Re: I need some Advise or Opinions

[Guest guest]

>you can actually see the fit is not right.

What color is the goop they're using? If it's pink goop, it is somewhat

prone to shrinkage (often had problems with JD's) and his audiologist

switched to a blue putty like stuff (reminded me of epoxy). She said this

type was more expensive so they didn't like to use it very often, but it

doesn't shrink as much as the other and for problem fits, usually gives

better results. Also, I'm curious, are the earmolds they're making hard or

soft?

Kay

[Guest guest]

Hi Colleen,

I'm a little confused here. You wrote:

>I have an 8

> month old daughter that has severe to moderate conductive hearing loss

> in both ears. She fails at 70dB in both ears.

> After having the other brainstems done that

> were not consistent, they diagnosed her February 19, with a conducted

> hearing loss only. We have been told everything. Since the 19th she

> has been fitted 4 times for ear molds and none of them can be used.

Uh, with a conductive loss what is the point of earmolds? Conductive means

something is blocking the sound in the ear canal from getting to the

cochlea. Usually a bone conducting aid is all that is used, and I am sure

that is why she responds better to that type. Feedback would of course be a

problem. There is no where for the sound to go with a conductive loss. It

is going to be bouncing back right to the hearing aid!!

Earmolds can be a real pain to get a good fit on. I agree with you that you

should try a new audie, as if your little girl has a conductive loss, it may

be worth investigating what is causing it, and if possible, fix it

surgically. Earmold companies can also vary, and trying a new company is

always worth it too. Infants often need new ear molds every few months.

But first I would check into other bone conduction aids, further investigate

this conductive loss, and see what can be done.

Well those are my opinions. I'm not an audie, just a mom, who reads too

much, and thinks too much. Where are you at?

Sherry Zeilstra

Ferndale, WA

[Guest guest]

Dave and Kay

Thanks for the quick response. They have always used the blue putty. I would

say

that the ear molds they are making are semi-hard. I was say it's like a

silicone

material or something like that. They are not real soft. Is there a difference

in

the ear mold material, they use also? Are there different types, of ear molds?

The

audie claims they are having such a hard time due to her ears don't have good

lines

to hold them in, and her ears are small. I don't feel that her ears are small.

And never really understood that statement, because some children are aided at 8

weeks and they would be small also! Unless she means something else.

Thanks again

Colleen

P.S. Hope your feeling better.

Dave & Kay wrote:

>

>

> >you can actually see the fit is not right.

>

> What color is the goop they're using? If it's pink goop, it is somewhat

> prone to shrinkage (often had problems with JD's) and his audiologist

> switched to a blue putty like stuff (reminded me of epoxy). She said this

> type was more expensive so they didn't like to use it very often, but it

> doesn't shrink as much as the other and for problem fits, usually gives

> better results. Also, I'm curious, are the earmolds they're making hard or

> soft?

>

> Kay

>

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[Guest guest]

The

>audie claims they are having such a hard time due to her ears don't have

good lines

>to hold them in, and her ears are small. I don't feel that her ears are

small.

>And never really understood that statement, because some children are aided

at 8

>weeks and they would be small also! Unless she means something else.

>

Sounds like this audie does not have much experience fitting infant ears.

ALL infants have small, soft ears in comparison to grown-ups! We had teensy

little ear molds to start with (I saved the first ones, they were so small

and cute) Also a baby will need new molds amost constantly because they are

growing so fast -it slows down after a while. I don't know anything about

conductive loss, but it seems to me you would not have a BTE for that? the

conductive aids work in a different manner. I would get a second opinion

and hopefully the new audie can explain these things in detail to you.

Good luck!

[Guest guest]

Sherry Zeilstra wrote:

>

>

> Hi Colleen,

>

> I'm a little confused here. You wrote:

> >I have an 8

> > month old daughter that has severe to moderate conductive hearing loss

> > in both ears.

> Uh, with a conductive loss what is the point of earmolds? Conductive means

> something is blocking the sound in the ear canal from getting to the

> cochlea. Usually a bone conducting aid is all that is used, and I am sure

> that is why she responds better to that type. Feedback would of course be a

> problem. There is no where for the sound to go with a conductive loss. It

> is going to be bouncing back right to the hearing aid!!

I agree with everything that Sherry said. Conductive loss requires bone

conduction

aids. I too am not an audiologist, but have never heard of using regular

hearing

aids for a conductive loss. For a mixed loss, yes, since you must over come the

standard hearing loss and the conductive overlay. But I've never heard of using

a

regular aid to compensate for conductive alone, since it doesn't overcome the

real

problem, the fact that there is fluid or something functional preventing the

sound

from making it through. Do they say if the conductive loss is due to fluid...or

what?

[Guest guest]

Hi Sherry:

Thanks for your reply, I am more than a little confused at this point also. But

am

really glad I have this listserv to turn too for advise.

We were told by two audiologist from Children's Hospital of Philadelphia that

the

behind the ear aids are better, even when a child has a conductive loss. That

the

sound going in with the behind the ear aids are better all the way around. I

did

state if she only has a conductive loss why would you use them. They stated

they

try to use them on everyone. After the first Three Brainstems, since the first

three stated different things, from profound to severe, I was told that she

would

be a candidate for a CI and that they did not feel that hearing aids would

benefit

her, and that they felt she had a neuogricial sensory hearing loss. But with

the

inconsciencey of the brainstems they would not aid her until they knew for sure.

I demanded they do something else rather than make me wait another 8 weeks for

another brainstem. They did a cat scan, which showed the conducted bones were

malformed and that the cochlea appeared normal, we were also told there is not

enough 7 nerve cells, and that the stapes is missing. She also had tubes placed

in

her ears at 2 months of age, due to repeat ear infections. Her second and

fourth

brainstem should the same thing. We were told at the time of the second one

that

they did not feel that the results were accurate due to the severe infection

that

was in her ears at the time the tubes were put in. We live right outside

Philadelphia in Delaware County. The reason we stayed with CHOP this long is

because we were told they were the best in ideology and we were just having bad

luck. I was very uncomfortable with the audie on my last visit to her, due to

she

never gave me or mentioned to me about a hearing aid care kit, when they tried

to

fit the 3 set of ear molds. She lent us the aids and told me to go home and

work

with them and they may work. I remembered reading about how you have to check

the

aids every day etc. But she never mentioned any of that to me. If I never read

it

I would of not of known there was such a thing. I phoned early intervention

staff , when I got home and asked them were I could purchase one at and they

gave

it too me. Thanks again for your response. How much do ear molds cost. Ours

covered by Medical assistance.

Colleen

Sherry Zeilstra wrote:

>

>

> Hi Colleen,

>

> I'm a little confused here. You wrote:

> >I have an 8

> > month old daughter that has severe to moderate conductive hearing loss

> > in both ears. She fails at 70dB in both ears.

> > After having the other brainstems done that

> > were not consistent, they diagnosed her February 19, with a conducted

> > hearing loss only. We have been told everything. Since the 19th she

> > has been fitted 4 times for ear molds and none of them can be used.

>

> Uh, with a conductive loss what is the point of earmolds? Conductive means

> something is blocking the sound in the ear canal from getting to the

> cochlea. Usually a bone conducting aid is all that is used, and I am sure

> that is why she responds better to that type. Feedback would of course be a

> problem. There is no where for the sound to go with a conductive loss. It

> is going to be bouncing back right to the hearing aid!!

>

> Earmolds can be a real pain to get a good fit on. I agree with you that you

> should try a new audie, as if your little girl has a conductive loss, it may

> be worth investigating what is causing it, and if possible, fix it

> surgically. Earmold companies can also vary, and trying a new company is

> always worth it too. Infants often need new ear molds every few months.

> But first I would check into other bone conduction aids, further investigate

> this conductive loss, and see what can be done.

>

> Well those are my opinions. I'm not an audie, just a mom, who reads too

> much, and thinks too much. Where are you at?

>

> Sherry Zeilstra

> Ferndale, WA

>

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

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[Guest guest]

" J. Semesky " wrote:

>

>

> Sherry Zeilstra wrote:

>

> >

> >

> > Hi Colleen,

> >

> > I'm a little confused here. You wrote:

> > >I have an 8

> > > month old daughter that has severe to moderate conductive hearing loss

> > > in both ears.

>

> > Uh, with a conductive loss what is the point of earmolds? Conductive means

> > something is blocking the sound in the ear canal from getting to the

> > cochlea. Usually a bone conducting aid is all that is used, and I am sure

> > that is why she responds better to that type. Feedback would of course be a

> > problem. There is no where for the sound to go with a conductive loss. It

> > is going to be bouncing back right to the hearing aid!!

>

> I agree with everything that Sherry said. Conductive loss requires bone

conduction

> aids. I too am not an audiologist, but have never heard of using regular

hearing

> aids for a conductive loss. For a mixed loss, yes, since you must over come

the

> standard hearing loss and the conductive overlay. But I've never heard of

using a

> regular aid to compensate for conductive alone, since it doesn't overcome the

real

> problem, the fact that there is fluid or something functional preventing the

sound

> from making it through. Do they say if the conductive loss is due to

fluid...or

> what?

The cat scan showed that the conducted bones were malformed and the stapes was

missing. They also stated there was not enough 7th nerve cells. There original

thought she had a mixed loss up until the last brainstem. She has tubes that

were

placed in her ears at 2 months of age, due to fluid and infection and she still

gets

alot of ear infections even with the tubes. I would like to thank you and

everyone

else that has made comments or suggestions, I really appreciate it.

Thanks again

Colleen

>

>

>

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[Guest guest]

Hi Colleen,

>

> The cat scan showed that the conducted bones were malformed and

> the stapes was

> missing. They also stated there was not enough 7th nerve cells.

> There original

> thought she had a mixed loss up until the last brainstem. She has

> tubes that were

> placed in her ears at 2 months of age, due to fluid and infection

> and she still gets

> alot of ear infections even with the tubes. I would like to

> thank you and everyone

> else that has made comments or suggestions, I really appreciate it.

Given what you just wrote, I would consult with a good ENT to discuss the

conductive loss issues, and the 7th cranial nerve issue. If the stapes is

missing that will affect how sound is conducted to the cochlea. Yes, there

are times when a standard type of hearing aid is used to get more sound

through, but you can also run into risk of further damage to the hairs that

line the cochlea, especially the ones at the beginning. Those hairs have a

special function. They filter sounds, try to keep loud sounds from being to

loud, and try to amplify soft sounds. Many of our kids have this type of

hearing loss, which is why we try to get hearing aids that have wide dynamic

compression on them, such as Resound, Multifocus, and a few others. If you

continually bombard those sensitive hairs with loud sound, you damage them.

This is one reason I think linear aids(those that amplify everything

equally) suck for kids. Fluid in the ears can cause quite a drop in hearing

itself. I would get on an ENT about getting that fluid issue resolved.

Kids with hearing loss cannot afford to lose anymore hearing due to

infections and fluids. Have they given you any of the new cortisone nasal

sprays to use? used that the last time he had a severe cold and fluid,

and boy what a difference it made in only two days of use! His hearing

improved radically. He had been insisting I sign to him, then he told me to

stop as he could hear me again.

I have used Children's Hospital here in Seattle, and was more than

disappointed in there fitting of hearing aids, and the attitude of the CI

staff. I was actually told by them that the reason never had a CT of

his cochlea was that his hearing wasn't that bad. When we finally got one

done this past year, we discovered that has enlarged vestibular canals,

and Mondini's malformation of the cochlea. That explained why his hearing

fluctuates, why it is progressive, and why he heard higher frequency sounds

better than low. Low frequencies are heard at the furthest reaches of the

cochlea. Would have been useful, in my opinion, to know this at his initial

hearing aid fittings. But then again, the audies around here I don't place

much faith in.

Good luck!

Sherry

Ferndale, WA

[Guest guest]

Hi Sally,

You wrote:

> I am continually

> frustrated that audiologists don't spend more time talking to parents

> about all the many, many options there are in terms of amplification!

You and many of us. A bunch of us parents put our heads together one day

and came up with this list, you would like it!

http://home1.gte.net/sherryze/wishlist.htm

Thanks for the information on your daughter's experience with bone

conduction and air.

Sherry

[Guest guest]

>I am continually

>frustrated that audiologists don't spend more time talking to parents

>about all the many, many options there are in terms of amplification!

This sounds all too familiar. There is a wonderful lady who has put together

a " Parent's Wish List for Audiologists " (it came about one day when a bunch

of us were sitting around venting our frustrations about audiologists.)

http://home1.gte.net/sherryze/wishlist.htm

Take a bow Sherry.

If I recall correctly, Sherry even said she was contacted by a couple of

groups interested in publishing it. How did that ever turn out?

Kay

[Guest guest]

There we go again Kay, thinking the same thing at precisely the same time!!

>

> >I am continually

> >frustrated that audiologists don't spend more time talking to parents

> >about all the many, many options there are in terms of amplification!

>

>

> This sounds all too familiar. There is a wonderful lady who has

> put together

> a " Parent's Wish List for Audiologists " (it came about one day

> when a bunch

> of us were sitting around venting our frustrations about audiologists.)

> http://home1.gte.net/sherryze/wishlist.htm

>

> Take a bow Sherry.

>

> If I recall correctly, Sherry even said she was contacted by a couple of

> groups interested in publishing it. How did that ever turn out?

You know, no one ever got back to me. Someone from ASHA contacted me, but I

suppose when she showed it to the higher ups they were no doubt offended.

Seems most think they do those things. Yeah, then why is it that all over

the country we all have had the same experiences?

Sherry

[Guest guest]

Hi Colleen-

My name is Sally and I have a nine year old daughter who is hearing

impaired. Like le, she has " other " issues (developmental delay,

short stature) and has been through genetics testing but has no

identified syndrome. As far as we know, her hearing loss is purely

conductive. She wore a bone conduction hearing aide for two years and

now wears air conduction aids w/ ear molds. If your daughter's hearing

loss is conductive and her small ears/canals can't support a mold (that

was our daughter's problem when she was young) you may want to ask about

the bone conduction hearing aid. It doesn't go in the ear so molds

aren't necessary. I don't think they are as easy to wear as the air

conduction aids but it is certainly better than not being amplified.

Let me know if you have any other questions and good luck,

Sally

___________________________________________________________________

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[Guest guest]

Hi -

About conductive losses and air conduction or BTEs. My daughter has a

conductive loss (assumed to be due to a fixation of the stapes) and she

switched from a bone conduction aide to ReSounds (BT4) this summer. As

far as we know her loss is purely conductive and she the air conduction

aids are SO very much better on so many levels (comfort, practicality and

most importantly, quality of sound) and her aided audiograms are better

with the air conduction v. the bone. She also has no problems wearing

them and she hated the bone conduction. However, when she was first

identified at 4 we were told her ears would not support molds (they were

so flaccid). I do not know if this was necessarily true, but we did not

know enough to ask at the time. Anyway, her air conduction aid ends up

acting like a bone conduction aid in that it is so powerful that the

middle ear system is bypassed and the inner ear directly stimulated.

Don't know if this helped or made people more confused. I am continually

frustrated that audiologists don't spend more time talking to parents

about all the many, many options there are in terms of amplification!

Thanks,

Sally

___________________________________________________________________

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[Guest guest]

>Thank you for the reference to the web site....a great site that I will

>enjoy exploring. The wish list is wonderfult and so beneficial. In

>addition to being a Mom of a HOH child, I am also a speech therapist and

>currently working with a preschooler with a suspected hearing

>impairment--reliving the frustration of sifting through the physician and

>audiologist information or lack there of. Your web sites are lifesavers!

Sherry and I do make a good team, don't we? I think when she volunteered to

do the IEP related stuff at her web site, she didn't quite know what she was

getting into. ;-) I have to say that I'm very proud of what she's

accomplished with her site and I'm very pleased to be able to call her my

friend. And if there's ever anything you need that you don't see on one of

the two sites, please let one of us know. Chances are we've got tons of info

on it and just haven't had a chance to add it yet.

Thanks for the pat on the back. It's nice to know that our efforts are

helping folks. Gives us that extra drive to keep going.

Kay

[Guest guest]

Sherry & Kay-

Thank you for the reference to the web site....a great site that I will

enjoy exploring. The wish list is wonderfult and so beneficial. In

addition to being a Mom of a HOH child, I am also a speech therapist and

currently working with a preschooler with a suspected hearing

impairment--reliving the frustration of sifting through the physician and

audiologist information or lack there of. Your web sites are lifesavers!

Thank you,

Sally

On Thu, 6 May 1999 15:41:24 -0700 " Sherry Zeilstra "

writes:

>

>

>Hi Sally,

>You wrote:

>> I am continually

>> frustrated that audiologists don't spend more time talking to

>parents

>> about all the many, many options there are in terms of

>amplification!

>

>You and many of us. A bunch of us parents put our heads together one

>day

>and came up with this list, you would like it!

>

>http://home1.gte.net/sherryze/wishlist.htm

>

>Thanks for the information on your daughter's experience with bone

>conduction and air.

>

>Sherry

>

>

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>Find your Star Wars list today!

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

>All messages posted to this list should be considered private and

>confidential.

___________________________________________________________________

You don't need to buy Internet access to use free Internet e-mail.

Get completely free e-mail from Juno at http://www.juno.com/getjuno.html

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[Guest guest]

Again I would like to thank all of you! I have posted things to other list and

never received hardly any information. My week has been horrible and keeps

getting worse. But I will say that I am very happy all of you that took the time

to

comment have, because it has given me new ways to approach this issue. I am

calling Dupont Institute in Delaware tomorrow, and checking into an ENT and

Audiologist. But my daughter has had a very bad cough and gagging and choking

for

10 days now. I have taken her to the Peds every single day last week and again

yesterday, and I am now told they think she has Pertussis (Whooping Cough).

She

was tested yesterday, but they claim now they really believe she has it, but it

takes 4 to 5 days for the results of the test, due to she has all the symptoms

of

it. They tested my 5 year old today, since he has been seen for a horrible

cough

for over a month now, and I have been told it's his asthma acting up, and

since

it's highly contagious and we are all on antibiotics, but all I can say is

whatever.

Sherry I made some comments below.

Sherry Zeilstra wrote:

>

>

> Hi Colleen,

> >

> > The cat scan showed that the conducted bones were malformed and

> > the stapes was

> > missing. They also stated there was not enough 7th nerve cells.

> > There original

> > thought she had a mixed loss up until the last brainstem. She has

> > tubes that were

> > placed in her ears at 2 months of age, due to fluid and infection

> > and she still gets

> > alot of ear infections even with the tubes. I would like to

> > thank you and everyone

> > else that has made comments or suggestions, I really appreciate it.

>

> Given what you just wrote, I would consult with a good ENT to discuss the

> conductive loss issues, and the 7th cranial nerve issue.

We were seeing one at CHOP and was told there was another one that was the best

and

switched to him. We were told that the 7th nerve issue was the facial nerves,

that

could of complicated the CI if it needed to be done. For the first six months

of

le's life we were told that she was a candidate for the CI and that

hearing

aids would not benefit her. So it was an issue when they thought that it was a

mixed hearing loss. But nothing has been mentioned since they changed to just a

conductive hearing loss. He did discuss with us different bone conduction aids

that could be surgically placed when she is 3 or 4 years old that were possible

options. But stated nothing was written in stone, that they may not be able to

be

performed, that it all depended on what was missing and malformed. I really

liked

this doctor the first time I saw him, but just saw him again 2 weeks ago, and

explained my concern on the amount of ear infections she has had and explained

the

problem with the ear molds and he didn't seem interested in listening about it.

> If the stapes is

> missing that will affect how sound is conducted to the cochlea. Yes, there

> are times when a standard type of hearing aid is used to get more sound

> through, but you can also run into risk of further damage to the hairs that

> line the cochlea, especially the ones at the beginning. Those hairs have a

> special function. They filter sounds, try to keep loud sounds from being to

> loud, and try to amplify soft sounds. Many of our kids have this type of

> hearing loss, which is why we try to get hearing aids that have wide dynamic

> compression on them, such as Resound, Multifocus, and a few others. If you

> continually bombard those sensitive hairs with loud sound, you damage them.

> This is one reason I think linear aids(those that amplify everything

> equally) suck for kids. Fluid in the ears can cause quite a drop in hearing

> itself. I would get on an ENT about getting that fluid issue resolved.

> Kids with hearing loss cannot afford to lose anymore hearing due to

> infections and fluids.

She had tubes placed at 2 months of age, due to fluid. I have read alot on ear

infections and am very concerned about that due to it could cause more damage

than

what is already there. The reason they did not aid her was due to the

inconsistency of the brainstems, they stated that over amplification could do

more

damage that is why we were patient up until this point. They have done

typanograms

and claim that there is no fluid behind the tubes. But I constantly hear that

the

right tube was placement is not straight and they can't see past it.(What does

that

mean? they came nothing) She also is extremely sensitive to the right ear, when

they did the ABR's and place the probes in she would scream with pain, when they

fitted her for every ear mold same thing happened a very painful cry.. I have

mentioned this many many times and they say it's nothing. She needed to be

sedated

three times the last ABR do to she would scream with just the placement of the

probe before starting the test. All the audie says is that I see what you mean,

I

don't know why she is so sensitive. The doctor claims it's fine.

> Have they given you any of the new cortisone nasal

> sprays to use?

NO

> used that the last time he had a severe cold and fluid,

> and boy what a difference it made in only two days of use! His hearing

> improved radically. He had been insisting I sign to him, then he told me to

> stop as he could hear me again.

That's great, I will have to check into that.

>

>

> I have used Children's Hospital here in Seattle, and was more than

> disappointed in there fitting of hearing aids, and the attitude of the CI

> staff. I was actually told by them that the reason never had a CT of

> his cochlea was that his hearing wasn't that bad. When we finally got one

> done this past year, we discovered that has enlarged vestibular canals,

> and Mondini's malformation of the cochlea. That explained why his hearing

> fluctuates, why it is progressive, and why he heard higher frequency sounds

> better than low. Low frequencies are heard at the furthest reaches of the

> cochlea. Would have been useful, in my opinion, to know this at his initial

> hearing aid fittings. But then again, the audies around here I don't place

> much faith in.

I know the feeling too well , but it's just not with audies. We live at the

doctors and never seem to get anywhere. I do speak up and demand things, but I

think we are just a number. It's very frustrating. Even with what happen

yesterday, go to the peds for 6 days straight because we were so scared

something

would happen and now its Pretussis. Why didn't they think of that 9 Days ago!.

Thanks Sherry! Colleen

Sally: Chop did lend us a bone conduction aid that we are using all the time

now,

they just would rather get the behind ear aids on her. After the third set of

ear

molds did not fit I was alittle upset and they said they would lend us a bone

conduction aid until they resolved the ear mold problem, so she is using

something

only because I wasn't a happy camper. She does seem to respond to us, but not

as

well as she did with the behind the ear aids on her. She actually turned her

head

to find where the sound was coming from with the behind the ear aids, but then

the

feedback started and we could not stop it. The doctor recommended a bone

conduction aid, but the two audies, felt that the behind the ear aids were

better

for her. She has very narrow ear canals, but no one ever explained to me that

they

may not be able to fit her due to her ears being small. No one ever tried

Otoferm,

Chop didn't try anything to try to make them fit better, the early intervention

team tried everything, and nothing worked, but they never tried Otoferm. Chop

never even explained about the care kit or anything. Sally thanks for sharing

your

story with me, I feel alittle better it's not just my childs ear molds that are

a

problem. Thanks again Colleen

P.S. Hopefully there is not too many typing mistakes but I am exhausted, I was

up

all night with her. Everyone thanks alot.

>

>

> Good luck!

> Sherry

> Ferndale, WA

>

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[Guest guest]

Sherry Zeilstra wrote:

>

>

> Hi Sally,

> You wrote:

> > I am continually

> > frustrated that audiologists don't spend more time talking to parents

> > about all the many, many options there are in terms of amplification!

>

> You and many of us. A bunch of us parents put our heads together one day

> and came up with this list, you would like it!

>

> http://home1.gte.net/sherryze/wishlist.htm

Great Web Site. I had to smile it's so true. Thanks for sharing it with us.

Colleen

>

>

> Thanks for the information on your daughter's experience with bone

> conduction and air.

>

> Sherry

>

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[Guest guest]

Hello!!

>

> >Thank you for the reference to the web site....a great site that I will

> >enjoy exploring. The wish list is wonderfult and so beneficial. In

> >addition to being a Mom of a HOH child, I am also a speech therapist and

> >currently working with a preschooler with a suspected hearing

> >impairment--reliving the frustration of sifting through the physician and

> >audiologist information or lack there of. Your web sites are lifesavers!

Thanks so much! We were in the same boat initially, and just started saving

all these links, and thought why not stick them where it's easier to find

them for all.

> Sherry and I do make a good team, don't we? I think when she

> volunteered to

> do the IEP related stuff at her web site, she didn't quite know

> what she was

> getting into. ;-) I have to say that I'm very proud of what she's

> accomplished with her site and I'm very pleased to be able to call her my

> friend. And if there's ever anything you need that you don't see on one of

> the two sites, please let one of us know. Chances are we've got

> tons of info

> on it and just haven't had a chance to add it yet.

>

> Thanks for the pat on the back. It's nice to know that our efforts are

> helping folks. Gives us that extra drive to keep going.

I second everything Kay said. I think we compliment each other's site very

well, without too many duplicates. I get mail sometimes from people who

think I should have more on communication options, but If they followed the

links to Kay's site, they would see why I keep just a few.

I am happy to be of help to you all.

Sherry

[Guest guest]

good Morning Colleen,

Sounds like your week has been far too hectic.

> I have taken her to the Peds every single day last

> week and again

> yesterday, and I am now told they think she has Pertussis

> (Whooping Cough). She

> was tested yesterday, but they claim now they really believe she

> has it,

Take all of those antibiotics, and get some rest.

>

> We were seeing one at CHOP and was told there was another one

> that was the best and

> switched to him. We were told that the 7th nerve issue was the

> facial nerves, that

> could of complicated the CI if it needed to be done.

I haven't heard of this. The facial nerves are generally out of the way of

the implant. While I'm sure it's a consideration, it shouldn't be too big a

probem for CI. Kay? You have any information on this area?

> But stated nothing was written in stone, that they may

> not be able to be

> performed, that it all depended on what was missing and

> malformed.

This is soo true. Things are always changing, and your daughter is still a

wee one and growing.

>

>

>The reason they did not aid her was due to the

> inconsistency of the brainstems, they stated that over

> amplification could do more

> damage that is why we were patient up until this point.

Well, that's refreshing to hear. I think there are some of us who know our

kids have been overamplified and many are underamplified.

>They have

> done typanograms

> and claim that there is no fluid behind the tubes. But I

> constantly hear that the

> right tube was placement is not straight and they can't see past

> it.(What does that

> mean? they came nothing)

I don't know too much about tubes. That is one area where and

have been lucky. They've had only a couple of mild infections since birth.

> She also is extremely sensitive to the

> right ear, when

> they did the ABR's and place the probes in she would scream with

> pain, when they

> fitted her for every ear mold same thing happened a very painful

> cry..

This doesn't seem right to me. Are they sure the right tube isn't so out of

place it is causing the pain and sensitivity. It would be awfully hard to

get a good fitting earmold if they are unable to make sure the impression

material is fully in.

> The doctor claims it's fine.

Isn't this just typical. He wouldn't stand for that if it was his child.

Find a new one.

>

> I know the feeling too well , but it's just not with audies. We

> live at the

> doctors and never seem to get anywhere. I do speak up and demand

> things, but I

> think we are just a number. It's very frustrating.

Well, it's taken me six years to get a diagnosis on as to why he can't

hear. It took over 3 years to get appropriate amplification on him, it took

nearly 3 years to get good audiograms done, I could go on and on. Just keep

pushing, and looking for a doctor or center that is willing to work with

you, not against you. Find people who will listen, they are out there, just

hard to find.

Ear Molds cost around $25-50 each, but as Kay said you will be able to keep

at it until the desired out come is reached. Don't worry about Medicaid

paying for them, they will keep doing that, and generally don't have one

company over another for molds, unlike hearing aids.

I think Unitron is linear, but send the model of it along if you have it.

I'll check and see what it is. it could be set too high also, which causes

feedback.

Talk to you soon

Sherry

[Guest guest]

<< This sounds all too familiar. There is a wonderful lady who has put

together

a " Parent's Wish List for Audiologists " (it came about one day when a bunch

of us were sitting around venting our frustrations about audiologists.)

http://home1.gte.net/sherryze/wishlist.htm

Take a bow Sherry.

>>

Amen!

I made a copy and gave it to the Audiologist at the University. She loved it!

She's a real child advocate and made copies to give to her students in Aural

Rehab!

Next year she will be working for the public schools. She has a lot of

disagreements with SLP's and teacher's. Told me of a teacher who refused to

put on the transmitter for the FM and finally the child went over and gave it

to the teacher to put on. All she did was put it aside! Fortunately, it was

witnessed by an Aural Rehab student and a complaint is in the making, since

it is written in the IEP.

Ruth

[Guest guest]

We were told that the 7th nerve issue was the

>> facial nerves, that

>> could of complicated the CI if it needed to be done.

>

>I haven't heard of this. The facial nerves are generally out of the way of

>the implant. While I'm sure it's a consideration, it shouldn't be too big

a

>probem for CI. Kay? You have any information on this area?

Acutally the facial nerves are in the general area which is why facial

paralysis (usually temporary) can be a complication of CI implantation. This

is from Cochlear Corp's Surgeon's Guide for the C124M:

Open the facial recess in the usual fashion. The horizontal canal and short

process of the incus should be clearly visualised. Identify the facial

nerve, but do not expose it. The chorda tympani nerve can almost always be

preserved, but damage may occur when excessive bone is left on the anterior

surface of the facial nerve.

From http://www.eaent.com/cochlear/cochlear_effects.html :

6) The most feared complicaton of cochlear implantation is damage to the

facial nerve, which is the nerve which moves the face. When damaged by heat,

the nerve will often recover its normal function after several weeks. If the

nerve is transected, however, the face on that side will never function as

well as it did pre-operatively. This is a rare complication, but its

occurence is extremely disappointing to the family and the surgeon.

(Whenever I read this I always have the urge to say, " Duh! " )

>>But I

>> constantly hear that the

>> right tube was placement is not straight and they can't see past

>> it.(What does that

>> mean? they came nothing)

We've talked about this before on another list, but I just can't visualize

this, or how it could have happened. Picture the walls of a balloon with a

grommet or eyelet in it (which is not an unreasonable comparison). I just

can't see how the darned thing can be in there crooked. Obviously it is

possible, since it is in your daughter, but I just can't picture how or why.

The only thing I can possibly see causing it is maybe something pushing on

it from the other side holding it in a crooked position. However, I'm

certainly not an expert or an ENT. What little I know about tubes is from

when my son had them.

>> She also is extremely sensitive to the

>> right ear, when

>> they did the ABR's and place the probes in she would scream with

>> pain, when they

>> fitted her for every ear mold same thing happened a very painful

>> cry..

>

>This doesn't seem right to me. Are they sure the right tube isn't so out

of

>place it is causing the pain and sensitivity. It would be awfully hard to

>get a good fitting earmold if they are unable to make sure the impression

>material is fully in.

This really upsets me. I don't see any reason for it. The necessity of

getting a good impression alone should justify redoing the tube. The fact

that it's causing pain for your daughter makes it even more so. My son's

tubes were causing him pain (for another reason) and it took me 8 doctors

before I found one who would listen to me and found the cause. This was one

of those times (in addition to trying to have his hearing loss diagnosed)

where I got that old pat on the back routine. I can tell you that during one

of these times I came darned close to decking a Doc and ending up in

jail...but I'm getting off track here. What I want to say is when my son had

his ABR (oh so many years ago) they didn't have the ear probes then, they

used headphones. What I'm wondering is if the ear probes cause her so much

pain, why can't they use headphones?

I'm also beginning to wonder if maybe the cause of poor fitting earmolds is

because they're not putting the impression material far enough in. When they

pulled out the impression material, how long was the canal? You should have

been able to see a distinct crooked tube looking appendage on the material,

I'm thinking a little shorter than the joint on the end of your finger. If

the material isn't going in far enough, you won't be able to get a good seal

because every time your daughter moves her mouth, the ear canal is going to

slightly change shape and if there's not enough to hold it in, it will

loosen.

Kay

[Guest guest]

Hi Colleen,

I can relate totally with what you are going thru, My daughter was fitted

with aids at 8mths. too. Although I have been told that I have the most

experienced and best mold maker ( due to retire soon ) Pete Kellar at Union

Hearing Aids in Toronto, Canada.I have been thru molds that only last a

month or two, We used a product called " OTOEASE " (Westone Labs. Inc) applied

to the molds before putting them in the ears it seems to slip in better but

doesn't stop all the whining.... The only thing I can suggest is that we

have all been there..... Persevere ....You will get thru it and your little

doll will be better for it. Don't be afraid to just pull them out when you

have had enough. Try again later.. Kym ( mommy to Implant May 06 99)

I need some Advise or Opinions

>

>

>Hello! My name is Colleen Guth, I am new to this list. I live in

>Glenolden, Pa, which is right outside of Philadelphia. I have an 8

>month old daughter that has severe to moderate conductive hearing loss

>in both ears. She fails at 70dB in both ears. We are using Total Means

>of Communication with her, with our emphasis is on the Oral approach.

>We are enrolled in the Clinic, she receives Early

>Intervention for Signs, Speech,and Oral & speech, she also receives OT

>and PT services. My daughters name is le, she was born seven weeks

>early weighing 4lbs 8ozs. Today at 8 months weighs 18 pounds. (not a

>preemie any more) . She has other issues besides hearing loss. She is

>blind in her left eye, with a rare eye disorder called s Anomaly,

>she has sub aortic stensios, developmental delays, scraple dimple on the

>bottom of her spine, T5 vibrate is triangle and not square, she has

>severe reflux, and last but not least is suspected to have asthma. Has

>been through Genetics twice and no syndromes found.

>This is what I need some help with. le was diagnosed at birth

>with profound deafness. After having the other brainstems done that

>were not consistent, they diagnosed her February 19, with a conducted

>hearing loss only. We have been told everything. Since the 19th she

>has been fitted 4 times for ear molds and none of them can be used.

>Feedback is horrible, plus they don't stay in we tried everything.

>Caps, huggies, tape etc. you can actually see the fit is not right. I

>know she has narrow ear canals, but I feel I have been more than patient

>with CHOP who is making the impressions, and just can't understand, why

>this keeps happening. They lent us both behind the ear aids and a bone

>conduction aid. She responses to the bone conduction aid, but her

>audie, felt that the behind the ear aids would be better for her, since

>she is constantly pulling off the bone conduction aid and it falls off

>if she is moving or squirming around alot. We were able to keep one set

>of ear molds in for a few minutes, before the feedback became to much,

>and when the audie said something from the side of her, she turned her

>head and looked at her, as if she heard it well. I do not know that for

>a fact. But of course it was very reassuring, she has never done that

>with the bone conduction aid on. She does respond but nothing like that

>day. So I am so anxious to get a good fit and feel that I wasted 3

>months with them trying to get it right. I have decided to move on to

>another audie, because I am afraid that I am wasting to much time with

>them getting these molds right. I have received some names of different

>audies, but wanted to know if anyone else had this problem not getting

>molds right. And if anyone could suggest and audie in our area, that

>they know of and are happy with. Any advise or opinions will be greatly

>appreciated. She is so full of life and to look at her you would never

>know our little angel has so many issues. She is happy, she babbles and

>I am just trying my best to get her somewhere to get a good mold to try

>and see what she test at. I'm extremely frustrated, since I knew at

>birth that my child had hearing loss, and first the inconsistency of the

>brainstems held us from getting aids on her, now that we can we can't

>get molds to fit. Any suggestions.

>Thanks in Advance.

>Colleen

>mom to le 8 months, 5 years (hearing)

>

>

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