Re: Digest Number 1270-for all parents

[Guest guest]

For all parents of hoh/deaf children:

Here's a question, I'll call it question of the day:

How did you decide wheither or not your child should get CI or not. What

were the weighing factors for YOUR choice....and what was your final

decision. How has your experience been, would you change it if you can, and

who influenced you in your decisions, (docs, peads, info, studies)?

Ok so it's a couple of questions but it all revolves around the same thing.

[Guest guest]

> How did you decide wheither or not your child should get CI or not.

We're fortunate (well, it depends on the way you look at it) that with JD's

loss being progressive and his being old enough to voice his oppinion about

it, we asked for his imput.

I guess when he was around 10, I noticed his frustration level was very

high, and getting higher. I sat him down and helped him realize that his

hearing was getting worse and worse, and that he was at the point where we

were going to have to make some changes - that his hearing was now bad

enough that he couldn't consider hearing as his main path to communication

in any but the most ideal listening environments.

I pointed out what each of his options were, and since I didn't want him to

pick something just to make me happy, I kind of painted the CI in an

unfavorable light. I told him that if we chose to add signs, his best friend

and her family had already told us that they would go to classes with us so

they could continue to be a part of his life (it helps that they were also

our best friends). The CI, I was sure to mention words like Operation,

Blood, Cutting, Hospital, etc. He told us he wanted to be able to hear, and

if that's what it took, then that's what he wanted. I told him we had to

actually meet someone with a CI, and he had to come up with 10 questions

that he wanted to ask that someone - about things that were important to

him.

We did, and his decision was for the CI - so that's the direction we focused

our efforts in.

> would you change it if you can

Nope.

> who influenced you in your decisions

The biggest influence was always my son. Being able to hear was very

important to him, something he pretty much based who he was on, something he

wanted most in the world to do. If you ever met him, you would understand

what I mean. That's why the progressive nature of his hearing loss hit me so

hard. It was the one thing in the world he wanted most to be able to do, and

the one thing in the world that was slowly being taken away.

Hugs,

-Kay

[Guest guest]

, my 8 yr old daughter has had her CI for 3 years, It was a godsend

for her. I started to hear her voice before she lost her hearing, and I

wanted to hear it again and not just screams from her not understanding us

and vice versa. The only thing that I would have changed is making the

decision sooner than I did.. My daughter takes it off at nite and puts in

on 1st thing in the morning.. she loves it. I am a deaf ed teacher and I

felt this was the best thing to do for my daughter. Tahna

Re: Digest Number 1270-for all parents

> For all parents of hoh/deaf children:

>

> Here's a question, I'll call it question of the day:

>

> How did you decide wheither or not your child should get CI or not. What

> were the weighing factors for YOUR choice....and what was your final

> decision. How has your experience been, would you change it if you can,

and

> who influenced you in your decisions, (docs, peads, info, studies)?

>

> Ok so it's a couple of questions but it all revolves around the same

thing.

>

>

>

>

>

> 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]

We're deciding whether or not to go with an implant. My daughter who uses

ASL did hear until about 19 months; then she started really losing heearing.

No known cause but I suspect CMV. She had other issues, such an absence

seizures and what her neuro termed tourette's disorder. She does better

with a digital aid, but not much better. I think a CI would boost her

ability to hear music and environmental sounds. I realize that at 9, an

implant may not have the same effect as if she were 2. Plus our health

insurance never covered it until now. I respect the deaf culture and Hayley

does attend some activities. The population of deaf kids is very small. It

also seems that the ideas are changing, where it used to be a very

controversial it does not seem to be as much anymore within the deaf

community. By the way, not all implant centers would consider her a

candidate. House Ear Clinic really discouraged it, at her age and the fact

she is an ASL user. If you want to know more email me offlist

maryemapa@...

>

>Reply-To: Listen-Up

>To: <Listen-Up >

>Subject: Re: Digest Number 1270-for all parents

>Date: Sat, 9 Feb 2002 18:36:25 -0500

>

>For all parents of hoh/deaf children:

>

>Here's a question, I'll call it question of the day:

>

>How did you decide wheither or not your child should get CI or not. What

>were the weighing factors for YOUR choice....and what was your final

>decision. How has your experience been, would you change it if you can,

>and

>who influenced you in your decisions, (docs, peads, info, studies)?

>

>Ok so it's a couple of questions but it all revolves around the same thing.

>

>

>

_________________________________________________________________

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[Guest guest]

> > How did you decide wheither or not your child should get CI or not.

>

===========

I'm SO interested in responses to this too! I'm so glad someone asked

this. Our 3-yr-old is in the gray area...he is eligible for a CI, but

theoretically his aids and FMs should bring him right to the same level.

My husband is VERY resistent to the idea; I thought we should have done

it 12 - 18 months ago. Every day we lose more ground with speech and

language.

Has anyone with a borderline case done it here?

[Guest guest]

Hi ,

Our son received his CI in May (at age 7) after a progressive loss from

mild - moderate at diagnosis at 3 1/2 to profound this year. We struggled with

the decision to implant him since he was what they call a " very successful

hearing aid user " . However, he really had to struggle and work so hard to

comprehend speech. And ultimately, if he could not see you, then comprehension

became difficult. We finally decided to go ahead with his CI and WOW, what a

difference it has made! His brother is 5 and is following the same

progression. He is now a " boderline " candidate, but we have decided to go ahead

an implant him as we have seen the difference between what he can acheive with

his aids and the CI. His surgery is scheduled for March 5th.

Let me give you an example of the difference......a few nights ago after supper,

(with aids) was in the kitchen with me. (with CI on) was in his

bedroom with his sister (who is hearing) playing a computer game. I asked

loudly " who wants ice cream? " Both and called from the other room

" I do " and , who was sitting at the kitchen table right in front of me

said " huh? "

Please let me know if you have any specific questions....I am happy to share our

experiences. We are implanting at borderline because we have seen first

hand what the possibilites are and want him to have the same chance as

to hear and comprehend speech as easily as possible.

Regards,

Trish

Re: Digest Number 1270-for all parents

> > How did you decide wheither or not your child should get CI or not.

>

===========

I'm SO interested in responses to this too! I'm so glad someone asked

this. Our 3-yr-old is in the gray area...he is eligible for a CI, but

theoretically his aids and FMs should bring him right to the same level.

My husband is VERY resistent to the idea; I thought we should have done

it 12 - 18 months ago. Every day we lose more ground with speech and

language.

Has anyone with a borderline case done it here?

[Guest guest]

At 03:38 PM 2/10/2002 -0500, you wrote:

> > > How did you decide wheither or not your child should get CI or not.

> >

>===========

>

>I'm SO interested in responses to this too! I'm so glad someone asked

>this. Our 3-yr-old is in the gray area...he is eligible for a CI, but

>theoretically his aids and FMs should bring him right to the same level.

>My husband is VERY resistent to the idea; I thought we should have done

>it 12 - 18 months ago. Every day we lose more ground with speech and

>language.

>

>Has anyone with a borderline case done it here?

Yeah. Both of my kids are borderline cases. My daughter lost more hearing

progressively, which put us in the position of either implanting her or

trying the most powerful aids. At 5 years old, with a progressive loss, the

decision was easy.

My 10 year old is another matter. He's been borderline for years. We're

going through the motions this spring, but he has to decide whether he is

willing to do it. He wants to hear better. He has reservations about the

process. Time will tell how it comes out.

Borderline cases are the ones nobody wants to talk about.

Chris

[Guest guest]

I'm also glad this discussion has been started. I'm

not sure if my daughter even qualifies for a CI

(moderate to severe loss, depending on frequency), but

there is the possibility that her hearing may decrease

later, in which case she will. I'm curious, though,

any input from people who chose not to implant? I'll

admit I have some reservations, as I'm sure everyone

does when considering surgery for their child, but at

this point my primary reason for not pursuing it is

that my daughter simply has too much residual hearing

to risk messing with at this point.

--- wrote:

> For all parents of hoh/deaf children:

>

> Here's a question, I'll call it question of the day:

>

> How did you decide wheither or not your child should

> get CI or not. What

> were the weighing factors for YOUR choice....and

> what was your final

> decision. How has your experience been, would you

> change it if you can, and

> who influenced you in your decisions, (docs, peads,

> info, studies)?

>

> Ok so it's a couple of questions but it all revolves

> around the same thing.

>

>

>

>

__________________________________________________

[Guest guest]

,

Oops. Looks like my message only posted back to you

and not to the group. I'll try again!

-Chryste

--- wrote:

> For all parents of hoh/deaf children:

>

> Here's a question, I'll call it question of the day:

>

> How did you decide wheither or not your child should

> get CI or not. What

> were the weighing factors for YOUR choice....and

> what was your final

> decision. How has your experience been, would you

> change it if you can, and

> who influenced you in your decisions, (docs, peads,

> info, studies)?

>

> Ok so it's a couple of questions but it all revolves

> around the same thing.

>

>

>

>

__________________________________________________

[Guest guest]

My son was definitely borderline, with a mild to profound loss. He did

fairly well with hearing aids and AV therapy from the age of 8 months.

However, when he started school, we noticed that he was having trouble

keeping up with the other kids (he has always been mainstreamed), so we

started investigating the implant. We did a lot of testing, tried all kinds

of different hearing aids, did research and talked to people - it took me

two years to make up my mind to go ahead. Now, all I can say is that I wish

we had had it done years ago. He has been " switched on " for nearly a year

now and is doing wonderfully. He can hear at 25 dB or better across the

board and his speech and language have improved tremendously. If you have

any questions, don't hesitate to ask.

(, N24C, 02/01)

Original Message-----

From: Reiser

Sent: Sunday, February 10, 2002 3:38 PM

To: Listen-Up

Subject: Re: Digest Number 1270-for all parents

> > How did you decide wheither or not your child should get CI or not.

>

===========

I'm SO interested in responses to this too! I'm so glad someone asked

this. Our 3-yr-old is in the gray area...he is eligible for a CI, but

theoretically his aids and FMs should bring him right to the same level.

My husband is VERY resistent to the idea; I thought we should have done

it 12 - 18 months ago. Every day we lose more ground with speech and

language.

Has anyone with a borderline case done it here?

[Guest guest]

We are not there- to have to make the decision about a CI. Margie has

progressive loss so I often wonder, " what if... " . I keep thinking about all

the new technology they are working on. Maybe something better will be

developed soon. What about people who already got the CI? Could they be a

candidate for the newer technology? However, I do know that if Margie loses

so much hearing that her hearing aids don't help her, she would very much

like to hear again. I'm glad we do not have to make such huge decisions.

We will cross each road as we come to it!

Randie Chubin

Reply-To: Listen-Up

To: Listen-Up

Subject: Re: Digest Number 1270-for all parents

Date: Sun, 10 Feb 2002 16:39:57 -0800 (PST)

I'm also glad this discussion has been started. I'm

not sure if my daughter even qualifies for a CI

(moderate to severe loss, depending on frequency), but

there is the possibility that her hearing may decrease

later, in which case she will. I'm curious, though,

any input from people who chose not to implant? I'll

admit I have some reservations, as I'm sure everyone

does when considering surgery for their child, but at

this point my primary reason for not pursuing it is

that my daughter simply has too much residual hearing

to risk messing with at this point.

--- wrote:

> For all parents of hoh/deaf children:

>

> Here's a question, I'll call it question of the day:

>

> How did you decide wheither or not your child should

> get CI or not. What

> were the weighing factors for YOUR choice....and

> what was your final

> decision. How has your experience been, would you

> change it if you can, and

> who influenced you in your decisions, (docs, peads,

> info, studies)?

>

> Ok so it's a couple of questions but it all revolves

> around the same thing.

>

>

>

>

__________________________________________________

[Guest guest]

In a message dated 2/9/02 5:27:56 PM Central Standard Time,

murdockhome@... writes:

> How did you decide wheither or not your child should get CI or not. What

> were the weighing factors for YOUR choice....and what was your final

> decision.

's hearing loss seemed to be progressive. She was doing well with her

hearing aids and always wanted to be oral. So we researched the different

manufacturers and I got lots of information just from reading posts on this

list from other parents of implanted children. It seemed that if was

going to continue being oral - which we could see she really wanted - then we

wanted her to have the best possible technology for receiving language. We

came to the conclusion that with all the advances taking place in cochlear

implants that in the long run a cochlear implant would be best. We went to

one of the best implant centers in the country in my opinion. It just

happened to be covered by our insurance and was only a two hour drive. The

cochlear implant team there really helped us to make up our minds. The best

thing to do is get informed about everything. They also evaluated her from

April until December when the surgery was performed. So by the time it was

done she was very comfortable with the whole team which is a plus because we

had to see them so often after surgery. The scariest part of all of it was

seeing her after surgery - the bandage and the scar. All in all, I would

probably have done it sooner if only I had known we could. She was 5 at time

of surgery - I would have asked for it years earlier. The results are

overwhelming - she's doing great! So get informed, visit websites, talk to an

otolaryngologist and audiologist who are on a cochlear implant team, talk to

other parents of implanted children. Best of luck to you.

Suzette

[Guest guest]

In a message dated 2/10/02 9:54:54 PM Central Standard Time,

randie_chubin@... writes:

> What about people who already got the CI? Could they be a

> candidate for the newer technology?

I do know that the implant that received was made to be compatible to

receive whatever new technology might arise in 10 years. So I believe that

all the manufacturers have it in mind to develop implants that can work with

processors that will be so far advanced from the ones we have today say in 20

years. No one wants to have to re-implant - from what I researched the

manufacturers have really thought about the future in that way.

Suzette

[Guest guest]

Ellen Rhoades has authored a document for those who have kids who are

borderline candidates and are wondering if the implant is right for them:

Advantages & Disadvantages: Hearing Aids vs. Cochlear Implants for Those

with Severe Hearing Loss

http://www.auditoryverbaltraining.com/ha-ci.htm

For those who don't know, Ellen Rhoades is an AV therapist who has a

bilateral hearing loss and experience using both bilaterally (2 hearing

aids, then 2 implants) so this document comes from her direct knowledge.

Hugs,

Kay

[Guest guest]

Hi Kay, This is , you replied to my " new here e-mail. A coulpe questions

for you if you don't mind, because I have not meet anyone who went through

what I am going thru. is 8 and her favorite things in the world is

singing dancing and acting. I am a nurse and it is killing me to watch her

hearing slip away. How bad wad your son's loss when he was implanted, and was

he implanted in both ears (someone suggested only implanting 's good

ear ® as she has never heard from her left ear. Also what form of

communication does your son use when the ci is off. I don't know what we

should be doing if we should be learning asl or what.

thanks for any help you have.

[Guest guest]

Sorry folks, but today my ISP and my domain host were having a p*ssing

contest and rejected all my mail till a truce was signed this evening. If

anyone sent me something they expect an answer to, prior to this message,

PLEASE resend it!

> A couple questions

> for you if you don't mind

I certainly don't mind, in fact I encourage it. How else are you going to

find out the answers to your questions?

> How bad was your son's loss when he was implanted

By audiogram alone, he was in the Very Profound range and everybody who saw

it immediately said that he should have no problems being considered a

candidate based on his audiogram. The problem was, he always did very good

with his hearing aids and could make just a tiny bit of hearing go a

loooooong way. In some frequencies he had no response, 115 in one or two,

nothing better than 90 (I think - too lazy to go look). With his hearing

aids though, he did better than the 20% speech recognition it would have

taken him to qualify. But, since his hearing loss had been progressive, and

he lost 25 dB the month before in a couple of frequencies, it was obvious to

us and his surgeon that it was only a matter of time (a year at best) before

he would be a candidate and so the surgeon agreed to do him " off label " -

outside of FDA guidelines.

His surgeon now tells me that for kids such as my son, they can now use the

Hearing In Noise Test (HINT) to help these kids qualify. The problem was,

with these kids who have been trained to use what little hearing they have

to the max, they may perform wonderfully in an ideal listening environment,

but introduce ANY noise into the equation, and they can't. Since life rarely

takes place in an ideal listening environment, it's thought to reflect a

truer picture of the child's ability.

> and was

> he implanted in both ears (someone suggested only implanting 's good

> ear ® as she has never heard from her left ear.

Very few centers will implant both ears, unless they're participating in the

bilateral trials now underway. JD's center is actually one of those that's

participating and we were asked just this month if we would like to

participate, but we're not going to.

Since his hearing was pretty much equal in each ear, they let him choose

which ear to implant, and he chose his worse ear (only just a smidge

difference).

> Also what form of

> communication does your son use when the ci is off.

He speech-reads, and does very well with it. If he doesn't understand

something I say, I can either write it down or fingerspell it (he does know

fingerspelling receptively, but he either can't or won't do it expressively)

and he'll get it. He has had a very strong aversion to sign language in the

past. It's only since he's had his implant that he's now shown some interest

in learning to sign, but he gets bored after a few classes (we keep trying

whenever the interest surfaces).

He's never had any formal instruction in it (he's an AV kid), but he picked

up naturally what he needed, and as his hearing started to slide, his

speech-reading skills picked up. Unfortunately, he hates HAVING to look at

folks when they talk if he's busy doing something else (which is most of the

time) so having to look at them is as frustrating to him as not

understanding them. If his CI is off and I have to tap his shoulder more

than 3 times in an hour to get his attention (which is usually because he

turns away before I'm done talking) then he gets really P*SSED, but then he

wouldn't be a teenager if something didn't set him off. ;-)

Kay

[Guest guest]

At 10:18 PM 2/11/2002 -0800, you wrote:

> > and was

> > he implanted in both ears (someone suggested only implanting 's good

> > ear ® as she has never heard from her left ear.

>

>Very few centers will implant both ears, unless they're participating in the

>bilateral trials now underway. JD's center is actually one of those that's

>participating and we were asked just this month if we would like to

>participate, but we're not going to.

The results I've seen so far have been very inconclusive. There were slight

benefits overcoming the head shadow effect but otherwise, not enough to

convince insurers to pay for two.

Chris

[Guest guest]

> > JD's center is actually one of those that's

> > participating and we were asked just this month if we would like to

> > participate, but we're not going to.

I guess I should explain why we chose not to, at least at this time. With

the CI, JD has learned to better understand what little he does get with his

hearing aid - which is very common among children who have some residual

hearing and continue to wear hearing aids. I can definitely see a difference

in his hearing when he isn't wearing his hearing aid and just has the CI

on - though it's not enough to understand speech when he's only wearing the

hearing aid. Anyway, since he's functioning well, is a 'happy camper' and

has not expressed a desire to have the other side implanted, we'll stick

with our decision.

Our son's center is also doing a study on the localization skills of those

who wear both devices, over that of those who wear just an implant. Should

be interesting.

On the study they did last year on the use of both the hearing aid and the

CI (as JD does), their conclusions were:

" In our select group of patients, there was a demonstrated benefit from the

concurrent use of HAs and CIs. This benefit was seen most clearly when

patients were tested in noise. "

JD took part in both studies.

Hugs,

Kay

[Guest guest]

In a message dated 2/10/02 3:39:37 PM Eastern Standard Time, areiser@...

writes:

> I'm SO interested in responses to this too! I'm so glad someone asked

> this. Our 3-yr-old is in the gray area...he is eligible for a CI, but

> theoretically his aids and FMs should bring him right to the same level.

> My husband is VERY resistent to the idea; I thought we should have done

> it 12 - 18 months ago. Every day we lose more ground with speech and

> language.

>

> Has anyone with a borderline case done it here?

>

>

>

>

,

Where we were 2 and half years ago, and where we are today, has given

us the things that dreams are made of Both and Holly have a

fluctuating, progressive profound loss. When the girls where 3 and 2 years

old we tested them to see if they where candidates. It was ironic that their

discrimination made them not qualified. Over the next several years we

monitored the progression, and read all we could read about the implant. FDA

regulations continued to change, and by the time we reached the place that

the Implant looked like our next logical step they had become borderline

candidates. Time was an issue and the knowledge their losses could continue

to progress told us we needed to make the choice now. I can tell you that

the girls where successful hearing wears and I know today if technology had

not offered a new direction we would have been happy with the choices we had

made.

There where some hopes, and dreams we put on a shelf the day the girls

where diagnosed, and replaced them with many new ones. I have watched over

the last two years the girls pull back down many many of those shelved

dreams. We where able before the implant to ask them simple question from

another room like " do you want milk or water?. Today...I can have a complete

conversation with them from the kitchen with the TV blaring right in front of

them...amazing. I guess what I wouldn't have known before we did it, was the

ease in which the life they had learned to listen to, they have now with the

implant. We struggled long and hard with the choice...and from the moment we

decided, until today, I have never looked back.

Clarion 8/99

Holly Clarion 12/99