ABR broken again - help me make sense of this

[Guest guest]

Well, my audi called on Friday and said:

" Sara, I just tried to run the ABR machine and its broken again. I

don't know if this is good news or not for Jake but I couldn't even

get myself down to 70. I know it was working because we've run it

several times on different people and got normal readings. So I

don't know. I don't know what you are going to find this week. "

A little explanation: You know Jake tested mod. hearing impaired.

We have a second opinion scheduled this week BECAUSE a few days

after his ABR at his audi's office their ABR machine broke. They

don't know what is wrong with it. They originally thought it was

because they moved it to a differnet table in the office. But the

tech guy couldn't figure out what was wrong. They replaced one

part - and it appeared to be working for a few tests (those tests

that the audi refered to) but now its broken again. I don't know

what to think about this. Is he HOH or not? Why did she even tell

me this.

Before this phone call I asked them several times what they thought

and BOTH audis said that they thought his test results were

accurate - that the machine broke after his testing. But the one

audi (the one who left the message) has also said that she doesn't

know if it " was starting to go bad " during his test or not.

Just to fill you in - he had a 40 dB flat loss in both ears. They

said that the booth test backed that up but with a 14 month old how

accurate is a booth test?

UGH - this is just so frustrating. I don't know what to think.

Should I get my " hopes up " that he isn't HOH? Or should I assume

that he is. After all the kid has never tested " normal " BUT then

again his last ABR before this most recent one was boarderline!

Please set me straight on this one. The test is Wednesday so not to

much longer - hopefully they will at least be able to get some

results from him.

UGH.

[Guest guest]

In a message dated 6/12/2006 8:16:25 A.M. Eastern Daylight Time,

saraandchadd@... writes:

Please set me straight on this one. The test is Wednesday so not to

much longer - hopefully they will at least be able to get some

results from him.

UGH.

Sara,

I would request a referral to another audi office or a 'script for the test

to be performed in a local hospital where ABRs are done on a regular basis.

Also, at this point, I don't think I would trust the results from that

machine anyway. You have questionable results from a machine that is never

working

quite right. To me it sounds like time to bail on this facility and look for

a new place to do the test.

Best -- Jill

[Guest guest]

Sara,

I have to say I agree with Jill. At this point, I wouldn't trust the

results. I think if you can I would look elsewhere at this point as

well.

Tammy

Tamala S. Woodburn

Creative Memories Consultant

www.creativememories.com/TammyWoodburn

Re: ABR broken again - help me make sense of this

In a message dated 6/12/2006 8:16:25 A.M. Eastern Daylight Time,

saraandchadd@ yahoo.com writes:

Please set me straight on this one. The test is Wednesday so not to

much longer - hopefully they will at least be able to get some

results from him.

UGH.

Sara,

I would request a referral to another audi office or a 'script for the

test

to be performed in a local hospital where ABRs are done on a regular

basis.

Also, at this point, I don't think I would trust the results from that

machine anyway. You have questionable results from a machine that is

never working

quite right. To me it sounds like time to bail on this facility and look

for

a new place to do the test.

Best -- Jill

[Guest guest]

I second that.

Find a new hearing center and get a new test done. I hope they are doing a

sedated ABR? otherwise your results could be very inaccurate. (sorry if you

already said you were, I am back in summer school in the middle of studying

for a Neurology exam so I didn't have time to dig back through the

archives).

Guessing about a 40dB loss is just not something I would be willing to do.

Best,

Angie

Au.D candidate WSU

>

>

> In a message dated 6/12/2006 8:16:25 A.M. Eastern Daylight Time,

>

> saraandchadd@... writes:

>

> Please set me straight on this one. The test is Wednesday so not to

> much longer - hopefully they will at least be able to get some

> results from him.

>

> UGH.

>

> Sara,

>

> I would request a referral to another audi office or a 'script for the

> test

> to be performed in a local hospital where ABRs are done on a regular

> basis.

>

> Also, at this point, I don't think I would trust the results from that

> machine anyway. You have questionable results from a machine that is never

> working

> quite right. To me it sounds like time to bail on this facility and look

> for

> a new place to do the test.

>

> Best -- Jill

>

>

>

>

>

>

[Guest guest]

WE already had a second test scheduled at a different place - its for Wednesday.

They were already wanting a second opinion because his last test in June was at

25 dB which they were considering normal.

I just don't know what to think and I'm driving myself crazy. His first ABR

was at 55, his second was at 45 and 30 and the third was at 25 with this last

one being at 50. See why I'm driving myself crazy?? And those first three

tests were at their old facility with completly different machines.

Angie Mucci angie.mucci@...> wrote:

I second that.

Find a new hearing center and get a new test done. I hope they are doing a

sedated ABR? otherwise your results could be very inaccurate. (sorry if you

already said you were, I am back in summer school in the middle of studying

for a Neurology exam so I didn't have time to dig back through the

archives).

Guessing about a 40dB loss is just not something I would be willing to do.

Best,

Angie

Au.D candidate WSU

>

>

> In a message dated 6/12/2006 8:16:25 A.M. Eastern Daylight Time,

>

> saraandchadd@... writes:

>

> Please set me straight on this one. The test is Wednesday so not to

> much longer - hopefully they will at least be able to get some

> results from him.

>

> UGH.

>

> Sara,

>

> I would request a referral to another audi office or a 'script for the

> test

> to be performed in a local hospital where ABRs are done on a regular

> basis.

>

> Also, at this point, I don't think I would trust the results from that

> machine anyway. You have questionable results from a machine that is never

> working

> quite right. To me it sounds like time to bail on this facility and look

> for

> a new place to do the test.

>

> Best -- Jill

>

>

>

>

>

>

[Guest guest]

In a message dated 6/12/2006 11:04:55 P.M. Eastern Daylight Time,

saraandchadd@... writes:

I just don't know what to think and I'm driving myself crazy. His first ABR

was at 55, his second was at 45 and 30 and the third was at 25 with this last

one being at 50. See why I'm driving myself crazy?? And those first three

tests were at their old facility with completly different machines.

Oh man, what a range ... I wish I knew more about ABRs and had direct

experience with them! But to me, it sounds as though the results are indicating

some sort of a loss, they just haven't been able to pin it down.

And even if the least of the numbers is correct (25) your son has hearing

loss that shouldn't be dismissed Even mild losses are significant and need some

support. Not as much as kids with severe or profound losses, but just as

valid. Our Ian's loss was at 35 when we learned of it and he was had been

getting along just fine for almost 8 years. But once he was aided in his " bad "

ear,

it made a big difference for him. I've heard plenty of " he's not deaf

enough " or " not really deaf " comments, but a mild/moderate loss is indeed

important.

So, even if this is a mild loss, you are not wasting your time and energy.

You are doing your best for him with what you know at this point.

I guess my question for you is: Do you trust the doctor you are seeing?

After all the back and forth and weird test results, do you believe that this

doctor is doing right by your son?

I know that we're trained from childhood to respect our doctors and to trust

them to do what's best for us. But as an adult, we learn that they're just

people with the same failings as the rest of us. So, when you step past that

" doctor " definition and that automatic respect response, does your mommy-gut

trust this one?

Over the first 2 years of us knowing about Ian's hearing loss, we received

more doctor opinions than I can count. And I had to step past the automatic

doctor-awe and decide that my gut was leading me in the right direction. We saw

plenty of doctors only to move on to find another one in the same specialty.

We saw 3 neurologists before finding a fourth that actually spoke directly

and was capable diagnosing whether Ian did indeed have " benign focal

epilepsy. " (He doesn't and probably never did.)

If you trust this doctor to interpret the results, then follow that. If not,

shop for a new one. It's not easy to constantly be looking for new doctors,

but at some point, you find the one you need and can trust.

Best -- Jill

[Guest guest]

Thank you Jill - telling me that I wasn't wasting my time really makes me feel

better!

Yes, I do trust my doctors. The thing I like about them is that there are two

and they are always talking back and forth and researching things for me. Every

question I've had they've tried to look up an answer (like my question about

Terbutaline).

The director was once the lead audiologist at the only major private hospital

in my area so I trust that her abilities are one of the best.

With that said - I also have Hannah to compare to. If I don't trust their

results on Jake then I have to start questioning their results on hannah and I

by no way think they are incorrect about her.

Both audis originally said that they feel the tests are acurrate but now that

the machine is broken again they feel we should discredit them. They said they

don't want to give me false hope but they also want to get accurate results.

Only 16 more hours - oh I hope he stays asleep and we can get results tomorrow

- the only appointment I could get for a sedated ABR wasn't until July 21 and I

don't want to wait that long!!!!

JillcWood@... wrote:

In a message dated 6/12/2006 11:04:55 P.M. Eastern Daylight Time,

saraandchadd@... writes:

I just don't know what to think and I'm driving myself crazy. His first ABR

was at 55, his second was at 45 and 30 and the third was at 25 with this last

one being at 50. See why I'm driving myself crazy?? And those first three

tests were at their old facility with completly different machines.

Oh man, what a range ... I wish I knew more about ABRs and had direct

experience with them! But to me, it sounds as though the results are indicating

some sort of a loss, they just haven't been able to pin it down.

And even if the least of the numbers is correct (25) your son has hearing

loss that shouldn't be dismissed Even mild losses are significant and need some

support. Not as much as kids with severe or profound losses, but just as

valid. Our Ian's loss was at 35 when we learned of it and he was had been

getting along just fine for almost 8 years. But once he was aided in his " bad "

ear,

it made a big difference for him. I've heard plenty of " he's not deaf

enough " or " not really deaf " comments, but a mild/moderate loss is indeed

important.

So, even if this is a mild loss, you are not wasting your time and energy.

You are doing your best for him with what you know at this point.

I guess my question for you is: Do you trust the doctor you are seeing?

After all the back and forth and weird test results, do you believe that this

doctor is doing right by your son?

I know that we're trained from childhood to respect our doctors and to trust

them to do what's best for us. But as an adult, we learn that they're just

people with the same failings as the rest of us. So, when you step past that

" doctor " definition and that automatic respect response, does your mommy-gut

trust this one?

Over the first 2 years of us knowing about Ian's hearing loss, we received

more doctor opinions than I can count. And I had to step past the automatic

doctor-awe and decide that my gut was leading me in the right direction. We saw

plenty of doctors only to move on to find another one in the same specialty.

We saw 3 neurologists before finding a fourth that actually spoke directly

and was capable diagnosing whether Ian did indeed have " benign focal

epilepsy. " (He doesn't and probably never did.)

If you trust this doctor to interpret the results, then follow that. If not,

shop for a new one. It's not easy to constantly be looking for new doctors,

but at some point, you find the one you need and can trust.

Best -- Jill

[Guest guest]

I was just reading this email trail because I am very concerned with

my son's hearing loss ever progressing - he only has a moderate

hearing loss but has been diagnosed with Connexion 26 and our doctor

told us there is a good chance he will loose all his hearing this

year (so far though it has been stable, thank god).

We have had Donovan tested at 3 months and 6 months in the hearing

booth, but our audiologist has told us that after 6 months the ABRs

are not very sucessful/accurate unless the child is sedated to the

point that they are completely under - otherwise the ABR tests will

not be accurate.

Was your son sedated? How does he do in the hearing booth?

>

> In a message dated 6/12/2006 11:04:55 P.M. Eastern Daylight Time,

> saraandchadd@... writes:

>

> I just don't know what to think and I'm driving myself crazy. His

first ABR

> was at 55, his second was at 45 and 30 and the third was at 25

with this last

> one being at 50. See why I'm driving myself crazy?? And those

first three

> tests were at their old facility with completly different machines.

>

> Oh man, what a range ... I wish I knew more about ABRs and had

direct

> experience with them! But to me, it sounds as though the results

are indicating

> some sort of a loss, they just haven't been able to pin it down.

>

> And even if the least of the numbers is correct (25) your son has

hearing

> loss that shouldn't be dismissed Even mild losses are significant

and need some

> support. Not as much as kids with severe or profound losses, but

just as

> valid. Our Ian's loss was at 35 when we learned of it and he was

had been

> getting along just fine for almost 8 years. But once he was aided

in his " bad " ear,

> it made a big difference for him. I've heard plenty of " he's not

deaf

> enough " or " not really deaf " comments, but a mild/moderate loss is

indeed

> important.

>

> So, even if this is a mild loss, you are not wasting your time and

energy.

> You are doing your best for him with what you know at this point.

>

> I guess my question for you is: Do you trust the doctor you are

seeing?

> After all the back and forth and weird test results, do you

believe that this

> doctor is doing right by your son?

>

> I know that we're trained from childhood to respect our doctors

and to trust

> them to do what's best for us. But as an adult, we learn that

they're just

> people with the same failings as the rest of us. So, when you step

past that

> " doctor " definition and that automatic respect response, does your

mommy-gut

> trust this one?

>

> Over the first 2 years of us knowing about Ian's hearing loss, we

received

> more doctor opinions than I can count. And I had to step past the

automatic

> doctor-awe and decide that my gut was leading me in the right

direction. We saw

> plenty of doctors only to move on to find another one in the same

specialty.

> We saw 3 neurologists before finding a fourth that actually spoke

directly

> and was capable diagnosing whether Ian did indeed have " benign

focal

> epilepsy. " (He doesn't and probably never did.)

>

> If you trust this doctor to interpret the results, then follow

that. If not,

> shop for a new one. It's not easy to constantly be looking for new

doctors,

> but at some point, you find the one you need and can trust.

>

> Best -- Jill

>

>

[Guest guest]

Emylie,

I have to jump in and ask you about your doctor's comments about

your son losing all his hearing - was he telling you this based on

the fact that he has the Connexin 26 mutations? My daughter has a

mild-moderate loss as a result of cx 26 and the research I've seen

does not indicate a definite progression as a result.

Based on this research as well as meetings I've had with geneticists

and ENTs, it appears that the loss tends to be stable although there

are cases of progression. But I've never heard or read anywhere

that " there is a good chance " of progression, or that it will happen

in any specific amount of time.

If I'm wrong about any of this or the doctor had additional

information, I'd love to know about it. My daughter is 19 months and

her loss has been stable since birth.

Thanks,

Deganit

> >

> > In a message dated 6/12/2006 11:04:55 P.M. Eastern Daylight

Time,

> > saraandchadd@ writes:

> >

> > I just don't know what to think and I'm driving myself crazy.

His

> first ABR

> > was at 55, his second was at 45 and 30 and the third was at 25

> with this last

> > one being at 50. See why I'm driving myself crazy?? And those

> first three

> > tests were at their old facility with completly different

machines.

> >

> > Oh man, what a range ... I wish I knew more about ABRs and had

> direct

> > experience with them! But to me, it sounds as though the results

> are indicating

> > some sort of a loss, they just haven't been able to pin it down.

> >

> > And even if the least of the numbers is correct (25) your son

has

> hearing

> > loss that shouldn't be dismissed Even mild losses are

significant

> and need some

> > support. Not as much as kids with severe or profound losses, but

> just as

> > valid. Our Ian's loss was at 35 when we learned of it and he was

> had been

> > getting along just fine for almost 8 years. But once he was

aided

> in his " bad " ear,

> > it made a big difference for him. I've heard plenty of " he's not

> deaf

> > enough " or " not really deaf " comments, but a mild/moderate loss

is

> indeed

> > important.

> >

> > So, even if this is a mild loss, you are not wasting your time

and

> energy.

> > You are doing your best for him with what you know at this

point.

> >

> > I guess my question for you is: Do you trust the doctor you are

> seeing?

> > After all the back and forth and weird test results, do you

> believe that this

> > doctor is doing right by your son?

> >

> > I know that we're trained from childhood to respect our doctors

> and to trust

> > them to do what's best for us. But as an adult, we learn that

> they're just

> > people with the same failings as the rest of us. So, when you

step

> past that

> > " doctor " definition and that automatic respect response, does

your

> mommy-gut

> > trust this one?

> >

> > Over the first 2 years of us knowing about Ian's hearing loss,

we

> received

> > more doctor opinions than I can count. And I had to step past

the

> automatic

> > doctor-awe and decide that my gut was leading me in the right

> direction. We saw

> > plenty of doctors only to move on to find another one in the

same

> specialty.

> > We saw 3 neurologists before finding a fourth that actually

spoke

> directly

> > and was capable diagnosing whether Ian did indeed have " benign

> focal

> > epilepsy. " (He doesn't and probably never did.)

> >

> > If you trust this doctor to interpret the results, then follow

> that. If not,

> > shop for a new one. It's not easy to constantly be looking for

new

> doctors,

> > but at some point, you find the one you need and can trust.

> >

> > Best -- Jill

> >

> >

[Guest guest]

No my son has not been sedated. He has been sleeping for all of the ABRs. We

do have a sedated test scheduled but the test is not until late July. We are

just trying to get some sort of answers before then. I do not want to put him

under sedation if at all possible and am willing to take these test results he

is sleeps through the test.

This last booth test he did OK for about 2 min!!! They say the problem is

that after awhile they begin to look at the boxes in anticipation of something

happening so I don't rely on the booth test at all for my own sanity. Although

- at the time of his test they said that his booth test was consistent with the

ABR results.

They were already sending us for a second opinion because they are concerned

that the last ABR was 25 (he would have been 3 months old).

Emylie emyliemarie@...> wrote:

I was just reading this email trail because I am very concerned with

my son's hearing loss ever progressing - he only has a moderate

hearing loss but has been diagnosed with Connexion 26 and our doctor

told us there is a good chance he will loose all his hearing this

year (so far though it has been stable, thank god).

We have had Donovan tested at 3 months and 6 months in the hearing

booth, but our audiologist has told us that after 6 months the ABRs

are not very sucessful/accurate unless the child is sedated to the

point that they are completely under - otherwise the ABR tests will

not be accurate.

Was your son sedated? How does he do in the hearing booth?

>

> In a message dated 6/12/2006 11:04:55 P.M. Eastern Daylight Time,

> saraandchadd@... writes:

>

> I just don't know what to think and I'm driving myself crazy. His

first ABR

> was at 55, his second was at 45 and 30 and the third was at 25

with this last

> one being at 50. See why I'm driving myself crazy?? And those

first three

> tests were at their old facility with completly different machines.

>

> Oh man, what a range ... I wish I knew more about ABRs and had

direct

> experience with them! But to me, it sounds as though the results

are indicating

> some sort of a loss, they just haven't been able to pin it down.

>

> And even if the least of the numbers is correct (25) your son has

hearing

> loss that shouldn't be dismissed Even mild losses are significant

and need some

> support. Not as much as kids with severe or profound losses, but

just as

> valid. Our Ian's loss was at 35 when we learned of it and he was

had been

> getting along just fine for almost 8 years. But once he was aided

in his " bad " ear,

> it made a big difference for him. I've heard plenty of " he's not

deaf

> enough " or " not really deaf " comments, but a mild/moderate loss is

indeed

> important.

>

> So, even if this is a mild loss, you are not wasting your time and

energy.

> You are doing your best for him with what you know at this point.

>

> I guess my question for you is: Do you trust the doctor you are

seeing?

> After all the back and forth and weird test results, do you

believe that this

> doctor is doing right by your son?

>

> I know that we're trained from childhood to respect our doctors

and to trust

> them to do what's best for us. But as an adult, we learn that

they're just

> people with the same failings as the rest of us. So, when you step

past that

> " doctor " definition and that automatic respect response, does your

mommy-gut

> trust this one?

>

> Over the first 2 years of us knowing about Ian's hearing loss, we

received

> more doctor opinions than I can count. And I had to step past the

automatic

> doctor-awe and decide that my gut was leading me in the right

direction. We saw

> plenty of doctors only to move on to find another one in the same

specialty.

> We saw 3 neurologists before finding a fourth that actually spoke

directly

> and was capable diagnosing whether Ian did indeed have " benign

focal

> epilepsy. " (He doesn't and probably never did.)

>

> If you trust this doctor to interpret the results, then follow

that. If not,

> shop for a new one. It's not easy to constantly be looking for new

doctors,

> but at some point, you find the one you need and can trust.

>

> Best -- Jill

>

>

[Guest guest]

Dear Deganit --

I was in the middle of replying when I did something and lost the

message. My apologies if there are multiple responses from me.

Maybe I can be more concise this time.

First of all thank you for replying! You sound much more informed

about Connexin 26 and your information gives me optimism for my son!

My doctor told us that there is not a lot know about why hearing

loss happens, and that while they are now able to identify some

genes -- there are a thousand more that they cannot. However, he

went on to say that with Connexin 26 he was surprise that Donovan's

hearing was as good as it is and that ultimately he will loose it

all -- it may be this year or it may be when he is an adult. While

we are hoping for the best, we are also prepared for the worst and

that is why I am so concerned with getting his hearing tested so

frequently.

My audioligst and Parent Advisors, don't know many details about the

condition or how quickly the regression occurs (or if it is a

certainty that it will). The other children they work with that have

been diagnosed were not diagnosed until 2 and older and have always

been profound as far as anyone knows (the children's HL was not

identified until they were toddlers so they don't know if it

regresesd or was always profound).

On the CICircle all the mentions of Connexin 26 were for children

with CI's so I am so glad to hear of a parent out there who's child

is not profound!

> > >

> > > In a message dated 6/12/2006 11:04:55 P.M. Eastern Daylight

> Time,

> > > saraandchadd@ writes:

> > >

> > > I just don't know what to think and I'm driving myself crazy.

> His

> > first ABR

> > > was at 55, his second was at 45 and 30 and the third was at 25

> > with this last

> > > one being at 50. See why I'm driving myself crazy?? And those

> > first three

> > > tests were at their old facility with completly different

> machines.

> > >

> > > Oh man, what a range ... I wish I knew more about ABRs and had

> > direct

> > > experience with them! But to me, it sounds as though the

results

> > are indicating

> > > some sort of a loss, they just haven't been able to pin it

down.

> > >

> > > And even if the least of the numbers is correct (25) your son

> has

> > hearing

> > > loss that shouldn't be dismissed Even mild losses are

> significant

> > and need some

> > > support. Not as much as kids with severe or profound losses,

but

> > just as

> > > valid. Our Ian's loss was at 35 when we learned of it and he

was

> > had been

> > > getting along just fine for almost 8 years. But once he was

> aided

> > in his " bad " ear,

> > > it made a big difference for him. I've heard plenty of " he's

not

> > deaf

> > > enough " or " not really deaf " comments, but a mild/moderate

loss

> is

> > indeed

> > > important.

> > >

> > > So, even if this is a mild loss, you are not wasting your time

> and

> > energy.

> > > You are doing your best for him with what you know at this

> point.

> > >

> > > I guess my question for you is: Do you trust the doctor you

are

> > seeing?

> > > After all the back and forth and weird test results, do you

> > believe that this

> > > doctor is doing right by your son?

> > >

> > > I know that we're trained from childhood to respect our

doctors

> > and to trust

> > > them to do what's best for us. But as an adult, we learn that

> > they're just

> > > people with the same failings as the rest of us. So, when you

> step

> > past that

> > > " doctor " definition and that automatic respect response, does

> your

> > mommy-gut

> > > trust this one?

> > >

> > > Over the first 2 years of us knowing about Ian's hearing loss,

> we

> > received

> > > more doctor opinions than I can count. And I had to step past

> the

> > automatic

> > > doctor-awe and decide that my gut was leading me in the right

> > direction. We saw

> > > plenty of doctors only to move on to find another one in the

> same

> > specialty.

> > > We saw 3 neurologists before finding a fourth that actually

> spoke

> > directly

> > > and was capable diagnosing whether Ian did indeed have " benign

> > focal

> > > epilepsy. " (He doesn't and probably never did.)

> > >

> > > If you trust this doctor to interpret the results, then follow

> > that. If not,

> > > shop for a new one. It's not easy to constantly be looking for

> new

> > doctors,

> > > but at some point, you find the one you need and can trust.

> > >

> > > Best -- Jill

> > >

> > >

[Guest guest]

In a message dated 6/14/2006 7:52:46 A.M. Eastern Daylight Time,

stefanieac@... writes:

They only identified this

gene about 10 years ago, so there¹s really not enough research for a

definitive answer on its progressiveness: it seems to progress in some

cases, and not in others.

I tend to agree because of the mixed information we've been given by

different professionals over the years.

We were told the same thing about Ian's progressive loss when they suggested

he be tested for Connexin. Oddly enough, I thought it was one of the tests

run, but I don't believe it was. We never got a result, so I think it was

actually never done. We'll have that remedied next time we go into the city for

a

check-up.

We were told different things by different ENTs about Connexin. A couple

said that a progressive loss was a common thing but that they could not predict

how far or how quickly it would progress (Montefiore) and other didn't even

want to test for Connexin because they believe Ian's progressive loss is due to

otoschlerosis (Columbia Presbyterian) and not at all related to that. Plus,

they said, a progressive loss actually indicated Connexin is probably NOT the

culprit because Cx losses are usually stable and sensorineural.

(shrug) So, since we're not planning on having more kids, and Ian is nowhere

near to that stage of life, we've decided not to get too worried about it.

We'll get the Cx testing eventually, but we're not in any rush.

Best -- Jill

[Guest guest]

Just to weigh in on the connexin discussion: my son¹s HL was identified at

birth, his loss has been severe to profound (in one frequency) with no

significant change, and he is now 7 years old. They only identified this

gene about 10 years ago, so there¹s really not enough research for a

definitive answer on its progressiveness: it seems to progress in some

cases, and not in others.

At this point, I don¹t care, because he¹s an awesome kid, and if his loss

progresses, we¹ll have him implanted. I used to dread every hearing test,

but honestly, he¹s doing so well, and I know so many kids with CIs, that it

really doesn¹t matter to me anymore.

Stefanie

Mom to Ben, 7, severe to profound HOH, and Isabella, 11, mild loss

on 6/13/06 11:47 PM, Emylie at emyliemarie@... wrote:

> Dear Deganit --

> I was in the middle of replying when I did something and lost the

> message. My apologies if there are multiple responses from me.

> Maybe I can be more concise this time.

>

> First of all thank you for replying! You sound much more informed

> about Connexin 26 and your information gives me optimism for my son!

>

> My doctor told us that there is not a lot know about why hearing

> loss happens, and that while they are now able to identify some

> genes -- there are a thousand more that they cannot. However, he

> went on to say that with Connexin 26 he was surprise that Donovan's

> hearing was as good as it is and that ultimately he will loose it

> all -- it may be this year or it may be when he is an adult. While

> we are hoping for the best, we are also prepared for the worst and

> that is why I am so concerned with getting his hearing tested so

> frequently.

>

> My audioligst and Parent Advisors, don't know many details about the

> condition or how quickly the regression occurs (or if it is a

> certainty that it will). The other children they work with that have

> been diagnosed were not diagnosed until 2 and older and have always

> been profound as far as anyone knows (the children's HL was not

> identified until they were toddlers so they don't know if it

> regresesd or was always profound).

>

> On the CICircle all the mentions of Connexin 26 were for children

> with CI's so I am so glad to hear of a parent out there who's child

> is not profound!

>

>

>>>> > > >

>>>> > > > In a message dated 6/12/2006 11:04:55 P.M. Eastern Daylight

>> > Time,

>>>> > > > saraandchadd@ writes:

>>>> > > >

>>>> > > > I just don't know what to think and I'm driving myself crazy.

>> > His

>>> > > first ABR

>>>> > > > was at 55, his second was at 45 and 30 and the third was at 25

>>> > > with this last

>>>> > > > one being at 50. See why I'm driving myself crazy?? And those

>>> > > first three

>>>> > > > tests were at their old facility with completly different

>> > machines.

>>>> > > >

>>>> > > > Oh man, what a range ... I wish I knew more about ABRs and had

>>> > > direct

>>>> > > > experience with them! But to me, it sounds as though the

> results

>>> > > are indicating

>>>> > > > some sort of a loss, they just haven't been able to pin it

> down.

>>>> > > >

>>>> > > > And even if the least of the numbers is correct (25) your son

>> > has

>>> > > hearing

>>>> > > > loss that shouldn't be dismissed Even mild losses are

>> > significant

>>> > > and need some

>>>> > > > support. Not as much as kids with severe or profound losses,

> but

>>> > > just as

>>>> > > > valid. Our Ian's loss was at 35 when we learned of it and he

> was

>>> > > had been

>>>> > > > getting along just fine for almost 8 years. But once he was

>> > aided

>>> > > in his " bad " ear,

>>>> > > > it made a big difference for him. I've heard plenty of " he's

> not

>>> > > deaf

>>>> > > > enough " or " not really deaf " comments, but a mild/moderate

> loss

>> > is

>>> > > indeed

>>>> > > > important.

>>>> > > >

>>>> > > > So, even if this is a mild loss, you are not wasting your time

>> > and

>>> > > energy.

>>>> > > > You are doing your best for him with what you know at this

>> > point.

>>>> > > >

>>>> > > > I guess my question for you is: Do you trust the doctor you

> are

>>> > > seeing?

>>>> > > > After all the back and forth and weird test results, do you

>>> > > believe that this

>>>> > > > doctor is doing right by your son?

>>>> > > >

>>>> > > > I know that we're trained from childhood to respect our

> doctors

>>> > > and to trust

>>>> > > > them to do what's best for us. But as an adult, we learn that

>>> > > they're just

>>>> > > > people with the same failings as the rest of us. So, when you

>> > step

>>> > > past that

>>>> > > > " doctor " definition and that automatic respect response, does

>> > your

>>> > > mommy-gut

>>>> > > > trust this one?

>>>> > > >

>>>> > > > Over the first 2 years of us knowing about Ian's hearing loss,

>> > we

>>> > > received

>>>> > > > more doctor opinions than I can count. And I had to step past

>> > the

>>> > > automatic

>>>> > > > doctor-awe and decide that my gut was leading me in the right

>>> > > direction. We saw

>>>> > > > plenty of doctors only to move on to find another one in the

>> > same

>>> > > specialty.

>>>> > > > We saw 3 neurologists before finding a fourth that actually

>> > spoke

>>> > > directly

>>>> > > > and was capable diagnosing whether Ian did indeed have " benign

>>> > > focal

>>>> > > > epilepsy. " (He doesn't and probably never did.)

>>>> > > >

>>>> > > > If you trust this doctor to interpret the results, then follow

>>> > > that. If not,

>>>> > > > shop for a new one. It's not easy to constantly be looking for

>> > new

>>> > > doctors,

>>>> > > > but at some point, you find the one you need and can trust.

>>>> > > >

>>>> > > > Best -- Jill

>>>> > > >

>>>> > > >