RE: More questions

[Guest guest]

In a message dated 4/6/2006 11:44:05 A.M. Eastern Daylight Time,

bswatson@... writes:

How much damage can be done if all this is from middle ear fluid for 8

months?

If she is/was hearing in the range of 20-40 db, what does she not hear?

There is no way to predict or answer this. The answer is going to vary by

the child and what kind of infection is at play. There are kids who have had

repeated infections and rounds of antibiotics and had no subsequent damage to

the middle ear. One example of that type would be our Ian ... we know this

because the ENTs have been in Ian's ears and Ian had MANY ear infections as a

little one. He had an ear infection with every tooth that came in -- I know

this is considered an old wives' tale, but both my kids had them, so I guess I'm

officially an old wife. These infection happened before Ian's hearing loss

began and didn't cause it. Then there are kids who have gotten a more virulent

infection and that caused damage after only one incident. There is no way I

know of to tell the difference and maybe someone else on this list has more

information. ear infections are so common in little kids that most

pediatricians won't refer to and ENT unless there is something weird going on or

they

think putting in tubes would help.

As far as I know, we have to rely on our ENTs for their expertise and

guidance in the matter of potential damage. This is why it is so important to

find

doctors you feel comfortable with and trust.

<<What if any concerns would you have with my 23 mo old saying 13 words? She

jabbers, and will 'tell' you things that you have no clue what it is totally

just jabber.>>

There are all sorts of reasons for a little one not to speak. My

mother-in-law says she repeatedly had my husband's hearing tested when he was

little

(the 1950s -- she's a nurse)because he was so quiet and spoke so little she was

periodically convinced he was hard of hearing. However, he had two VERY

boisterous older siblings and he says throughout childhood, he simply never

could

get in a word anyway, so he didn't bother much. His hearing is fine, but age

is making him more and more farsighted. (grin)

My sister's second child had a speech delay but no hearing issues. Knowing

about Ian's hearing loss, she had him booth tested. To address his language

delay, he attended an EI nursery school that focused speech therapy and now

that he's a kindergartner, he speaks quite clearly and at age appropriate

levels.

I would make an appointment with an audi to have your 2-year-old's hearing

checked. We had our daughter's hearing checked when we learned about Ian's

loss. We figured we'd missed one hearing loss, we very well could have missed a

second one. Her hearing was fine. The audi said he gave us his first official

diagnosis of selective hearing -- the child simply ignored us when she didn't

like what we were saying. (grin).

I'd call and make an appointment. If there's no hearing loss, then you know

you need to consider other things if the speech issues are still bothering

you. And if there is a loss -- then you'd identified it and can start to

address

it. It sounds like a no-lose situation to me.

Best -- Jill

[Guest guest]

In a message dated 4/6/2006 11:44:05 A.M. Eastern Daylight Time,

bswatson@... writes:

How much damage can be done if all this is from middle ear fluid for 8

months?

If she is/was hearing in the range of 20-40 db, what does she not hear?

There is no way to predict or answer this. The answer is going to vary by

the child and what kind of infection is at play. There are kids who have had

repeated infections and rounds of antibiotics and had no subsequent damage to

the middle ear. One example of that type would be our Ian ... we know this

because the ENTs have been in Ian's ears and Ian had MANY ear infections as a

little one. He had an ear infection with every tooth that came in -- I know

this is considered an old wives' tale, but both my kids had them, so I guess I'm

officially an old wife. These infection happened before Ian's hearing loss

began and didn't cause it. Then there are kids who have gotten a more virulent

infection and that caused damage after only one incident. There is no way I

know of to tell the difference and maybe someone else on this list has more

information. ear infections are so common in little kids that most

pediatricians won't refer to and ENT unless there is something weird going on or

they

think putting in tubes would help.

As far as I know, we have to rely on our ENTs for their expertise and

guidance in the matter of potential damage. This is why it is so important to

find

doctors you feel comfortable with and trust.

<<What if any concerns would you have with my 23 mo old saying 13 words? She

jabbers, and will 'tell' you things that you have no clue what it is totally

just jabber.>>

There are all sorts of reasons for a little one not to speak. My

mother-in-law says she repeatedly had my husband's hearing tested when he was

little

(the 1950s -- she's a nurse)because he was so quiet and spoke so little she was

periodically convinced he was hard of hearing. However, he had two VERY

boisterous older siblings and he says throughout childhood, he simply never

could

get in a word anyway, so he didn't bother much. His hearing is fine, but age

is making him more and more farsighted. (grin)

My sister's second child had a speech delay but no hearing issues. Knowing

about Ian's hearing loss, she had him booth tested. To address his language

delay, he attended an EI nursery school that focused speech therapy and now

that he's a kindergartner, he speaks quite clearly and at age appropriate

levels.

I would make an appointment with an audi to have your 2-year-old's hearing

checked. We had our daughter's hearing checked when we learned about Ian's

loss. We figured we'd missed one hearing loss, we very well could have missed a

second one. Her hearing was fine. The audi said he gave us his first official

diagnosis of selective hearing -- the child simply ignored us when she didn't

like what we were saying. (grin).

I'd call and make an appointment. If there's no hearing loss, then you know

you need to consider other things if the speech issues are still bothering

you. And if there is a loss -- then you'd identified it and can start to

address

it. It sounds like a no-lose situation to me.

Best -- Jill

[Guest guest]

In a message dated 4/6/2006 11:44:05 A.M. Eastern Daylight Time,

bswatson@... writes:

How much damage can be done if all this is from middle ear fluid for 8

months?

If she is/was hearing in the range of 20-40 db, what does she not hear?

There is no way to predict or answer this. The answer is going to vary by

the child and what kind of infection is at play. There are kids who have had

repeated infections and rounds of antibiotics and had no subsequent damage to

the middle ear. One example of that type would be our Ian ... we know this

because the ENTs have been in Ian's ears and Ian had MANY ear infections as a

little one. He had an ear infection with every tooth that came in -- I know

this is considered an old wives' tale, but both my kids had them, so I guess I'm

officially an old wife. These infection happened before Ian's hearing loss

began and didn't cause it. Then there are kids who have gotten a more virulent

infection and that caused damage after only one incident. There is no way I

know of to tell the difference and maybe someone else on this list has more

information. ear infections are so common in little kids that most

pediatricians won't refer to and ENT unless there is something weird going on or

they

think putting in tubes would help.

As far as I know, we have to rely on our ENTs for their expertise and

guidance in the matter of potential damage. This is why it is so important to

find

doctors you feel comfortable with and trust.

<<What if any concerns would you have with my 23 mo old saying 13 words? She

jabbers, and will 'tell' you things that you have no clue what it is totally

just jabber.>>

There are all sorts of reasons for a little one not to speak. My

mother-in-law says she repeatedly had my husband's hearing tested when he was

little

(the 1950s -- she's a nurse)because he was so quiet and spoke so little she was

periodically convinced he was hard of hearing. However, he had two VERY

boisterous older siblings and he says throughout childhood, he simply never

could

get in a word anyway, so he didn't bother much. His hearing is fine, but age

is making him more and more farsighted. (grin)

My sister's second child had a speech delay but no hearing issues. Knowing

about Ian's hearing loss, she had him booth tested. To address his language

delay, he attended an EI nursery school that focused speech therapy and now

that he's a kindergartner, he speaks quite clearly and at age appropriate

levels.

I would make an appointment with an audi to have your 2-year-old's hearing

checked. We had our daughter's hearing checked when we learned about Ian's

loss. We figured we'd missed one hearing loss, we very well could have missed a

second one. Her hearing was fine. The audi said he gave us his first official

diagnosis of selective hearing -- the child simply ignored us when she didn't

like what we were saying. (grin).

I'd call and make an appointment. If there's no hearing loss, then you know

you need to consider other things if the speech issues are still bothering

you. And if there is a loss -- then you'd identified it and can start to

address

it. It sounds like a no-lose situation to me.

Best -- Jill

[Guest guest]

In a message dated 4/6/2006 2:25:42 P.M. Eastern Daylight Time,

bswatson@... writes:

But May 24th we are going to the " best " doctor in Memphis, at the

children's hospital.

Please don't be disappointed in how long it takes to get in to see this

doctor. We did the same kind of wait in order to see the doctors we now see.

It seems like ages right now, but the appointment is made and your daughter

is going to be seen. Instead think of it as a very positive thing that you

are now going to see someone new, who just happens to be really busy. We now

automatically set up Ian's check-ups with those doctors months in advance --

the wait is normal now. But if there was something weird going on and we

needed to get in sooner, Ian is now an established patient so he is seen very

quickly when there is a need.

Best -- Jill

[Guest guest]

In a message dated 4/6/2006 2:25:42 P.M. Eastern Daylight Time,

bswatson@... writes:

But May 24th we are going to the " best " doctor in Memphis, at the

children's hospital.

Please don't be disappointed in how long it takes to get in to see this

doctor. We did the same kind of wait in order to see the doctors we now see.

It seems like ages right now, but the appointment is made and your daughter

is going to be seen. Instead think of it as a very positive thing that you

are now going to see someone new, who just happens to be really busy. We now

automatically set up Ian's check-ups with those doctors months in advance --

the wait is normal now. But if there was something weird going on and we

needed to get in sooner, Ian is now an established patient so he is seen very

quickly when there is a need.

Best -- Jill

[Guest guest]

In a message dated 4/6/2006 2:25:42 P.M. Eastern Daylight Time,

bswatson@... writes:

But May 24th we are going to the " best " doctor in Memphis, at the

children's hospital.

Please don't be disappointed in how long it takes to get in to see this

doctor. We did the same kind of wait in order to see the doctors we now see.

It seems like ages right now, but the appointment is made and your daughter

is going to be seen. Instead think of it as a very positive thing that you

are now going to see someone new, who just happens to be really busy. We now

automatically set up Ian's check-ups with those doctors months in advance --

the wait is normal now. But if there was something weird going on and we

needed to get in sooner, Ian is now an established patient so he is seen very

quickly when there is a need.

Best -- Jill

[Guest guest]

I am no expert, but I do know that the range of 20-40 db is definitely

something that should be aided. our daughter's hearing is improved to

20 db with her aids, which is the highest level of what is considered

" normal " hearing by most information that I read.

Have you seen one of the web sites with the speech banana on it? Here

is one site with it:

http://edschool.csuhayward.edu/departments/ted/instruction/howe/5500/AAL-speechb\

anana.html

If you notice, your daughter could be missing about half the speech

sounds right now if her loss is up to 40 db. That would make a huge

difference in her speech.

I think that the information that I have is that a two year old should

have about 50 words, so I would definitely think 13 words is very low

for that age.

I know it is all very frustrating. I cannot believe that your daughter

would have fluid for that long and they would not refer you to an ENT

for tubes. I was told by our pediatrician and our ENT that more than

three months with fluid meant a referral for tubes. We have a boy in

one of my older daughter's classes who just got tubes at age 3 (nearly

four) and it has made a huge difference in his behavior; he did not have

speech issues, but behavioral issues because he never knew what was

going on and could not participate in group activities that involved

listening. Now, he does a whole lot better.

in Manassas, VA

> If Bree's hearing problems are from the flat tympanograms.. And if she

> still has flat tympanograms right now that means she's had middle ear

> fluid for 8 months. She has not had any infections in this time and only

> had 2 infections in her life. This cannot be good can it? How much

> damage can be done if all this is from middle ear fluid for 8 months?

> If she is/was hearing in the range of 20-40 db, what does she not hear?

> Things I have noticed is 1. she talks loudly and I have to remind her to

> turn her voice down 2. some sounds she says are " too loud " and they are

> things like the garbage truck going past, the heat or a/c fan in the van

> on full blast, the bathroom fan 3. I don't know if some of her word

> pronunciations are because she's 3 or because she's not hearing the

> sound. If the tympanograms were not flat, would they aid her at this

> range?

>

> The referral lady from the Pediatrician's office called and we worked

> thru a few things. The peds wanted a hearing AND speech Evaluation. So

> we are going to use the same Rehab Services she was getting PT and OT

> from for a Speech eval. That solved speech but now we still were lacking

> in the hearing, Jane said the only other doctor she can think of is Dr

> Mc at Lebonheur (Children's hospital) and he's REALLY hard to get

> in to! So we got in.. we go the END OF MAY!!!!!

>

> It's frustrating but now there is a light.

>

> I need to turn in her info to Special Ed for the county schools, should

> I wait till this May 24th appointment or should I turn in what I have

> now? Remember she is 3, so no more EIS (only go from birth to 3yro here)

> so now it's thru the school district.

>

> What if any concerns would you have with my 23 mo old saying 13 words?

> She jabbers, and will 'tell' you things that you have no clue what it is

> totally just jabber.

>

> I know I'm full of questions, please forgive me! I don't mean to take up

> the whole board!!!!

>

> Thanks so much,

> Robin

> Mommy to Constance 6, Breanna 3 and is almost 2

>

>

>

[Guest guest]

I am no expert, but I do know that the range of 20-40 db is definitely

something that should be aided. our daughter's hearing is improved to

20 db with her aids, which is the highest level of what is considered

" normal " hearing by most information that I read.

Have you seen one of the web sites with the speech banana on it? Here

is one site with it:

http://edschool.csuhayward.edu/departments/ted/instruction/howe/5500/AAL-speechb\

anana.html

If you notice, your daughter could be missing about half the speech

sounds right now if her loss is up to 40 db. That would make a huge

difference in her speech.

I think that the information that I have is that a two year old should

have about 50 words, so I would definitely think 13 words is very low

for that age.

I know it is all very frustrating. I cannot believe that your daughter

would have fluid for that long and they would not refer you to an ENT

for tubes. I was told by our pediatrician and our ENT that more than

three months with fluid meant a referral for tubes. We have a boy in

one of my older daughter's classes who just got tubes at age 3 (nearly

four) and it has made a huge difference in his behavior; he did not have

speech issues, but behavioral issues because he never knew what was

going on and could not participate in group activities that involved

listening. Now, he does a whole lot better.

in Manassas, VA

> If Bree's hearing problems are from the flat tympanograms.. And if she

> still has flat tympanograms right now that means she's had middle ear

> fluid for 8 months. She has not had any infections in this time and only

> had 2 infections in her life. This cannot be good can it? How much

> damage can be done if all this is from middle ear fluid for 8 months?

> If she is/was hearing in the range of 20-40 db, what does she not hear?

> Things I have noticed is 1. she talks loudly and I have to remind her to

> turn her voice down 2. some sounds she says are " too loud " and they are

> things like the garbage truck going past, the heat or a/c fan in the van

> on full blast, the bathroom fan 3. I don't know if some of her word

> pronunciations are because she's 3 or because she's not hearing the

> sound. If the tympanograms were not flat, would they aid her at this

> range?

>

> The referral lady from the Pediatrician's office called and we worked

> thru a few things. The peds wanted a hearing AND speech Evaluation. So

> we are going to use the same Rehab Services she was getting PT and OT

> from for a Speech eval. That solved speech but now we still were lacking

> in the hearing, Jane said the only other doctor she can think of is Dr

> Mc at Lebonheur (Children's hospital) and he's REALLY hard to get

> in to! So we got in.. we go the END OF MAY!!!!!

>

> It's frustrating but now there is a light.

>

> I need to turn in her info to Special Ed for the county schools, should

> I wait till this May 24th appointment or should I turn in what I have

> now? Remember she is 3, so no more EIS (only go from birth to 3yro here)

> so now it's thru the school district.

>

> What if any concerns would you have with my 23 mo old saying 13 words?

> She jabbers, and will 'tell' you things that you have no clue what it is

> totally just jabber.

>

> I know I'm full of questions, please forgive me! I don't mean to take up

> the whole board!!!!

>

> Thanks so much,

> Robin

> Mommy to Constance 6, Breanna 3 and is almost 2

>

>

>

[Guest guest]

I am no expert, but I do know that the range of 20-40 db is definitely

something that should be aided. our daughter's hearing is improved to

20 db with her aids, which is the highest level of what is considered

" normal " hearing by most information that I read.

Have you seen one of the web sites with the speech banana on it? Here

is one site with it:

http://edschool.csuhayward.edu/departments/ted/instruction/howe/5500/AAL-speechb\

anana.html

If you notice, your daughter could be missing about half the speech

sounds right now if her loss is up to 40 db. That would make a huge

difference in her speech.

I think that the information that I have is that a two year old should

have about 50 words, so I would definitely think 13 words is very low

for that age.

I know it is all very frustrating. I cannot believe that your daughter

would have fluid for that long and they would not refer you to an ENT

for tubes. I was told by our pediatrician and our ENT that more than

three months with fluid meant a referral for tubes. We have a boy in

one of my older daughter's classes who just got tubes at age 3 (nearly

four) and it has made a huge difference in his behavior; he did not have

speech issues, but behavioral issues because he never knew what was

going on and could not participate in group activities that involved

listening. Now, he does a whole lot better.

in Manassas, VA

> If Bree's hearing problems are from the flat tympanograms.. And if she

> still has flat tympanograms right now that means she's had middle ear

> fluid for 8 months. She has not had any infections in this time and only

> had 2 infections in her life. This cannot be good can it? How much

> damage can be done if all this is from middle ear fluid for 8 months?

> If she is/was hearing in the range of 20-40 db, what does she not hear?

> Things I have noticed is 1. she talks loudly and I have to remind her to

> turn her voice down 2. some sounds she says are " too loud " and they are

> things like the garbage truck going past, the heat or a/c fan in the van

> on full blast, the bathroom fan 3. I don't know if some of her word

> pronunciations are because she's 3 or because she's not hearing the

> sound. If the tympanograms were not flat, would they aid her at this

> range?

>

> The referral lady from the Pediatrician's office called and we worked

> thru a few things. The peds wanted a hearing AND speech Evaluation. So

> we are going to use the same Rehab Services she was getting PT and OT

> from for a Speech eval. That solved speech but now we still were lacking

> in the hearing, Jane said the only other doctor she can think of is Dr

> Mc at Lebonheur (Children's hospital) and he's REALLY hard to get

> in to! So we got in.. we go the END OF MAY!!!!!

>

> It's frustrating but now there is a light.

>

> I need to turn in her info to Special Ed for the county schools, should

> I wait till this May 24th appointment or should I turn in what I have

> now? Remember she is 3, so no more EIS (only go from birth to 3yro here)

> so now it's thru the school district.

>

> What if any concerns would you have with my 23 mo old saying 13 words?

> She jabbers, and will 'tell' you things that you have no clue what it is

> totally just jabber.

>

> I know I'm full of questions, please forgive me! I don't mean to take up

> the whole board!!!!

>

> Thanks so much,

> Robin

> Mommy to Constance 6, Breanna 3 and is almost 2

>

>

>

[Guest guest]

Thanks ,

The ENT we saw in December (after she had a hearing test in Sept and 7

weeks later in November both with flat tympanograms) blew us off and

said " she's fine " after seeing her for 10 min. He didn't even tell us to

come back in a few months! That is why I'm most frustrated with it all!

But May 24th we are going to the " best " doctor in Memphis, at the

children's hospital.

I'm praying we get answers at that appointment. Right now I feel like

the message I am getting is " because her hearing rises into the level of

speech (at certain frequencies) there is nothing wrong with her'. I just

want some people (audi and ENT or someone) to AGREE on something and

come with a course of action. If there's fluid and we are fairly sure

it's been there a while then let's do something to take care of it, if

not then let's go another route ABR, etc.

Thanks,

Robin

Re: More questions

I am no expert, but I do know that the range of 20-40 db is definitely

something that should be aided. our daughter's hearing is improved to

20 db with her aids, which is the highest level of what is considered

" normal " hearing by most information that I read.

Have you seen one of the web sites with the speech banana on it? Here

is one site with it:

http://edschool.csuhayward.edu/departments/ted/instruction/howe/5500/AAL

-speechbanana.html

If you notice, your daughter could be missing about half the speech

sounds right now if her loss is up to 40 db. That would make a huge

difference in her speech.

I think that the information that I have is that a two year old should

have about 50 words, so I would definitely think 13 words is very low

for that age.

I know it is all very frustrating. I cannot believe that your daughter

would have fluid for that long and they would not refer you to an ENT

for tubes. I was told by our pediatrician and our ENT that more than

three months with fluid meant a referral for tubes. We have a boy in

one of my older daughter's classes who just got tubes at age 3 (nearly

four) and it has made a huge difference in his behavior; he did not have

speech issues, but behavioral issues because he never knew what was

going on and could not participate in group activities that involved

listening. Now, he does a whole lot better.

in Manassas, VA

> If Bree's hearing problems are from the flat tympanograms.. And if she

> still has flat tympanograms right now that means she's had middle ear

> fluid for 8 months. She has not had any infections in this time and

only

> had 2 infections in her life. This cannot be good can it? How much

> damage can be done if all this is from middle ear fluid for 8 months?

> If she is/was hearing in the range of 20-40 db, what does she not

hear?

> Things I have noticed is 1. she talks loudly and I have to remind her

to

> turn her voice down 2. some sounds she says are " too loud " and they

are

> things like the garbage truck going past, the heat or a/c fan in the

van

> on full blast, the bathroom fan 3. I don't know if some of her word

> pronunciations are because she's 3 or because she's not hearing the

> sound. If the tympanograms were not flat, would they aid her at this

> range?

>

> The referral lady from the Pediatrician's office called and we worked

> thru a few things. The peds wanted a hearing AND speech Evaluation. So

> we are going to use the same Rehab Services she was getting PT and OT

> from for a Speech eval. That solved speech but now we still were

lacking

> in the hearing, Jane said the only other doctor she can think of is Dr

> Mc at Lebonheur (Children's hospital) and he's REALLY hard to

get

> in to! So we got in.. we go the END OF MAY!!!!!

>

> It's frustrating but now there is a light.

>

> I need to turn in her info to Special Ed for the county schools,

should

> I wait till this May 24th appointment or should I turn in what I have

> now? Remember she is 3, so no more EIS (only go from birth to 3yro

here)

> so now it's thru the school district.

>

> What if any concerns would you have with my 23 mo old saying 13 words?

> She jabbers, and will 'tell' you things that you have no clue what it

is

> totally just jabber.

>

> I know I'm full of questions, please forgive me! I don't mean to take

up

> the whole board!!!!

>

> Thanks so much,

> Robin

> Mommy to Constance 6, Breanna 3 and is almost 2

>

>

>

[Guest guest]

Robin,

I feel for you. You aren't getting answers that you want or need to have

and to have all of this on your shoulders is incredibliy difficult.

Let me quickly...introduce myself. I'm Debbie and I have two children.

who is 6 and has a moderate SNHL and who is hearing and 3. When

was 2 she had only about 10 words that I could understand. She babbled

all the time. She would even talk to you....You just couldn't understand it. I

asked our ped about it and he would reasure me that all kids develop at

different times, and so would . Well, 3 months later I referred her to

our states EI program. She was found to have a speech delay and began services.

Two months into services, we got a hearing test and behold, found the hearing

loss. The first ENT that we saw, spoke to us after the audi had already

informed us that would need to wear hearing aids. I think that he may

have talked to us for 5-10 minuites....if that. He looked into her ears, said

" It looks like she may have been born with it. Do you have any questions? "

That was the first and last time we saw that ENT.

We are currently on our fourth ENT, but we love and trust her. She works at

one of the children's hospitals near us. was born after newborn

screening and passed his. However he is the child that had constant ear

infections. We began to screen his hearing at six months old. And every time

we tried to schedule a screening...they found fuild in his ears and sure enough

we would be on our way to a full blown infection. The audi would not perform

the hearing test with the fluid in there because the results were not accurate.

This went on for a little over a year., Eventually I demanded that he be tested

even with the fluid. I needed to know what he was hearing with the fluid since

it always seemed to be there. The audi told me after the test that his hearing

is fine. I was releived, but still waited to recieve the paperwork. When I got

the results, they showed that with the fluid (flat tymps) that he was hearing

between 30-35dbs. HELLO....I'm sorry but in

my book that is not normal hearing. Especially in a child who is just learning

language. Out ped didnt' see any problems with it and wanted to take a wait and

see approach. I then took him to our ENT (who specialises in hearing issues)

and she immediently agreed that tubes were in order. Sorry for the long

introduction, but I thought that it would help you to know that someone else has

kinda been there.

I'm glad that you've got the appointment for Bree. I think it will be helpful

to see someone that will listen to your concerns. I know it seems like it's

going to take forever to get to that date, but it will be here before you know

it. Our first appointments always take quite a while. Do you have just an

appointment for the ENT or did they schedule a hearing test as well for that

day? If they did not, see if they can. That way you can eliminate some waiting

time. I learned this the hard way.

As for is, call up your EI and get a langauge evaluation done. See if

there is a delay. They may even pay for you to get a hearing test for her. I'm

not saying that she has one, but I've learned that being proactive is better

than waiting to see what happens. If she has one then you found it, if not,

then you have narrowed down what isn't causing the delay.

I know it's long, but if you have any questions, or I didn't make something

clear, let me know.

Debbie, mom to , 6, moderate SNHL and , 3, hearing

Some men see things as they are and ask why. Others dream things that never were

and ask why not. G.B Shaw

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

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[Guest guest]

Robin

I would start making a list of everything you want to talk about and

start now and add to it. The reason being is that this doctor seems

pretty busy. You want to make sure everything is answered.

>> But May 24th we are going to the " best " doctor in Memphis, at the

> children's hospital.

> I'm praying we get answers at that appointment. Right now I feel

like

> the message I am getting is " because her hearing rises into the

level of

> speech (at certain frequencies) there is nothing wrong with her'.

I just

> want some people (audi and ENT or someone) to AGREE on something

and

> come with a course of action. If there's fluid and we are fairly

sure

> it's been there a while then let's do something to take care of

it, if

> not then let's go another route ABR, etc.

>

>

[Guest guest]

Robin wrote:

I know I'm full of questions, please forgive me! I don't mean to take up

the whole board!!!!

Thanks so much,

Robin

Mommy to Constance 6, Breanna 3 and is almost 2

**

First off, welcome to the group, Robin! I know it's so frustrating to try

to work through the " system " to get things done, but you've found a

wonderful community of parents who will be more than happy to help you avoid

the pitfalls we've all encountered along the way.

Personally, I would recommend getting your daughter's information to your

county schools now, rather than waiting until the end of May. Many school

districts don't do evaluation work (etc) over the summer, but some will go

ahead and try to start things early so that they're not part of the

'beginning of school " crush next August/September. Also, since she's

already 3, depending on her evaluation results, she may or may not qualify

for certain services over the summer - so starting early can only help your

cause.

As far as your 23 month old - it couldn't hurt to ask for a speech eval to

be done.

Good luck!

Kris

Mom to (7 y.o., Complete/Profound SNL, Left Ear) and Ethan (6 y.o.,

hearing)

[Guest guest]

<I feel for you. You aren't getting answers that you want or need

to have and to have all of this on your shoulders is incredibliy

difficult.>

This is 110% so true that all of it is on ME. From taking it upon

myself to contact EIS and getting an initial eval. (which of course she

didn't qualify for), to getting referrals from the pediatrician's

office, to going to PT, OT... EVERYTHING!! Then the worst part of it all

is feeling like they think I'm making this up. She has few classical

signs of SID, HL, toe walking. But NOTHING is explained, nothing has a

root cause. Sometimes I just think ok maybe it's me, maybe I am worrying

too much but some of it can't be ignored. Things such as the toe

walking- this can't be good LONG term- knees, back, etc have got to be

involved with this. Then now her heel cords are getting tighter.... yet

I still wait and they finally returned my call today and I wasn't home

of course they called my house and not my cell which I told them to call

the cell! ARG

Thanks for letting me vent, sorry if it makes no sense!!

-Robin

Mommy to Constance 6, Breanna 3, is almost 2

_____

[Guest guest]

<I feel for you. You aren't getting answers that you want or need

to have and to have all of this on your shoulders is incredibliy

difficult.>

This is 110% so true that all of it is on ME. From taking it upon

myself to contact EIS and getting an initial eval. (which of course she

didn't qualify for), to getting referrals from the pediatrician's

office, to going to PT, OT... EVERYTHING!! Then the worst part of it all

is feeling like they think I'm making this up. She has few classical

signs of SID, HL, toe walking. But NOTHING is explained, nothing has a

root cause. Sometimes I just think ok maybe it's me, maybe I am worrying

too much but some of it can't be ignored. Things such as the toe

walking- this can't be good LONG term- knees, back, etc have got to be

involved with this. Then now her heel cords are getting tighter.... yet

I still wait and they finally returned my call today and I wasn't home

of course they called my house and not my cell which I told them to call

the cell! ARG

Thanks for letting me vent, sorry if it makes no sense!!

-Robin

Mommy to Constance 6, Breanna 3, is almost 2

_____

[Guest guest]

In a message dated 4/7/2006 7:30:40 P.M. Eastern Daylight Time,

bswatson@... writes:

She has few classical

signs of SID, HL, toe walking. But NOTHING is explained, nothing has a

root cause. Sometimes I just think ok maybe it's me, maybe I am worrying

too much but some of it can't be ignored.

You are making perfect sense! It is exhausting and frustrating and yet you

just can't stop trying -- that's how I felt. What you describe about it part of

the reason we went to a geneticist. Ian didn't display enough syndrome

markers as a baby, even as a toddler, it was over time that they added up to

something and the hearing loss was the definitive one. At that point, the

doctors

took me a bit more seriously.

I didn't know I could have just taken him to a geneticist. I thought the doc

had to refer me to one. Duh! Pretty stupid on my part. But once we did, and

once I had a name to quote -- as stupid as that sounds, the subsequent doctors

took more notice. And being a rare one actually makes Ian more interesting

to them all. Our local doctors are more cooperative because part of what I

told them when we joined their group was that I needed them to be willing to

work with his doctors from Columbia and Montefiore. They were pleased at the

association -- two of the big impressive hospital in NYC. (Along the way, I also

learned to work the doc's egos, LOL)

Once you can handle one more appointment in your ridiculous schedule, a

geneticist might be a good choice. That was the person who finally acknowledged

that all Ian's little quirks were indeed related. After that if anyone

poo-poo'd me, I could point to the name (Goldenhar) and they'd shut up and take

me

seriously. And none of them have a clue what it even is!

Best -- Jill