects of hearing

loss, particularly language development.

A book I would recommend as a starting point for making decisions is Choices in

Deafness by Sue Schwarz. This is an overview of the communication options out

there for kids with hearing loss. It doesn't take sides in any debate about

which is best...just presents each method as fairly as the author felt she

could. It's not perfect, but it will give you a place to begin. I know you've

been referred back to the Listen-up.org site and I would also HIGHLY recommend

browsing there. I truly think that Kay has found a link to help answer any

question!

Carol - mom to , 7.11, mod to profound, hearing aids

[Guest guest]

Ok I will withdraw the statement I made on what is considered HOH, I was just

repeating what I have been told. If my answer was incorrect then please let me

know what the correct answer for what is HOH is. I wasn't making a blanket

statement that is what I was told.

Re: Introduction (I'm new)

Hi Barb - I couldn't agree with you more. My older son would be described as

hard of hearing - he has a a sloping severe loss. He has moderate hearing in

the lower ranges but slopes down to profound in higher frequencies. Like your

daughter, he gets nothing without his hearing aids, has a hard time with the

telephone (even with his telecoils), and we caption the television because the

TV is hard for him to understand, even with hearing aids. His hearing loss

absolutely affects him and while he does live more or less as a hearing

person,

it's because of tons of work, good amplication and excellent people working

with him.

I think we need to be very careful making blanket statements such as the first

quoted sentence below - particularly to a new person - without knowing all the

facts.

Barbara

--- You wrote:

> wrote first - This is basically someone with a mild loss or someone

with a more severe loss who with hearing aids is able to live as a hearing

person with slight difficulty.

Then Barb wrote -- My daughter is hard of hearing, and that is not how I would

describe it. She has more than " slight " difficulty with many things that are

no big deal at all to a hearing person.

She has a moderate-severe cookie bite loss. Without her aids she doesn't hear

a whole lot. She can't hear the phone ring unless she's right next to it, and

she can't really understand speech at all unless it's loud and something she's

used to hearing. Actually, she can understand " I love you, " even in a very

quiet voice, because she hears enough of the vowel sounds to recognize it.

She has a hard time using the telephone. Even with the t-coil, she doesn't

understand women well on the phone. She'll talk to her dad, and one grandma

(with a fairly deep voice), but not the other grandma. She'll rarely speak to

me on the phone, and she can't really understand her friends at all. We're in

the process of getting her an amplified phone from the state.

She can't understand the tv unless the volume is up quite loud, so the

captions

are always on and she reads the tv.

One of the biggest challenges she faces, every day, is the perception that she

is a hearing person with just a slight difficulty. Because she speaks well,

and can hear well up close, most people forget that she is going to have

trouble if there's lots of background noise, or if there's much distance

between her and the person speaking, that many sounds aren't clear to her no

matter how loud they are, and that even with the hearing aids, she still

doesn't hear like a hearing person.

Barbara Handley

http://www.deafhomeschool.com

--- end of quote ---

*******************************

Barbara Mellert

Manager, Social Science Computing

Kiewit Computing Services

Dartmouth College

13A Silsby Hall; HB 6121

Hanover NH 03755

Telephone: 603/646-2877

URL: http://www.dartmouth.edu/~ssc

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]

Ok I will withdraw the statement I made on what is considered HOH, I was just

repeating what I have been told. If my answer was incorrect then please let me

know what the correct answer for what is HOH is. I wasn't making a blanket

statement that is what I was told.

Re: Introduction (I'm new)

Hi Barb - I couldn't agree with you more. My older son would be described as

hard of hearing - he has a a sloping severe loss. He has moderate hearing in

the lower ranges but slopes down to profound in higher frequencies. Like your

daughter, he gets nothing without his hearing aids, has a hard time with the

telephone (even with his telecoils), and we caption the television because the

TV is hard for him to understand, even with hearing aids. His hearing loss

absolutely affects him and while he does live more or less as a hearing

person,

it's because of tons of work, good amplication and excellent people working

with him.

I think we need to be very careful making blanket statements such as the first

quoted sentence below - particularly to a new person - without knowing all the

facts.

Barbara

--- You wrote:

> wrote first - This is basically someone with a mild loss or someone

with a more severe loss who with hearing aids is able to live as a hearing

person with slight difficulty.

Then Barb wrote -- My daughter is hard of hearing, and that is not how I would

describe it. She has more than " slight " difficulty with many things that are

no big deal at all to a hearing person.

She has a moderate-severe cookie bite loss. Without her aids she doesn't hear

a whole lot. She can't hear the phone ring unless she's right next to it, and

she can't really understand speech at all unless it's loud and something she's

used to hearing. Actually, she can understand " I love you, " even in a very

quiet voice, because she hears enough of the vowel sounds to recognize it.

She has a hard time using the telephone. Even with the t-coil, she doesn't

understand women well on the phone. She'll talk to her dad, and one grandma

(with a fairly deep voice), but not the other grandma. She'll rarely speak to

me on the phone, and she can't really understand her friends at all. We're in

the process of getting her an amplified phone from the state.

She can't understand the tv unless the volume is up quite loud, so the

captions

are always on and she reads the tv.

One of the biggest challenges she faces, every day, is the perception that she

is a hearing person with just a slight difficulty. Because she speaks well,

and can hear well up close, most people forget that she is going to have

trouble if there's lots of background noise, or if there's much distance

between her and the person speaking, that many sounds aren't clear to her no

matter how loud they are, and that even with the hearing aids, she still

doesn't hear like a hearing person.

Barbara Handley

http://www.deafhomeschool.com

--- end of quote ---

*******************************

Barbara Mellert

Manager, Social Science Computing

Kiewit Computing Services

Dartmouth College

13A Silsby Hall; HB 6121

Hanover NH 03755

Telephone: 603/646-2877

URL: http://www.dartmouth.edu/~ssc

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]

Ok I will withdraw the statement I made on what is considered HOH, I was just

repeating what I have been told. If my answer was incorrect then please let me

know what the correct answer for what is HOH is. I wasn't making a blanket

statement that is what I was told.

Re: Introduction (I'm new)

Hi Barb - I couldn't agree with you more. My older son would be described as

hard of hearing - he has a a sloping severe loss. He has moderate hearing in

the lower ranges but slopes down to profound in higher frequencies. Like your

daughter, he gets nothing without his hearing aids, has a hard time with the

telephone (even with his telecoils), and we caption the television because the

TV is hard for him to understand, even with hearing aids. His hearing loss

absolutely affects him and while he does live more or less as a hearing

person,

it's because of tons of work, good amplication and excellent people working

with him.

I think we need to be very careful making blanket statements such as the first

quoted sentence below - particularly to a new person - without knowing all the

facts.

Barbara

--- You wrote:

> wrote first - This is basically someone with a mild loss or someone

with a more severe loss who with hearing aids is able to live as a hearing

person with slight difficulty.

Then Barb wrote -- My daughter is hard of hearing, and that is not how I would

describe it. She has more than " slight " difficulty with many things that are

no big deal at all to a hearing person.

She has a moderate-severe cookie bite loss. Without her aids she doesn't hear

a whole lot. She can't hear the phone ring unless she's right next to it, and

she can't really understand speech at all unless it's loud and something she's

used to hearing. Actually, she can understand " I love you, " even in a very

quiet voice, because she hears enough of the vowel sounds to recognize it.

She has a hard time using the telephone. Even with the t-coil, she doesn't

understand women well on the phone. She'll talk to her dad, and one grandma

(with a fairly deep voice), but not the other grandma. She'll rarely speak to

me on the phone, and she can't really understand her friends at all. We're in

the process of getting her an amplified phone from the state.

She can't understand the tv unless the volume is up quite loud, so the

captions

are always on and she reads the tv.

One of the biggest challenges she faces, every day, is the perception that she

is a hearing person with just a slight difficulty. Because she speaks well,

and can hear well up close, most people forget that she is going to have

trouble if there's lots of background noise, or if there's much distance

between her and the person speaking, that many sounds aren't clear to her no

matter how loud they are, and that even with the hearing aids, she still

doesn't hear like a hearing person.

Barbara Handley

http://www.deafhomeschool.com

--- end of quote ---

*******************************

Barbara Mellert

Manager, Social Science Computing

Kiewit Computing Services

Dartmouth College

13A Silsby Hall; HB 6121

Hanover NH 03755

Telephone: 603/646-2877

URL: http://www.dartmouth.edu/~ssc

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]

Welcome Sara.....

I haven't been a member here long, but there are several of us in

just about the same place or have recently been where you are.

My daughter has a moderate to severe loss in her right & severe to

profound loss in her left ear. We are curretly going through the

Cochlear Implant evaluation at Shands Teaching hospital in

Gainesville, FL.

Your ENT will know the Drs in the area who do Cochlear Implants, if

that is what she needs. There are only 4 Drs within 150 mi radius

of us, who perform them.

We are currently trying one last time to see if we can get any

results with her hearing aids completely maxed out.

I have found that if you start scratching the surface in your

community, you'll be amazed at the resources & wonderful,

knowledgeable families that you will come to know. Your Ped may

know of families that have gone through similiar things. Ask to be

put in touch with them. Once we were, I could not believe how

quickly word spread & all sorts of info came our way.

Our Insurance did not cover Lindsi's hearing aids. The Lion's Club

here, only provides aids to adults, not children.

Good luck & post here with your questions. There is a wealth of

knowledge on this board.

Debby

Mom to Lindsi...23 months old from China

[Guest guest]

Hey ,

Welcome! I know very little about CIs, because my son's loss has been

stictly a condcutive one -- until recently. Now one ENT sees the beginnings of

an

SNL (sensorinueral) loss and I am also learning about CIs and asking lots of

people lots of questions. But my son is now 13 and he won't be a candidate for

few years. By then, the decision for a CI will be his, not ours. but we want him

to have all the info available so he can make that decision wisely.

My comments have to do with the insurance company and getting aides. You've

gotten great advice but I want to repeat the advice to contact the Lion's Club.

Our local Lion's Club will pay for both hearing evaluations and hearing aides

for kids -- they also provide glasses and vision testing. I don't know what

the requirements are but I know that the process is relatively painless. Once

they've agreed to provide the services, you just show up at the

audi/optomologist and get evaluated (if that is needed). Then order the

glasses/aides.

Parents simply sign the papers and never see a bill, the Lion's Club handles all

of

that. Around here they have arrangements with certain doctors, so you do have

to see their doctor if an evaluation is needed. But we've been contacted by

them and the lady said if we ever needed help with buying Ian's aides, all we

needed to do was let them know. Thankfully we have other resources including

some very supportive family.

As to the insurance. I'll assume that yours is like mine and tell you what

we've done in the past and plan to do in the future. They do not have ANY

doctors who are " in-plan " who provide services related to CIs, or who have even

seen

an actual CI, let alone seen one implanted. When Ian had surgery in 4th

grade, I found out that they would cover " out-of-plan " doctors because they had

nothing to offer " in-plan. " Ian's surgery was at Columbia Prebysterian in NYC

and

that hospital did/does take our insurance. From there we simply had the

doctors -- ones that WE chose, contact the insurance company and have the

surgery

pre-approved. The one bad part is that the insurance will cover only 80% of the

cost of the out-of-plan doctors. But it turned out that the doctors were

wonderful and everyone agreed to accept the insurance's 80% as payment-in-full.

Those few who didn't were minor players with MUCH smaller bills, so while paying

extra bills was a pain, we were not paying out thousands of dollars to the

surgeons.

My husband's job now has AETNA as the insurance company so I think the bank

of doctors is much larger. And the 20% that we might have to pay is a much

larger amount when talking about a CI. We're gathering information at this

point.

When the time comes that Ian is a candidate, hopefully I'll know what I'm

doing (grin).

Oh, and a funny story along the line of prothetics ... the surgery when Ian

was in 4th grade was to replace the center middle ear bone (the incus, I

think). It turned out that his stapes -- the inner-most one, was " fixed " meaing

stuck and not vibrating properly. It turned out that nothing could be done at

that

point, replacing the stapes was too dangerous at his age. The funny part of

this was that the insurance company paid for the entire surgery, actually two

surgeries sharing one anethesia event, but they refused to pay for the

prosthetic bone that was to be placed in Ian's middle ear. They stated that our

insurance does not cover prosthetics, no matter what kind of prothetic we're

talking about.

All that expense and we would have had to pay for the teeny tiny plastic

bone. They covered the multiple CTscans and and MRI or two ... but not a tiny

piece of plastic. I was dumbfounded and planned to appeal it, but it turned out

it wasn't needed. Insurance companies are simply amazing, huh?!

Well, welcome to the group and don't be shy about asking questions ... there

are lots of people here with advice on where to fidn answers.

Best -- Jill