Just a question

[Guest guest]

Hi, my name is Abbey and my son Tag has CHARGE. I haven't written for quite some

time. I have a hard time getting everything I need to do in one day, done in

that ONE day. I have a problem I was hoping someone could help me with. Tag has

a mild to moderate hearing loss in his right ear (the amount of loss keeps

changing) and the left ear is absent. Tag does not speak, but said dad when he

was two. Now, he has stopped all verbal communication. He does have a 10 word

vocabulary using sign. I have been trying to get a hearing aid hoping that is

why he is not speaking. He did have a hearing aid at birth but the audiologist

felt it was confusing him so we stopped using it. Now, I would like to try one

again but the audiologist's (I have seen two different ones) feel that with the

moderate loss an aid is not needed. I saw an ENT who said he just needed tubes

and would be fine. She won't do the tubes until he has some fluid in his ears,

so every 4wks we go to the ENT in hopes he

has fluid. My question is ... are there any families with the same type of

hearing loss as Tag and has there been sucess with aids? Also, any CHARGER's who

began to speak after age four? I happened upon Kennedy Weir's website, she is

sooo cute and speaks so well. I really hope I didn't mess up by getting rid of

Tag's hearing aids.

Thanks so much,

Abbey

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

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[Guest guest]

I have never heard of a hearing aid " confusing " anyone...I'm a big proponent

of getting the aids on to make maximum use of all residual hearing possible.

(Kennedy's Mom)

>

> Hi, my name is Abbey and my son Tag has CHARGE. I haven't written for

> quite some time. I have a hard time getting everything I need to do in one

> day, done in that ONE day. I have a problem I was hoping someone could help

> me with. Tag has a mild to moderate hearing loss in his right ear (the

> amount of loss keeps changing) and the left ear is absent. Tag does not

> speak, but said dad when he was two. Now, he has stopped all verbal

> communication. He does have a 10 word vocabulary using sign. I have been

> trying to get a hearing aid hoping that is why he is not speaking. He did

> have a hearing aid at birth but the audiologist felt it was confusing him so

> we stopped using it. Now, I would like to try one again but the

> audiologist's (I have seen two different ones) feel that with the moderate

> loss an aid is not needed. I saw an ENT who said he just needed tubes and

> would be fine. She won't do the tubes until he has some fluid in his ears,

> so every 4wks we go to the ENT in hopes he

> has fluid. My question is ... are there any families with the same type of

> hearing loss as Tag and has there been sucess with aids? Also, any CHARGER's

> who began to speak after age four? I happened upon Kennedy Weir's website,

> she is sooo cute and speaks so well. I really hope I didn't mess up by

> getting rid of Tag's hearing aids.

>

> Thanks so much,

>

> Abbey

>

>

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

> All-new Yahoo! Mail - Fire up a more powerful email and get things done

> faster.

>

>

[Guest guest]

I just read your email and im rather confused and concerend. I had

mild hearing loss in my right ear since i was born and I had hearing

aids. My hearing in that ear has progressed to moderate. If your son

has moderate loss... im sorry but I think he needs hearing aids. How

can it be confusing to him? What do the audiologists mean. How is your

son's vision? Does he have good vision that he is fine with sign?

Wouldnt it be best to give him every opertunity wich includes better

hearing even if its just the one ear?

Sorry but I just have issues with audiologists too.

Chantelle

[Guest guest]

Why would it confuse Tag to have complete hearing? I've never gotten that

one. Aubrie, my daughter who is 8 yrs old, has mild-mod loss in one ear and

mod-severe in the other. There was debate when she was little about aiding

one or both ears. When I spoke with Dr Jim Thelin at the CHARGE conference,

if I recall correctly, he thought 2 would be good. You might try to reach

him for consultation. You'd have to get his contact info from n at the

Foundation.

Just to confuse issues a bit - My daughter's loss is pretty well corrected

with regular behind the ear aids. However, she has slightly better hearing

with a bone conduction aid. But I couldn't get anyone to agree to fit her

with one. After years of asking, she is finally using a loaner bone

conduction aid and doing incredibly well with it. She prefers it and we

think we're seeing an improvement in her speech.

From a purely audiological viewpoint, it may not have seemed like enough of

an improvement to warrant using the bone conduction aid. But in the world

of CHARGE, other rules don't usually apply.

Keep asking questions. Then follow your gut. And if your gut changes it's

mind, that's ok too!

Michele W

Aubrie's mom 8 yrs old

[Guest guest]

I agree with everyone who have replied earlier, get the aids cause it seems that

the aids helped him hear, I don't really like or trust an audiologist who turns

down hearing aids, or the ability to hear more out of life, so get another one.

One that agrees instead of disagrees. Trust your motherly insticts, they'll

steer you in the right direction. Tag is still young, and mothers are allowed to

make mistakes, because without those mistakes, we never learn how to do it

right.

Sincerely yours; Krista. 27 year old CHARGEr.

Abbey Harding wrote:

Hi, my name is Abbey and my son Tag has CHARGE. I haven't written for

quite some time. I have a hard time getting everything I need to do in one day,

done in that ONE day. I have a problem I was hoping someone could help me with.

Tag has a mild to moderate hearing loss in his right ear (the amount of loss

keeps changing) and the left ear is absent. Tag does not speak, but said dad

when he was two. Now, he has stopped all verbal communication. He does have a 10

word vocabulary using sign. I have been trying to get a hearing aid hoping that

is why he is not speaking. He did have a hearing aid at birth but the

audiologist felt it was confusing him so we stopped using it. Now, I would like

to try one again but the audiologist's (I have seen two different ones) feel

that with the moderate loss an aid is not needed. I saw an ENT who said he just

needed tubes and would be fine. She won't do the tubes until he has some fluid

in his ears, so every 4wks we go to the ENT in

hopes he

has fluid. My question is ... are there any families with the same type of

hearing loss as Tag and has there been sucess with aids? Also, any CHARGER's who

began to speak after age four? I happened upon Kennedy Weir's website, she is

sooo cute and speaks so well. I really hope I didn't mess up by getting rid of

Tag's hearing aids.

Thanks so much,

Abbey

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

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[Guest guest]

Abbey,

My son is four and started speaking clearly just this year. He has a VERY mild

loss and has worn aids since he was about 16 months old. We just recently

changed to digital and WOW, what a difference.

I was the one who requested the digital and I am glad I did. If you find the

RIGHT doc, he will tell you that it is extremely important to get aids on a

child. They are missing so very much of speech with out them.

Try requesting digital for a trial for 6 months, then if there is no sign of

change then, you tried!

I hope this helps.

, Randy & Garland Goodwin

---- Abbey Harding wrote:

=============

Hi, my name is Abbey and my son Tag has CHARGE. I haven't written for quite some

time. I have a hard time getting everything I need to do in one day, done in

that ONE day. I have a problem I was hoping someone could help me with. Tag has

a mild to moderate hearing loss in his right ear (the amount of loss keeps

changing) and the left ear is absent. Tag does not speak, but said dad when he

was two. Now, he has stopped all verbal communication. He does have a 10 word

vocabulary using sign. I have been trying to get a hearing aid hoping that is

why he is not speaking. He did have a hearing aid at birth but the audiologist

felt it was confusing him so we stopped using it. Now, I would like to try one

again but the audiologist's (I have seen two different ones) feel that with the

moderate loss an aid is not needed. I saw an ENT who said he just needed tubes

and would be fine. She won't do the tubes until he has some fluid in his ears,

so every 4wks we go to the ENT in hopes he

has fluid. My question is ... are there any families with the same type of

hearing loss as Tag and has there been sucess with aids? Also, any CHARGER's who

began to speak after age four? I happened upon Kennedy Weir's website, she is

sooo cute and speaks so well. I really hope I didn't mess up by getting rid of

Tag's hearing aids.

Thanks so much,

Abbey

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

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[Guest guest]

Our was aided at @ 2-3 months (one side, the other followed soon

after). As most of you know, has since lost all hearing, probably due

to recurrent, recurrent, recurrent (just cannot stress that enough)

infections which were treated promptly medically. She had surgery for a

mandicular cyst, was put on mighty antibiotics, yet managed to come

down with an ear infection --- her world renowned dr was aghast. Just a

dismal warning.

On a bright note: despite her now profound/total loss, the years of early

hearing have paid off and continue to do so. For a reason I simply don't

understand, she will ask me, especially me, for the name of something

and put her hand to my mouth and neck as I voice and sign. It's clear to

Andy and me that " hearing " or oral language continues to mean a great

deal to her. We just don't understand but accept her need.

In other words, get your kids aided as quickly as possible. If something

goes wrong later, at least she/he will have had the auditory information for

awhile.

Martha (who wonders how many soap boxes I have!)

And I need to write and cry but am too tired.

[Guest guest]

i think u had soem stupid audilogisth lolk

>

> Our was aided at @ 2-3 months (one side, the other followed soon

> after). As most of you know, has since lost all hearing, probably

> due

> to recurrent, recurrent, recurrent (just cannot stress that enough)

> infections which were treated promptly medically. She had surgery for a

> mandicular cyst, was put on mighty antibiotics, yet managed to come

> down with an ear infection --- her world renowned dr was aghast. Just a

> dismal warning.

> On a bright note: despite her now profound/total loss, the years of early

> hearing have paid off and continue to do so. For a reason I simply don't

> understand, she will ask me, especially me, for the name of something

> and put her hand to my mouth and neck as I voice and sign. It's clear to

> Andy and me that " hearing " or oral language continues to mean a great

> deal to her. We just don't understand but accept her need.

> In other words, get your kids aided as quickly as possible. If something

> goes wrong later, at least she/he will have had the auditory information

> for

> awhile.

> Martha (who wonders how many soap boxes I have!)

> And I need to write and cry but am too tired.

>

>

[Guest guest]

The confusion of hearing aids was explained to me by my son's audiologist this

way...people with no hearing loss process sound a certian way. Hearing aids

process sound a differnet way and with Tags loss only being mild the aids would

confuse him. I was also told not to aid the absent ear. I don't know if I

explained that very well. Does it sound like I am getting bad advice?

I really appreciate everyone's help. It sounds like hearing aids have been

extremely helpful expecially with CHARGE kids. I feel much better pushing for

aids for Tag. I think I will try and contact Dr. Thelin.

Thanks again,

Abbey

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

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[Guest guest]

well i dont know you could b

>

> The confusion of hearing aids was explained to me by my son's

> audiologist this way...people with no hearing loss process sound a certian

> way. Hearing aids process sound a differnet way and with Tags loss only

> being mild the aids would confuse him. I was also told not to aid the absent

> ear. I don't know if I explained that very well. Does it sound like I am

> getting bad advice?

>

> I really appreciate everyone's help. It sounds like hearing aids have been

> extremely helpful expecially with CHARGE kids. I feel much better pushing

> for aids for Tag. I think I will try and contact Dr. Thelin.

>

>

> Thanks again,

> Abbey

>

>

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

> Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates

> starting at 1¢/min.

>

>

[Guest guest]

Hi Abbey, I have been given the same advice about aids for my

daughter. She has a normal hearing on the right and a mild to

moderate on the left. I was told no hearing aids were necessary.

this was from an audiologist who follows about 50 CHARGE kids at the

U of Michigan Hospital. Hmmm.

B. mom to Zachary 5 years and Carmen 2 years (CHARGE)

>

> The confusion of hearing aids was explained to me by my son's

audiologist this way...people with no hearing loss process sound a

certian way. Hearing aids process sound a differnet way and with

Tags loss only being mild the aids would confuse him. I was also

told not to aid the absent ear. I don't know if I explained that

very well. Does it sound like I am getting bad advice?

>

> I really appreciate everyone's help. It sounds like hearing aids

have been extremely helpful expecially with CHARGE kids. I feel much

better pushing for aids for Tag. I think I will try and contact Dr.

Thelin.

>

>

> Thanks again,

> Abbey

>

>

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

> Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls.

Great rates starting at 1¢/min.

>

>

[Guest guest]

Abbey-

" What's a mom to do??? " - the million dollar question. Seems like we all

find ourselves in those dilemmas that don't have any clear answers and where

the " experts " seem to disagree as well. If all the answers were clear, this

CHARGE thing would be much easier to manage. I can do anything, no matter

how difficult, if I believe it is necessary and right. But when I'm

doubtful and undecided, then it's hard to move forward. So. sharing in your

perplexity - and hoping you'll come to an answer that works for you in time.

Michele W

Aubrie's mom 8 yrs

[Guest guest]

,

I couldn't have said it better myself. That is EXACTLY how I have been

feeling. It is very hard to move forward when you're unsure if it's right or

not. I appreciate your response very much. It's helpful to know other's share

the same feelings.

Abbey mom to Tag-4(CHARGE), Baylor-7, Payton-6, Ryder-1

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

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[Guest guest]

chaerge is fun it has many thoughts lol

>

> ,

> I couldn't have said it better myself. That is EXACTLY how I have been

> feeling. It is very hard to move forward when you're unsure if it's right or

> not. I appreciate your response very much. It's helpful to know other's

> share the same feelings.

>

>

> Abbey mom to Tag-4(CHARGE), Baylor-7, Payton-6, Ryder-1

>

>

>

>

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

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

> rates.

>

>

[Guest guest]

Abbey-

Oh yeah - we know. What I love about this group is that there's always an

entire world of CHARGE families who " get it " - and there's always at least

one, often times more, people who can actually put it into words when I

can't.

Michele

_____

From: CHARGE [mailto:CHARGE ] On Behalf Of

Abbey Harding

Sent: Sunday, October 01, 2006 8:48 PM

To: CHARGE

Subject: Re: Just a question

,

I couldn't have said it better myself. That is EXACTLY how I have been

feeling. It is very hard to move forward when you're unsure if it's right or

not. I appreciate your response very much. It's helpful to know other's

share the same feelings.

Abbey mom to Tag-4(CHARGE), Baylor-7, Payton-6, Ryder-1