Re: Storrs---re: Evan

[Guest guest]

Hi ,

Thanks for the reply. Evan has standard behind the ear aides, that I believe

are digital. They are only turned up about 1/3 of what he needs though, until

his ear growth slows down enough we can get some good fitting ear molds that

won't have so much feedback. In the past we have been able to pair his sedated

hearing evals with other surgeries, but as of right now we're out of surgeries!

So if we do another hearing test under anesthesia, it will be just for that

purpose...and I'm not so sure if getting that " baseline " information is worth

the risk.

Evan's air and bone conduction have shown the same level of loss on his BAERs,

so in theory a BAHA would not yeild any improvement. I have paid very careful

attention to Michele's posts about Aubrie, and her improvement with a BAHA and

with her recent surgery. About a month ago, my husband and I had a lengthy

discussion with Evan's ENT about the possibility of him at some point having a

surgery similar to Aubrie's (it's called an ossiculoplasty). I had already done

some research about the procedure, and knew for a number of reasons Evan was not

an ideal canditate. He reviewed Evan's temporal bone CT scan with us--there are

numerous abnormalities throughout his hearing and vestibular system including

multiple malformations and fusions of the hearing bones, a flattened cochlea,

one set of the three semi-circular canals is missing bilaterally, and the facial

nerve was not visualized on one side. He told us there because there were so

many malformations, it was likely

that there were abnormalities contributing to his hearing loss higher up in the

pathway than the ossicles. But currently, there isn't a way to test that to

find out. Also, because they can't see the facial nerve there would be a risk

of damaging it further so he would have a total facial palsy on that side vs.

just a partial.

He was all for trying a bone conduction hearing aide though, and did say Evan

would be a great candidate for a BAHA surgery. We have an appointment with

Evan's audiologist in the beginning of February, and will see about a loander

bone conduction aide at that point.

Thanks for telling me about --it's encouraging to hear about the

difference the BAHA had made. Did his BAER show improved bone conduction vs.

air conduction?

(mom to Evan, 17.5 months)

mmcdonald1220 wrote:

,

Evan's story sounds very familiar..... It also took a long time for

us to get information on our son 's hearing as well (he is 2

1/2 now and wears a BAHA). He failed numerous BAER screenings early

on and we finally were able to get two very thourough evalations

under sedation. We paired the evals with surgerys.

you mention that Evan is wearing hearing aides. May I ask what

type? Is his hearing loss partly or fully conductive? Is the loss

mixed? Has he tried the BAHA?

(mom to 2 1/2 CHARGE, 6 years, wife to Pat)

>

> Rita,

>

> It took us a long time to figure out Evan's true level of hearing-

-in fact, we still don't have a great baseline, and he's 17 1/2

months old now! Part of the reason it took so long was that he had

many different issues, most of which had the potential to be more

life-threatening or life-altering than hearing loss...so the hearing

testing was placed on the back burner for awhile.

>

> Evan failed 2 hearing screenings, and then failed a BAER while he

was an inpatient all before he was 4 months old. Because his ears

were so small and the left canal was mis-shapen, the validity of the

results was questioned (it showed severe loss bilaterally, with

possible improvement by bone conduction). At 6 months he failed

another BAER as an outpatient--this time he wouldn't stay asleep.

Because he also had frequent ear infections and pretty much constant

fluid in his ears, his ENT put tubes in his ears and they repeated

the BAER under general anesthetic after the placement of the tubes to

get a good " baseline. " This didn't take place until Evan was 11

months (it was initially scheduled at 8 months, but we had to cancel

because of a respiratory infection). This BAER showed severe to

profound loss in the right ear and profound loss in the left ear. We

finally got his first pair of hearing aides just before his first

birthday. He has been tested behaviorally

> once on the left side with the hearing aide, and he had improved

with amplification to moderate loss (the right ear had an infection,

so we couldn't test it!). His ENT would like to get another BAER

under anesthetic with and w/o hearing aides, to see what he can hear

now that the tubes have been in for awhile and his ears are

completely free of fluid.

>

> So it takes a while to determine what the level of hearing is in

a baby. We were always advised to treat Evan as if he could hear,

talking and interacting with him, using lots of gestures and facial

expression. It's never too early (or too late) to start signing

either, and even if Caitlyn's hearing turns out to be OK it's not

like it would be time wasted. Lots of parents of hearing children

teach their kids sign.

>

> (mom to Evan, 17.5 months)

>

>

> hi do i read wright that a 13 month old charge baBY CAN SIGN

MAMMY

> DADDY I HAVE A1 YEAR OLD GRAND DAUGHTER WHO has not even had a

> hearing sorted yet they not sure if she can hear or not never mind

> sign lang tell me more please rita gran of caitlyn 1 year old

charge

>

>

>

> __________________________________________________

>

[Guest guest]

,

'first hearing eval indicated bilateral conductive hearing

loss. Moderate on one side and profound on the other side. It was my

understanding after the first test that the involvement was strictly

conductive with no sensoneural/coclear issue. Then with his temporal

bone CT scan the ENT indicated other than slightly more narrowed and

curved passages she could not see any abnormal malformations. (Of

course there is something causing the loss..) When he had his second

set of tubes placed at another hospital I asked the audiology

department to retest him. (I always had that nagging fear that it

could be sensoneural, that they might have missed something and we

in turn might not be providing him with the optimal chance to

hear...) Anyway, the second test did reveal a small sensoneural loss

on one side. However, both audiologists agreed that due to the

majority of his loss being conductive that the BAHA still appears to

be the best choice for him.

So far, he has responded well with the behavorial testing with the

BAHA scoring boarderline normal hearing. But it seems so hard when

they are little and not able to clearly vocalize/communicate what

they are hearing... is making a lot of sounds and he repeats

and says a word or two every so often...but he is not consistant.

We believe at this point he may be dyspraxic. We have been trying to

sign with him in order to provide as many avenues as possible for him

to communicate. He is progressing slowly. (But is a fantatic and

fiesty little guy.) 's post regarding Aubrie's hearing and

progress has really been encouraging. I am very happy for them. You

really seem to be on top of things with Evan and doing an excellent

job with asking the right questions. It's wonderful news that he is

done with his surgeries for now and I understand your hesitation with

putting him under anesthesia. I feel the same way. We have ear tubes

scheduled again and I am trying to group it with dental x-rays,

cleaing, and sealing his back teeth. I refuse to put him under just

for the dental and have been trying to get both Doc's to scheudle

everything togeather for over two months now. It's very fustrating.

(I had never asked about the possiblility of an ossiculoplasty for

but I will add it to my list for future discussion with our

ENT.) I did not have any familiarity with any type of aides other

than the BAHA and am always interested in learning more. has

had his BAHA for about a year. It is my understanding it will not be

implanted until he is 5 years old. I know one of the ENT's we

consulted with indicated they are doing implantations in Europe as

early as 1 or 2 years of age. But, I had never checked to confirm

specifics on this. Best wishes with Evan's ENT appointment in the

begining of February. Please keep us updated. Wishing you your

family a happy,healthy new year!

- (mom to 2 1/2 CHARGE, 6 years, wife to Pat)

New York

> >

> > Rita,

> >

> > It took us a long time to figure out Evan's true level of hearing-

> -in fact, we still don't have a great baseline, and he's 17 1/2

> months old now! Part of the reason it took so long was that he had

> many different issues, most of which had the potential to be more

> life-threatening or life-altering than hearing loss...so the

hearing

> testing was placed on the back burner for awhile.

> >

> > Evan failed 2 hearing screenings, and then failed a BAER while he

> was an inpatient all before he was 4 months old. Because his ears

> were so small and the left canal was mis-shapen, the validity of

the

> results was questioned (it showed severe loss bilaterally, with

> possible improvement by bone conduction). At 6 months he failed

> another BAER as an outpatient--this time he wouldn't stay asleep.

> Because he also had frequent ear infections and pretty much

constant

> fluid in his ears, his ENT put tubes in his ears and they repeated

> the BAER under general anesthetic after the placement of the tubes

to

> get a good " baseline. " This didn't take place until Evan was 11

> months (it was initially scheduled at 8 months, but we had to

cancel

> because of a respiratory infection). This BAER showed severe to

> profound loss in the right ear and profound loss in the left ear.

We

> finally got his first pair of hearing aides just before his first

> birthday. He has been tested behaviorally

> > once on the left side with the hearing aide, and he had improved

> with amplification to moderate loss (the right ear had an

infection,

> so we couldn't test it!). His ENT would like to get another BAER

> under anesthetic with and w/o hearing aides, to see what he can

hear

> now that the tubes have been in for awhile and his ears are

> completely free of fluid.

> >

> > So it takes a while to determine what the level of hearing is in

> a baby. We were always advised to treat Evan as if he could hear,

> talking and interacting with him, using lots of gestures and facial

> expression. It's never too early (or too late) to start signing

> either, and even if Caitlyn's hearing turns out to be OK it's not

> like it would be time wasted. Lots of parents of hearing children

> teach their kids sign.

> >

> > (mom to Evan, 17.5 months)

> >

> >

> > hi do i read wright that a 13 month old charge baBY CAN SIGN

> MAMMY

> > DADDY I HAVE A1 YEAR OLD GRAND DAUGHTER WHO has not even had a

> > hearing sorted yet they not sure if she can hear or not never

mind

> > sign lang tell me more please rita gran of caitlyn 1 year old

> charge

> >

> >

> >

> > __________________________________________________

> >

[Guest guest]

,

I saw your comment about the feedback and wanted to

mention this: Vinny started out with Oticon BTE aids.

They drove us absolutely crazy with the feedback.

Vinny repeatedly pulled them out and threw them, even

when they were taped in. He now wears the Starkey

Destiny 400 BTE aids. They automatically cancel out

feedback. They are amazing!! Now the only time Vinny

takes out his hearing aids is when it is too loud in

his environment (he kindly hands them to me one by

one) or when he is getting an ear infection. If the

BAHA doesn't pan out, I highly suggest looking into

these.

ina, mom to Luca (3) & Vinny (19 months w/ cHARgE)

--- Key Storrs wrote:

> Hi ,

>

> Thanks for the reply. Evan has standard behind

> the ear aides, that I believe are digital. They are

> only turned up about 1/3 of what he needs though,

> until his ear growth slows down enough we can get

> some good fitting ear molds that won't have so much

> feedback. In the past we have been able to pair his

> sedated hearing evals with other surgeries, but as

> of right now we're out of surgeries! So if we do

> another hearing test under anesthesia, it will be

> just for that purpose...and I'm not so sure if

> getting that " baseline " information is worth the

> risk.

>

> Evan's air and bone conduction have shown the same

> level of loss on his BAERs, so in theory a BAHA

> would not yeild any improvement. I have paid very

> careful attention to Michele's posts about Aubrie,

> and her improvement with a BAHA and with her recent

> surgery. About a month ago, my husband and I had a

> lengthy discussion with Evan's ENT about the

> possibility of him at some point having a surgery

> similar to Aubrie's (it's called an ossiculoplasty).

> I had already done some research about the

> procedure, and knew for a number of reasons Evan was

> not an ideal canditate. He reviewed Evan's temporal

> bone CT scan with us--there are numerous

> abnormalities throughout his hearing and vestibular

> system including multiple malformations and fusions

> of the hearing bones, a flattened cochlea, one set

> of the three semi-circular canals is missing

> bilaterally, and the facial nerve was not visualized

> on one side. He told us there because there were so

> many malformations, it was likely

> that there were abnormalities contributing to his

> hearing loss higher up in the pathway than the

> ossicles. But currently, there isn't a way to test

> that to find out. Also, because they can't see the

> facial nerve there would be a risk of damaging it

> further so he would have a total facial palsy on

> that side vs. just a partial.

>

> He was all for trying a bone conduction hearing

> aide though, and did say Evan would be a great

> candidate for a BAHA surgery. We have an

> appointment with Evan's audiologist in the beginning

> of February, and will see about a loander bone

> conduction aide at that point.

>

> Thanks for telling me about --it's

> encouraging to hear about the difference the BAHA

> had made. Did his BAER show improved bone

> conduction vs. air conduction?

>

> (mom to Evan, 17.5 months)

>

> mmcdonald1220 wrote:

> ,

>

> Evan's story sounds very familiar..... It also took

> a long time for

> us to get information on our son 's hearing

> as well (he is 2

> 1/2 now and wears a BAHA). He failed numerous BAER

> screenings early

> on and we finally were able to get two very

> thourough evalations

> under sedation. We paired the evals with surgerys.

>

> you mention that Evan is wearing hearing

> aides. May I ask what

> type? Is his hearing loss partly or fully

> conductive? Is the loss

> mixed? Has he tried the BAHA?

>

> (mom to 2 1/2 CHARGE, 6 years,

> wife to Pat)

>

>

> >

> > Rita,

> >

> > It took us a long time to figure out Evan's true

> level of hearing-

> -in fact, we still don't have a great baseline, and

> he's 17 1/2

> months old now! Part of the reason it took so long

> was that he had

> many different issues, most of which had the

> potential to be more

> life-threatening or life-altering than hearing

> loss...so the hearing

> testing was placed on the back burner for awhile.

> >

> > Evan failed 2 hearing screenings, and then failed

> a BAER while he

> was an inpatient all before he was 4 months old.

> Because his ears

> were so small and the left canal was mis-shapen, the

> validity of the

> results was questioned (it showed severe loss

> bilaterally, with

> possible improvement by bone conduction). At 6

> months he failed

> another BAER as an outpatient--this time he wouldn't

> stay asleep.

> Because he also had frequent ear infections and

> pretty much constant

> fluid in his ears, his ENT put tubes in his ears and

> they repeated

> the BAER under general anesthetic after the

> placement of the tubes to

> get a good " baseline. " This didn't take place until

> Evan was 11

> months (it was initially scheduled at 8 months, but

> we had to cancel

> because of a respiratory infection). This BAER

> showed severe to

> profound loss in the right ear and profound loss in

> the left ear. We

> finally got his first pair of hearing aides just

> before his first

> birthday. He has been tested behaviorally

> > once on the left side with the hearing aide, and

> he had improved

> with amplification to moderate loss (the right ear

> had an infection,

> so we couldn't test it!). His ENT would like to get

> another BAER

> under anesthetic with and w/o hearing aides, to see

> what he can hear

> now that the tubes have been in for awhile and his

> ears are

> completely free of fluid.

> >

> > So it takes a while to determine what the level of

> hearing is in

> a baby. We were always advised to treat Evan as if

> he could hear,

> talking and interacting with him, using lots of

> gestures and facial

> expression. It's never too early (or too late) to

> start signing

> either, and even if Caitlyn's hearing turns out to

> be OK it's not

> like it would be time wasted. Lots of parents of

> hearing children

> teach their kids sign.

> >

> > (mom to Evan, 17.5 months)

> >

> >

> > hi do i read wright that a 13 month old charge

> baBY CAN SIGN

> MAMMY

> > DADDY I HAVE A1 YEAR OLD GRAND DAUGHTER WHO has

> not even had a

> > hearing sorted yet they not sure if she can hear

> or not never mind

> > sign lang tell me more please rita gran of caitlyn

> 1 year old

> charge

> >

> >

> >

> > __________________________________________________

> >