Re: Don't know where to turn

[Guest guest]

Regarding the suspected hearing loss...your observations seem valid

to me. There has certainly been more than one child that they are

unable to successfully diagnos for various reasons. I would keep

retesting her until you are certain that you have reliable

results. Maybe every 6 months or so? We finally at age 3 1/2 got

reasonably reliable results for my son. I wouldn't be too panicked

about it if her language is developing typically, as that is the

major benefit of early aiding. That being said, I empathize with

your frustration at not being able to get the help you feel your

child needs now.

Regarding the other things, like wanting to put herself into the car

seat and put her shoes on and what not. That could really be

personality driven. If she is not competitive, then just waiting

for you to do it is probably fine with her. Also, given the quick

arrival of her youner sister, maybe she is reluctant to give up

those things that bring your attention just to her?? It is pretty

normal for some kids to not be potty trained until age 4 or

sometimes even 5. Hard to take, when we as parents are usually

really ready by the time they reach 12 to 18 months. It doesn't

help if you have one that trains early. It set's the bar pretty

high.

I would keep the OT appointment, if it will not cause undue stress.

All information is part of the puzzle and even if they deem her

perfectly normal, well that is still good information.

Anyhow, just wanted to send those few thoughts. Your daughter will

be fine because she does have an observant loving mother that will

champion for her always. Best Wishes, Tracey

[Guest guest]

Hi, don't know how much help I'll be, but I have a 3 1/2 year old. No

one disputes she has a profound hearing loss in her left ear, the

question now is, is her right ear normal? If you go by the all the

audi's I've taken her to, it is. But if she's not responding till

20db, that would indicate a minimal loss, according to Carol Flexor.

It's really hard to know what the right thing to do is. It really does

seem amazing that these doctors/audiologists can say so definitely how

well a child hears based on those tests. You'd think they'd use a

range or something since unless you have a completely cooperative

child, their responses are interpreted by the audiologist and it's not

always clear cut if they responded or not, or if they didn't respond,

yet heard the tone. Does Bree still have flat tympanograms? An ENT,

even the best in the world, can't just look in a person's ears and say

that he or she has normal hearing. You need an audi to test for that.

I suppose it's possible that she's seeking attention by saying she

can't hear you, and normal 3 year olds can be hard to understand some

times. But I don't know many 3 year olds who would be capable of

faking a hearing loss for a sustained period of time. :-) It's really

hard to judge from the other stories, did she not hear the dog or the

popcorn or the ice cream truck, or she just doesn't pay attention or

comment on what she's hearing. Sometimes it seems like 3 year olds

are on a different planet, they just don't do what's common sense to us.

As for not putting on shoes and getting in the car seat, that sounds

just like Clara. I've worked very hard to get her to get in the

carseat herself, take off and put on shoes, attempt to dress herself,

etc. She seems to prefer being waited on hand and foot and I seem to

constantly need to encourage her to do things for herself.

Anyway, good luck with Bree. I think I just did a bit more of my own

venting. I know how frustrating it all can be. I wish I could give

you more concrete suggestions about how to help her now, but you know

her, and if your gut says she's having hearing problems, keep looking

for help.

Take care, Cheryl

[Guest guest]

I don't really know what to say but I'll try.

First - I don't think an ENT should be your difinitive answer. I feel only an

audiologist can fully evaluate her hearing.

Your daughter also sounds a lot like mine. Although she developed a good

vocabulary she was very hard to understand. She constantly missed the ends of

words and the begining of words.

We did not find out about her hearing loss until she was four. The

audiologist was surprised at how well she was lip reading - she esentially was

tricking us.

Hearing between 20 and 40 is a hearing loss. Did that audiologist ever follow

up?

I would bring her to another audiologist - specifically and pediatric one.

Hope you get answers soon.

bswatson bswatson@...> wrote:

I’ve sat back and read everyone’s posts for weeks after Breanna’s

infamous ENT appointment that was supposedly with the best ENT in the

city (thru LeBonheur Children’s hospital). I don’t feel I belong to the

group yet I want to belong but they say Bree is “fine, no HL” and yet

from a Mommy point I don’t know if Bree IS fine and just “not the same”

or if there is something wrong. I know kids are not made from cookie

cutters and I’m not trying to compare her to her sisters but if we

didn’t compare kids then we’d never have the standard childhood

milestones either- so with that said…. Here’s what I’m dealing with.

Yesterday I was sitting here at the computer in my room and she was

standing about 5 feet away and I was telling her to do something (don’t

remember what it was) then she finally came over to me and I told her

the same thing, she said “I not (h)ear ooo (you) ober (over) dare

(there)”. I don’t know what to make out of that.

She’s been evaluated for speech and language and is excellent- she has a

great vocabulary. Although I still feel I say a zillion times a day

“Bree I don’t understand what you are saying or what you want”. She

originally did 2 hearing tests thru Methodist Central Hospital’s

Audiology- they did great with her had 1-2 audiologists and 1-2 students

working with her in the sound booth and everything else. At that time

she had flat tympanograms, and was said to be hearing between 20 and

40db- zigzag across the frequencies. Then she went to Dr Long (ENT) he

spent 5 min with her and said she’s fine, then in May we went to Dr

Mac they did their own hearing test on her in the booth with ONE

lady (not sure what her title was) and ME with our 2yro. How in the

world she got any accurate results on the booth test I have no clue.

Bree wouldn’t drop blocks in the bucket, then she tried sound field and

all she did was stare to the right waiting for the toy to light up, she

didn’t test any sounds from the left side. Then her speech

discrimination is GREAT… well yeah when you use words like HOT DOG vs

TOOTHBRUSH!!!!!! What about words that sound so similar like maybe and

baby. Can you tell I’m frustrated?

My 6 1/2yro has a serious case of not listening but I just don’t think

Bree is not listening, it’s like she can hear but she can’t hear- that

sound so dumb. Bree never HEARS popcorn popping in the microwave it’s

always “I smelly sumfing”, she only hears the Ice Cream Truck after one

of her sisters says “I hear the ice cream truck”, is (our 2yro)

hears a dog barking like in the distance and says “dog” or “dog shush”,

Bree never responds. Then there was the incident I posted about a month

ago where she didn’t like me talking in a whisper to is- Bree told

me “don’t talk so quiet”, and if you put your hand in front of your

mouth or is is on my lap Bree automatically moves to see your face.

She always sits in a certain spot in the living room no matter what

couch is there or not there, and she DEFINITELY gets absolutely

exhausted if we are in a busy/loud place for more than 30 minute time

she cries and wants to go home. Other things that I wonder about are she

doesn’t put her shoes on herself, and her 2yro sister does and she

doesn’t even attempt to put herself in her car seat in the van- she’ll

get up there but only after me telling her a zillion times and then she

won’t attempt to put her arms in the straps- those are just repeated

observations that I don’t know where they fall. She is finally pretty

much potty trained- AMEN.

I don’t know where to go I don’t know what to do, I know ya’ll are not

doctors but I don’t know what other things it could be. She is suppose

to be getting resting braces made for her feet for her toe walking

problem but that’s still up in the air also because the orthotist that

sees kids at the Physical Therapists’ clinic doesn’t take our insurance!

She has an appt next week for an overall OT eval- I don’t know if I

should keep it or cancel it.

Thanks for listening to me vent.

-Robin

In Memphis

Mommy to Constance 6 ½, Breanna 3, and is 2

[Guest guest]

I agree with Sara's comments here - I think an audiologist (a pediatric

audiologist) should evaluate your daughter. I also wonder about seeing a

developmental pediatrician. They really do have a good idea of

milestones given your daughter's age and look at the whole picture - not

just hearing - and then give you guidance on where to go next. I'm so

sorry! I know you're frustrated...

Hugs,

Barbara

Sara Chaddock wrote:

> I don't really know what to say but I'll try.

>

> First - I don't think an ENT should be your difinitive answer. I feel only

an audiologist can fully evaluate her hearing.

>

> Your daughter also sounds a lot like mine. Although she developed a good

vocabulary she was very hard to understand. She constantly missed the ends of

words and the begining of words.

>

> We did not find out about her hearing loss until she was four. The

audiologist was surprised at how well she was lip reading - she esentially was

tricking us.

>

> Hearing between 20 and 40 is a hearing loss. Did that audiologist ever

follow up?

>

> I would bring her to another audiologist - specifically and pediatric one.

>

> Hope you get answers soon.

>

> bswatson bswatson@...> wrote:

> I’ve sat back and read everyone’s posts for weeks after Breanna’s

> infamous ENT appointment that was supposedly with the best ENT in the

> city (thru LeBonheur Children’s hospital). I don’t feel I belong to the

> group yet I want to belong but they say Bree is “fine, no HL” and yet

> from a Mommy point I don’t know if Bree IS fine and just “not the same”

> or if there is something wrong. I know kids are not made from cookie

> cutters and I’m not trying to compare her to her sisters but if we

> didn’t compare kids then we’d never have the standard childhood

> milestones either- so with that said…. Here’s what I’m dealing with.

>

> Yesterday I was sitting here at the computer in my room and she was

> standing about 5 feet away and I was telling her to do something (don’t

> remember what it was) then she finally came over to me and I told her

> the same thing, she said “I not (h)ear ooo (you) ober (over) dare

> (there)”. I don’t know what to make out of that.

>

> She’s been evaluated for speech and language and is excellent- she has a

> great vocabulary. Although I still feel I say a zillion times a day

> “Bree I don’t understand what you are saying or what you want”. She

> originally did 2 hearing tests thru Methodist Central Hospital’s

> Audiology- they did great with her had 1-2 audiologists and 1-2 students

> working with her in the sound booth and everything else. At that time

> she had flat tympanograms, and was said to be hearing between 20 and

> 40db- zigzag across the frequencies. Then she went to Dr Long (ENT) he

> spent 5 min with her and said she’s fine, then in May we went to Dr

> Mac they did their own hearing test on her in the booth with ONE

> lady (not sure what her title was) and ME with our 2yro. How in the

> world she got any accurate results on the booth test I have no clue.

> Bree wouldn’t drop blocks in the bucket, then she tried sound field and

> all she did was stare to the right waiting for the toy to light up, she

> didn’t test any sounds from the left side. Then her speech

> discrimination is GREAT… well yeah when you use words like HOT DOG vs

> TOOTHBRUSH!!!!!! What about words that sound so similar like maybe and

> baby. Can you tell I’m frustrated?

>

> My 6 1/2yro has a serious case of not listening but I just don’t think

> Bree is not listening, it’s like she can hear but she can’t hear- that

> sound so dumb. Bree never HEARS popcorn popping in the microwave it’s

> always “I smelly sumfing”, she only hears the Ice Cream Truck after one

> of her sisters says “I hear the ice cream truck”, is (our 2yro)

> hears a dog barking like in the distance and says “dog” or “dog shush”,

> Bree never responds. Then there was the incident I posted about a month

> ago where she didn’t like me talking in a whisper to is- Bree told

> me “don’t talk so quiet”, and if you put your hand in front of your

> mouth or is is on my lap Bree automatically moves to see your face.

> She always sits in a certain spot in the living room no matter what

> couch is there or not there, and she DEFINITELY gets absolutely

> exhausted if we are in a busy/loud place for more than 30 minute time

> she cries and wants to go home. Other things that I wonder about are she

> doesn’t put her shoes on herself, and her 2yro sister does and she

> doesn’t even attempt to put herself in her car seat in the van- she’ll

> get up there but only after me telling her a zillion times and then she

> won’t attempt to put her arms in the straps- those are just repeated

> observations that I don’t know where they fall. She is finally pretty

> much potty trained- AMEN.

>

> I don’t know where to go I don’t know what to do, I know ya’ll are not

> doctors but I don’t know what other things it could be. She is suppose

> to be getting resting braces made for her feet for her toe walking

> problem but that’s still up in the air also because the orthotist that

> sees kids at the Physical Therapists’ clinic doesn’t take our insurance!

>

> She has an appt next week for an overall OT eval- I don’t know if I

> should keep it or cancel it.

>

> Thanks for listening to me vent.

>

> -Robin

> In Memphis

> Mommy to Constance 6 ½, Breanna 3, and is 2

>

>

[Guest guest]

Yes, Robin, I missed that. Between 20 and 40 is a loss for sure. That is

Sydney's good ear. She is getting it aided, and they are going to try an

aid in her really bad left ear, too. She has borderline SEVERE loss in it

with only 52% discrimination, but we are going to give it a whirl. Our Syd

is so independent/willful/whatever you want to call it. She'll definitely

let us know if it's helping or hindering. Boy will she ever. LOL. It'll

go right under her bed or in coat pocket or under clothes in a drawer . . .

and we'll get, " Hmmmmm, I dunno' where it is. Hmmmmmm, I thought it was

right here. "

Robin

>

> I don't really know what to say but I'll try.

>

> First - I don't think an ENT should be your difinitive answer. I feel only

> an audiologist can fully evaluate her hearing.

>

> Your daughter also sounds a lot like mine. Although she developed a good

> vocabulary she was very hard to understand. She constantly missed the ends

> of words and the begining of words.

>

> We did not find out about her hearing loss until she was four. The

> audiologist was surprised at how well she was lip reading - she esentially

> was tricking us.

>

> Hearing between 20 and 40 is a hearing loss. Did that audiologist ever

> follow up?

>

> I would bring her to another audiologist - specifically and pediatric one.

>

> Hope you get answers soon.

>

> bswatson bswatson@... > wrote:

> I've sat back and read everyone's posts for weeks after Breanna's

> infamous ENT appointment that was supposedly with the best ENT in the

> city (thru LeBonheur Children's hospital). I don't feel I belong to the

> group yet I want to belong but they say Bree is " fine, no HL " and yet

> from a Mommy point I don't know if Bree IS fine and just " not the same "

> or if there is something wrong. I know kids are not made from cookie

> cutters and I'm not trying to compare her to her sisters but if we

> didn't compare kids then we'd never have the standard childhood

> milestones either- so with that said…. Here's what I'm dealing with.

>

> Yesterday I was sitting here at the computer in my room and she was

> standing about 5 feet away and I was telling her to do something (don't

> remember what it was) then she finally came over to me and I told her

> the same thing, she said " I not (h)ear ooo (you) ober (over) dare

> (there) " . I don't know what to make out of that.

>

> She's been evaluated for speech and language and is excellent- she has a

> great vocabulary. Although I still feel I say a zillion times a day

> " Bree I don't understand what you are saying or what you want " . She

> originally did 2 hearing tests thru Methodist Central Hospital's

> Audiology- they did great with her had 1-2 audiologists and 1-2 students

> working with her in the sound booth and everything else. At that time

> she had flat tympanograms, and was said to be hearing between 20 and

> 40db- zigzag across the frequencies. Then she went to Dr Long (ENT) he

> spent 5 min with her and said she's fine, then in May we went to Dr

> Mac they did their own hearing test on her in the booth with ONE

> lady (not sure what her title was) and ME with our 2yro. How in the

> world she got any accurate results on the booth test I have no clue.

> Bree wouldn't drop blocks in the bucket, then she tried sound field and

> all she did was stare to the right waiting for the toy to light up, she

> didn't test any sounds from the left side. Then her speech

> discrimination is GREAT… well yeah when you use words like HOT DOG vs

> TOOTHBRUSH!!!!!! What about words that sound so similar like maybe and

> baby. Can you tell I'm frustrated?

>

> My 6 1/2yro has a serious case of not listening but I just don't think

> Bree is not listening, it's like she can hear but she can't hear- that

> sound so dumb. Bree never HEARS popcorn popping in the microwave it's

> always " I smelly sumfing " , she only hears the Ice Cream Truck after one

> of her sisters says " I hear the ice cream truck " , is (our 2yro)

> hears a dog barking like in the distance and says " dog " or " dog shush " ,

> Bree never responds. Then there was the incident I posted about a month

> ago where she didn't like me talking in a whisper to is- Bree told

> me " don't talk so quiet " , and if you put your hand in front of your

> mouth or is is on my lap Bree automatically moves to see your face.

> She always sits in a certain spot in the living room no matter what

> couch is there or not there, and she DEFINITELY gets absolutely

> exhausted if we are in a busy/loud place for more than 30 minute time

> she cries and wants to go home. Other things that I wonder about are she

> doesn't put her shoes on herself, and her 2yro sister does and she

> doesn't even attempt to put herself in her car seat in the van- she'll

> get up there but only after me telling her a zillion times and then she

> won't attempt to put her arms in the straps- those are just repeated

> observations that I don't know where they fall. She is finally pretty

> much potty trained- AMEN.

>

> I don't know where to go I don't know what to do, I know ya'll are not

> doctors but I don't know what other things it could be. She is suppose

> to be getting resting braces made for her feet for her toe walking

> problem but that's still up in the air also because the orthotist that

> sees kids at the Physical Therapists' clinic doesn't take our insurance!

>

> She has an appt next week for an overall OT eval- I don't know if I

> should keep it or cancel it.

>

> Thanks for listening to me vent.

>

> -Robin

> In Memphis

> Mommy to Constance 6 ½, Breanna 3, and is 2

>

>

[Guest guest]

The original testing was done by an audiologist and they said we need to

go to an ENT. I’m so confused about this city I swear everything is

backwards- South Parkway even goes East and West!

-Robin

In Memphis

Re: Don't know where to turn

I don't really know what to say but I'll try.

First - I don't think an ENT should be your difinitive answer. I feel

only an audiologist can fully evaluate her hearing.

Your daughter also sounds a lot like mine. Although she developed a good

vocabulary she was very hard to understand. She constantly missed the

ends of words and the begining of words.

We did not find out about her hearing loss until she was four. The

audiologist was surprised at how well she was lip reading - she

esentially was tricking us.

Hearing between 20 and 40 is a hearing loss. Did that audiologist ever

follow up?

I would bring her to another audiologist - specifically and pediatric

one.

Hope you get answers soon.

bswatson net>

wrote:

I’ve sat back and read everyone’s posts for weeks after Breanna’s

infamous ENT appointment that was supposedly with the best ENT in the

city (thru LeBonheur Children’s hospital). I don’t feel I belong to the

group yet I want to belong but they say Bree is “fine, no HL” and yet

from a Mommy point I don’t know if Bree IS fine and just “not the same”

or if there is something wrong. I know kids are not made from cookie

cutters and I’m not trying to compare her to her sisters but if we

didn’t compare kids then we’d never have the standard childhood

milestones either- so with that said…. Here’s what I’m dealing with.

Yesterday I was sitting here at the computer in my room and she was

standing about 5 feet away and I was telling her to do something (don’t

remember what it was) then she finally came over to me and I told her

the same thing, she said “I not (h)ear ooo (you) ober (over) dare

(there)”. I don’t know what to make out of that.

She’s been evaluated for speech and language and is excellent- she has a

great vocabulary. Although I still feel I say a zillion times a day

“Bree I don’t understand what you are saying or what you want”. She

originally did 2 hearing tests thru Methodist Central Hospital’s

Audiology- they did great with her had 1-2 audiologists and 1-2 students

working with her in the sound booth and everything else. At that time

she had flat tympanograms, and was said to be hearing between 20 and

40db- zigzag across the frequencies. Then she went to Dr Long (ENT) he

spent 5 min with her and said she’s fine, then in May we went to Dr

Mac they did their own hearing test on her in the booth with ONE

lady (not sure what her title was) and ME with our 2yro. How in the

world she got any accurate results on the booth test I have no clue.

Bree wouldn’t drop blocks in the bucket, then she tried sound field and

all she did was stare to the right waiting for the toy to light up, she

didn’t test any sounds from the left side. Then her speech

discrimination is GREAT… well yeah when you use words like HOT DOG vs

TOOTHBRUSH!!!!!! What about words that sound so similar like maybe and

baby. Can you tell I’m frustrated?

My 6 1/2yro has a serious case of not listening but I just don’t think

Bree is not listening, it’s like she can hear but she can’t hear- that

sound so dumb. Bree never HEARS popcorn popping in the microwave it’s

always “I smelly sumfing”, she only hears the Ice Cream Truck after one

of her sisters says “I hear the ice cream truck”, is (our 2yro)

hears a dog barking like in the distance and says “dog” or “dog shush”,

Bree never responds. Then there was the incident I posted about a month

ago where she didn’t like me talking in a whisper to is- Bree told

me “don’t talk so quiet”, and if you put your hand in front of your

mouth or is is on my lap Bree automatically moves to see your face.

She always sits in a certain spot in the living room no matter what

couch is there or not there, and she DEFINITELY gets absolutely

exhausted if we are in a busy/loud place for more than 30 minute time

she cries and wants to go home. Other things that I wonder about are she

doesn’t put her shoes on herself, and her 2yro sister does and she

doesn’t even attempt to put herself in her car seat in the van- she’ll

get up there but only after me telling her a zillion times and then she

won’t attempt to put her arms in the straps- those are just repeated

observations that I don’t know where they fall. She is finally pretty

much potty trained- AMEN.

I don’t know where to go I don’t know what to do, I know ya’ll are not

doctors but I don’t know what other things it could be. She is suppose

to be getting resting braces made for her feet for her toe walking

problem but that’s still up in the air also because the orthotist that

sees kids at the Physical Therapists’ clinic doesn’t take our insurance!

She has an appt next week for an overall OT eval- I don’t know if I

should keep it or cancel it.

Thanks for listening to me vent.

-Robin

In Memphis

Mommy to Constance 6 ½, Breanna 3, and is 2

[Guest guest]

We wasted over a year trying to get a conclusive audiological evaluation

done for my son - and he was at very high risk for hearing loss (he was

treated for cancer on a chemo protocol that results in 62% of the kids

needing hearing aids). He saw 3 audiologists who tried to do the one

audiologist evaluation. None of those gave us conclusive results. He was

only 2 at the time, and scared of the booth. Finally, we went to the

one lab in our area that does the evaluation with two people, and got

a conclusive audiogram : bilateral moderate-to-severe high frequency

hearing loss. He now has hearing aids. The change has been dramatic, and

now that he is more verbal we can tell right away if he isn't wearing his

hearing aids - he asks " what'd you say? " all the time.

I don't think we would have persevered except for knowing how many

of the kids on his protocol ended up with hearing aids.

Can you go back to the first lab that had more people working with her?

And don't cancel the OT eval! That is a whole different can of worms! My

son gets OT services too.

Bonnie

[Guest guest]

When my son was evaluated the final time (when we got the good reading), he

was sent to an ENT first - but only to clear the wax out of his ears and to

" clear him for hearing aids " (the audiologist was already pretty sure he was

going

to need them). Is it possible that was why you were referred to an ENT? I

don't

think ENTs are very specialized in the area of hearing loss.

Bonnie

>

> The original testing was done by an audiologist and they said we need to

> go to an ENT. I'm so confused about this city I swear everything is

> backwards- South Parkway even goes East and West!

>

> -Robin

> In Memphis

>

>

>

>

[Guest guest]

I don't know if it depends on the age - my 2.5 year old son was first tested

in the sound booth at age 2 yr 5 months - there was 1 person who did the

test & sat on my lap in the booth. We did the hearing test just to

rule out hearing loss as a reason for his speech delay (his articulation is

pretty bad although he does know alot of words). So we were all shocked

when the booth showed a moderate hearing loss. By all - I mean his parents,

grandparents, other moms, his ped, his speech therapist, his physical

therapist - everyone. No one thought he had a hearing problem, so they can

absolutely fool you. Instead of relying on that test, which relies so much

on getting appropriate cooperation, we went on to have a sedated BAER done

and it confirmed the previous test. Is it possible for you to get a BAER

done (if you are not familiar - you bring your child very sleep/hungry so

that they can sedate your child with a 1/2 dose of a drug, then they put 3

electrodes on their head and while they are sleeping they measure the brains

response to various sounds)? That way you would know for sure if there is

hearing loss. Now that he has been diagnosed, all of the speech therapists

& audiologists are telling me we are lucky to have caught it because kids

like him often slip through the cracks because they can get by so well on

the hearing that they do have. I would keep pushing until you are confident

enough in the results not be concerned. I know I am glad I kept pushing -

everyone thought I was wasting my time and that was doing just fine and

I should just not worry about it. Well, it is a mother's job to worry and

be attentive to her children, just like you are doing.

My two cents,

Sherry

_____

From: Listen-Up [mailto:Listen-Up ] On Behalf

Of bswatson

Sent: Friday, June 09, 2006 8:48 AM

To: Listen-Up

Subject: Don't know where to turn

I’ve sat back and read everyone’s posts for weeks after Breanna’s

infamous ENT appointment that was supposedly with the best ENT in the

city (thru LeBonheur Children’s hospital). I don’t feel I belong to the

group yet I want to belong but they say Bree is “fine, no HL” and yet

from a Mommy point I don’t know if Bree IS fine and just “not the same”

or if there is something wrong. I know kids are not made from cookie

cutters and I’m not trying to compare her to her sisters but if we

didn’t compare kids then we’d never have the standard childhood

milestones either- so with that said…. Here’s what I’m dealing with.

Yesterday I was sitting here at the computer in my room and she was

standing about 5 feet away and I was telling her to do something (don’t

remember what it was) then she finally came over to me and I told her

the same thing, she said “I not (h)ear ooo (you) ober (over) dare

(there)”. I don’t know what to make out of that.

She’s been evaluated for speech and language and is excellent- she has a

great vocabulary. Although I still feel I say a zillion times a day

“Bree I don’t understand what you are saying or what you want”. She

originally did 2 hearing tests thru Methodist Central Hospital’s

Audiology- they did great with her had 1-2 audiologists and 1-2 students

working with her in the sound booth and everything else. At that time

she had flat tympanograms, and was said to be hearing between 20 and

40db- zigzag across the frequencies. Then she went to Dr Long (ENT) he

spent 5 min with her and said she’s fine, then in May we went to Dr

Mac they did their own hearing test on her in the booth with ONE

lady (not sure what her title was) and ME with our 2yro. How in the

world she got any accurate results on the booth test I have no clue.

Bree wouldn’t drop blocks in the bucket, then she tried sound field and

all she did was stare to the right waiting for the toy to light up, she

didn’t test any sounds from the left side. Then her speech

discrimination is GREAT… well yeah when you use words like HOT DOG vs

TOOTHBRUSH!!!!!! What about words that sound so similar like maybe and

baby. Can you tell I’m frustrated?

My 6 1/2yro has a serious case of not listening but I just don’t think

Bree is not listening, it’s like she can hear but she can’t hear- that

sound so dumb. Bree never HEARS popcorn popping in the microwave it’s

always “I smelly sumfing”, she only hears the Ice Cream Truck after one

of her sisters says “I hear the ice cream truck”, is (our 2yro)

hears a dog barking like in the distance and says “dog” or “dog shush”,

Bree never responds. Then there was the incident I posted about a month

ago where she didn’t like me talking in a whisper to is- Bree told

me “don’t talk so quiet”, and if you put your hand in front of your

mouth or is is on my lap Bree automatically moves to see your face.

She always sits in a certain spot in the living room no matter what

couch is there or not there, and she DEFINITELY gets absolutely

exhausted if we are in a busy/loud place for more than 30 minute time

she cries and wants to go home. Other things that I wonder about are she

doesn’t put her shoes on herself, and her 2yro sister does and she

doesn’t even attempt to put herself in her car seat in the van- she’ll

get up there but only after me telling her a zillion times and then she

won’t attempt to put her arms in the straps- those are just repeated

observations that I don’t know where they fall. She is finally pretty

much potty trained- AMEN.

I don’t know where to go I don’t know what to do, I know ya’ll are not

doctors but I don’t know what other things it could be. She is suppose

to be getting resting braces made for her feet for her toe walking

problem but that’s still up in the air also because the orthotist that

sees kids at the Physical Therapists’ clinic doesn’t take our insurance!

She has an appt next week for an overall OT eval- I don’t know if I

should keep it or cancel it.

Thanks for listening to me vent.

-Robin

In Memphis

Mommy to Constance 6 ½, Breanna 3, and is 2

[Guest guest]

Amen. My husband is just now catching on that YES, Sydney does have hearing

loss, and YES, this comes with problems if not attended to. Sydney was

reading lips and getting by with her better ear for God knows how long. If

not for the ear infection she got in her better ear (which rendered her

close to deaf since the other hear was so bad) . . . we would still be

thinking all was well, I guess.

Looking back, though, we remember times when Sydney would talk a bunch of

crazy stuff on the cell phone, stuff that would have nothing to do with what

my mom would be telling her or asking her. We chalked it up to her wild

imagination . . . now, she knows to put the phone to her better ear.

Sometimes Sydney would ignore us, too, but she was also somewhat of a

headstrong child. We think. Kind of one of those chicken vs. egg things.

" Headstrong " because she was struggling to hear--or just headstrong

regardless.

Robin T. in NC

>

> I don't know if it depends on the age - my 2.5 year old son was first

> tested

> in the sound booth at age 2 yr 5 months - there was 1 person who did the

> test & sat on my lap in the booth. We did the hearing test just to

> rule out hearing loss as a reason for his speech delay (his articulation

> is

> pretty bad although he does know alot of words). So we were all shocked

> when the booth showed a moderate hearing loss. By all - I mean his

> parents,

> grandparents, other moms, his ped, his speech therapist, his physical

> therapist - everyone. No one thought he had a hearing problem, so they can

> absolutely fool you. Instead of relying on that test, which relies so much

> on getting appropriate cooperation, we went on to have a sedated BAER done

> and it confirmed the previous test. Is it possible for you to get a BAER

> done (if you are not familiar - you bring your child very sleep/hungry so

> that they can sedate your child with a 1/2 dose of a drug, then they put 3

> electrodes on their head and while they are sleeping they measure the

> brains

> response to various sounds)? That way you would know for sure if there is

> hearing loss. Now that he has been diagnosed, all of the speech therapists

> & audiologists are telling me we are lucky to have caught it because kids

> like him often slip through the cracks because they can get by so well on

> the hearing that they do have. I would keep pushing until you are

> confident

> enough in the results not be concerned. I know I am glad I kept pushing -

> everyone thought I was wasting my time and that was doing just fine

> and

> I should just not worry about it. Well, it is a mother's job to worry and

> be attentive to her children, just like you are doing.

>

> My two cents,

> Sherry

>

> _____

>

> From: Listen-Up [mailto:

> Listen-Up ] On Behalf

> Of bswatson

> Sent: Friday, June 09, 2006 8:48 AM

> To: Listen-Up

> Subject: Don't know where to turn

>

> I've sat back and read everyone's posts for weeks after Breanna's

> infamous ENT appointment that was supposedly with the best ENT in the

> city (thru LeBonheur Children's hospital). I don't feel I belong to the

> group yet I want to belong but they say Bree is " fine, no HL " and yet

> from a Mommy point I don't know if Bree IS fine and just " not the same "

> or if there is something wrong. I know kids are not made from cookie

> cutters and I'm not trying to compare her to her sisters but if we

> didn't compare kids then we'd never have the standard childhood

> milestones either- so with that said…. Here's what I'm dealing with.

>

> Yesterday I was sitting here at the computer in my room and she was

> standing about 5 feet away and I was telling her to do something (don't

> remember what it was) then she finally came over to me and I told her

> the same thing, she said " I not (h)ear ooo (you) ober (over) dare

> (there) " . I don't know what to make out of that.

>

> She's been evaluated for speech and language and is excellent- she has a

> great vocabulary. Although I still feel I say a zillion times a day

> " Bree I don't understand what you are saying or what you want " . She

> originally did 2 hearing tests thru Methodist Central Hospital's

> Audiology- they did great with her had 1-2 audiologists and 1-2 students

> working with her in the sound booth and everything else. At that time

> she had flat tympanograms, and was said to be hearing between 20 and

> 40db- zigzag across the frequencies. Then she went to Dr Long (ENT) he

> spent 5 min with her and said she's fine, then in May we went to Dr

> Mac they did their own hearing test on her in the booth with ONE

> lady (not sure what her title was) and ME with our 2yro. How in the

> world she got any accurate results on the booth test I have no clue.

> Bree wouldn't drop blocks in the bucket, then she tried sound field and

> all she did was stare to the right waiting for the toy to light up, she

> didn't test any sounds from the left side. Then her speech

> discrimination is GREAT… well yeah when you use words like HOT DOG vs

> TOOTHBRUSH!!!!!! What about words that sound so similar like maybe and

> baby. Can you tell I'm frustrated?

>

> My 6 1/2yro has a serious case of not listening but I just don't think

> Bree is not listening, it's like she can hear but she can't hear- that

> sound so dumb. Bree never HEARS popcorn popping in the microwave it's

> always " I smelly sumfing " , she only hears the Ice Cream Truck after one

> of her sisters says " I hear the ice cream truck " , is (our 2yro)

> hears a dog barking like in the distance and says " dog " or " dog shush " ,

> Bree never responds. Then there was the incident I posted about a month

> ago where she didn't like me talking in a whisper to is- Bree told

> me " don't talk so quiet " , and if you put your hand in front of your

> mouth or is is on my lap Bree automatically moves to see your face.

> She always sits in a certain spot in the living room no matter what

> couch is there or not there, and she DEFINITELY gets absolutely

> exhausted if we are in a busy/loud place for more than 30 minute time

> she cries and wants to go home. Other things that I wonder about are she

> doesn't put her shoes on herself, and her 2yro sister does and she

> doesn't even attempt to put herself in her car seat in the van- she'll

> get up there but only after me telling her a zillion times and then she

> won't attempt to put her arms in the straps- those are just repeated

> observations that I don't know where they fall. She is finally pretty

> much potty trained- AMEN.

>

> I don't know where to go I don't know what to do, I know ya'll are not

> doctors but I don't know what other things it could be. She is suppose

> to be getting resting braces made for her feet for her toe walking

> problem but that's still up in the air also because the orthotist that

> sees kids at the Physical Therapists' clinic doesn't take our insurance!

>

> She has an appt next week for an overall OT eval- I don't know if I

> should keep it or cancel it.

>

> Thanks for listening to me vent.

>

> -Robin

> In Memphis

> Mommy to Constance 6 ½, Breanna 3, and is 2

>

>

[Guest guest]

You have already gotten some great advice. I would just jump in and say if

you don't like the booth results keep looking for an answer.

I had to fight for 9 months to get an accurate diagnosis of my daughters

hearing.

I would toss out the idea of doing a Sedated ABR. If you don't think your

daughter is a good reporter in the booth it is a good way to find out what

she is and is not hearing - definitively. This needs to be done by a

Pediatric Audiologist.

I am also curious if she had an OAE done and if she passed it at all

frequencies?

I know it is so frustrating having to do the research that your ENT and

Audiologist should do. Just keep asking questions and going back into their

office. It could be that she has a slight loss that they keep missing.

And yes, words like toothbrush and hotdog are easy to discriminate. Here is

a chart of what is called the speech banana. It is easy to see how you only

need to hear a few sounds to get a good approximation with speech. Most

people only need to hear about 60% of the sounds to understand speech.

http://www.gohear.org/tech/audio.html

so you can see if she has a zigzaging 20-40 dB loss what she is missing out

on speech wise.

Best of luck,

Angie in KS

>

> Amen. My husband is just now catching on that YES, Sydney does have

> hearing

> loss, and YES, this comes with problems if not attended to. Sydney was

> reading lips and getting by with her better ear for God knows how long. If

> not for the ear infection she got in her better ear (which rendered her

> close to deaf since the other hear was so bad) . . . we would still be

> thinking all was well, I guess.

>

> Looking back, though, we remember times when Sydney would talk a bunch of

> crazy stuff on the cell phone, stuff that would have nothing to do with

> what

> my mom would be telling her or asking her. We chalked it up to her wild

> imagination . . . now, she knows to put the phone to her better ear.

> Sometimes Sydney would ignore us, too, but she was also somewhat of a

> headstrong child. We think. Kind of one of those chicken vs. egg things.

> " Headstrong " because she was struggling to hear--or just headstrong

> regardless.

>

> Robin T. in NC

>

>

> On 6/9/06, Sherry Freitas sfreitasi@...>

> wrote:

> >

> > I don't know if it depends on the age - my 2.5 year old son was first

> > tested

> > in the sound booth at age 2 yr 5 months - there was 1 person who did the

> > test & sat on my lap in the booth. We did the hearing test just to

> > rule out hearing loss as a reason for his speech delay (his articulation

> > is

> > pretty bad although he does know alot of words). So we were all shocked

> > when the booth showed a moderate hearing loss. By all - I mean his

> > parents,

> > grandparents, other moms, his ped, his speech therapist, his physical

> > therapist - everyone. No one thought he had a hearing problem, so they

> can

> > absolutely fool you. Instead of relying on that test, which relies so

> much

> > on getting appropriate cooperation, we went on to have a sedated BAER

> done

> > and it confirmed the previous test. Is it possible for you to get a BAER

> > done (if you are not familiar - you bring your child very sleep/hungry

> so

> > that they can sedate your child with a 1/2 dose of a drug, then they put

> 3

> > electrodes on their head and while they are sleeping they measure the

> > brains

> > response to various sounds)? That way you would know for sure if there

> is

> > hearing loss. Now that he has been diagnosed, all of the speech

> therapists

> > & audiologists are telling me we are lucky to have caught it because

> kids

> > like him often slip through the cracks because they can get by so well

> on

> > the hearing that they do have. I would keep pushing until you are

> > confident

> > enough in the results not be concerned. I know I am glad I kept pushing

> -

> > everyone thought I was wasting my time and that was doing just fine

> > and

> > I should just not worry about it. Well, it is a mother's job to worry

> and

> > be attentive to her children, just like you are doing.

> >

> > My two cents,

> > Sherry

> >

> > _____

> >

> > From: Listen-Up

roups.com> [mailto:

> > Listen-Up

roups.com>] On Behalf

>

> > Of bswatson

> > Sent: Friday, June 09, 2006 8:48 AM

> > To: Listen-Up

roups.com>

>

> > Subject: Don't know where to turn

> >

> > I've sat back and read everyone's posts for weeks after Breanna's

> > infamous ENT appointment that was supposedly with the best ENT in the

> > city (thru LeBonheur Children's hospital). I don't feel I belong to the

> > group yet I want to belong but they say Bree is " fine, no HL " and yet

> > from a Mommy point I don't know if Bree IS fine and just " not the same "

> > or if there is something wrong. I know kids are not made from cookie

> > cutters and I'm not trying to compare her to her sisters but if we

> > didn't compare kids then we'd never have the standard childhood

> > milestones either- so with that said…. Here's what I'm dealing with.

> >

> > Yesterday I was sitting here at the computer in my room and she was

> > standing about 5 feet away and I was telling her to do something (don't

> > remember what it was) then she finally came over to me and I told her

> > the same thing, she said " I not (h)ear ooo (you) ober (over) dare

> > (there) " . I don't know what to make out of that.

> >

> > She's been evaluated for speech and language and is excellent- she has a

> > great vocabulary. Although I still feel I say a zillion times a day

> > " Bree I don't understand what you are saying or what you want " . She

> > originally did 2 hearing tests thru Methodist Central Hospital's

> > Audiology- they did great with her had 1-2 audiologists and 1-2 students

> > working with her in the sound booth and everything else. At that time

> > she had flat tympanograms, and was said to be hearing between 20 and

> > 40db- zigzag across the frequencies. Then she went to Dr Long (ENT) he

> > spent 5 min with her and said she's fine, then in May we went to Dr

> > Mac they did their own hearing test on her in the booth with ONE

> > lady (not sure what her title was) and ME with our 2yro. How in the

> > world she got any accurate results on the booth test I have no clue.

> > Bree wouldn't drop blocks in the bucket, then she tried sound field and

> > all she did was stare to the right waiting for the toy to light up, she

> > didn't test any sounds from the left side. Then her speech

> > discrimination is GREAT… well yeah when you use words like HOT DOG vs

> > TOOTHBRUSH!!!!!! What about words that sound so similar like maybe and

> > baby. Can you tell I'm frustrated?

> >

> > My 6 1/2yro has a serious case of not listening but I just don't think

> > Bree is not listening, it's like she can hear but she can't hear- that

> > sound so dumb. Bree never HEARS popcorn popping in the microwave it's

> > always " I smelly sumfing " , she only hears the Ice Cream Truck after one

> > of her sisters says " I hear the ice cream truck " , is (our 2yro)

> > hears a dog barking like in the distance and says " dog " or " dog shush " ,

> > Bree never responds. Then there was the incident I posted about a month

> > ago where she didn't like me talking in a whisper to is- Bree told

> > me " don't talk so quiet " , and if you put your hand in front of your

> > mouth or is is on my lap Bree automatically moves to see your face.

> > She always sits in a certain spot in the living room no matter what

> > couch is there or not there, and she DEFINITELY gets absolutely

> > exhausted if we are in a busy/loud place for more than 30 minute time

> > she cries and wants to go home. Other things that I wonder about are she

> > doesn't put her shoes on herself, and her 2yro sister does and she

> > doesn't even attempt to put herself in her car seat in the van- she'll

> > get up there but only after me telling her a zillion times and then she

> > won't attempt to put her arms in the straps- those are just repeated

> > observations that I don't know where they fall. She is finally pretty

> > much potty trained- AMEN.

> >

> > I don't know where to go I don't know what to do, I know ya'll are not

> > doctors but I don't know what other things it could be. She is suppose

> > to be getting resting braces made for her feet for her toe walking

> > problem but that's still up in the air also because the orthotist that

> > sees kids at the Physical Therapists' clinic doesn't take our insurance!

> >

> > She has an appt next week for an overall OT eval- I don't know if I

> > should keep it or cancel it.

> >

> > Thanks for listening to me vent.

> >

> > -Robin

> > In Memphis

> > Mommy to Constance 6 ½, Breanna 3, and is 2

> >

> >

[Guest guest]

Robin,

This sounds sooo much like Hailey before she was dxed with her loss. I

would say keep what appointments you have already set up. What can it hurt. As

for the hearing, we didn't get a deffiniate answer until we had an ABR done. If

you aren't happy with the results you've gotten, let your ped know and ask

him/her to refer your daughter for and ABR. You have the right to extend all

options until you arrive at an answer you are comfortable with.

Selena

Mom to 8, 7, 6, 5 (all hearing with other different

issues) and Hailey 4 Severe Bilateral progressive Sensori-neural hearing loss,

adied 3-4-05

oh and ya can't forget Piatro the dog, Fuzzy the hamster, Rattle the garter

snake, and Mollie Jo the soon to be mommy of her first litter of mutt puppies.

And the 16 special needs kids i teach everyday, GO NORTHWOOD!

__________________________________________________

[Guest guest]

Robin

Everyone has good suggestions. When Hayley was 2, she had to have a

sedated ABR - which is how I found out she was deaf. We went to

UCLA.

Are you close to a major university? I am sorry, I am not familiar

with Memphis which is where I think you initially said. I hate to

say this, but you may want to explore other avenues - University of

Tennessee ? . I know it means driving. When I lived in Southern

California I would drive at least an hour to get to Hayley's mapping

appointments, but some families drove even further. I found this

website; I would call them and ask them for referals.

http://tsdeaf.org/

and http://www.state.tn.us/humanserv/TCDHH.htm

The first one is the state school for the deaf/hh in Tennessee.

Sometimes, they have very good services (state/charter schools) for

the kids and will provide referals/assessments. In Calif, we even

requested and received two assessments at the school for the deaf in

Riverside. You know, at CSDR, even though that was not an option

for Hayley, I was really pleased with the level of concern they gave

children that were NOT students there. Of course, you need to even

get to the point where someone besides you will see that there is a

hearing issue.

Since you are at the end of your rope, you will be making calls you

didn't think you would.

Good Luck

> This sounds sooo much like Hailey before she was dxed with

her loss. I would say keep what appointments you have already set

up. What can it hurt. As for the hearing, we didn't get a deffiniate

answer until we had an ABR done. If you aren't happy with the

results you've gotten, let your ped know and ask him/her to refer

your daughter for and ABR. You have the right to extend all options

until you arrive at an answer you are comfortable with.

>

[Guest guest]

You must ask for a middle ear muscle reflex test. If this is absent

you need an ABR immediately. You need the ABR done with One positive

and One negative polarity check. Ask them about auditory neuropathy

when you ask this.

When a parent says " It's like she can hear but she can't hear " it

always trigger the thought of auditory neuropathy with me. Kids with

this can have normal " hearing " but appear to have an auditory

processing disorder. They can have all degrees of hearing loss on an

audiogram but the nerve is not firing synchronously so sound is jumbled

to them based on the degree of the AN.

With AN you have an absent ABR (or severe delays) normal OAE's and

absent MEMR in about 99% of the cases. If this does not pan out it

could be an auditory processing issue, which they say can not be tested

for until older but some specialist are testing before 7 yrs now.

Please let me know what happens.

Elaine

[Guest guest]

In a message dated 6/9/2006 1:16:01 P.M. Eastern Daylight Time,

saraandchadd@... writes:

I would bring her to another audiologist - specifically and pediatric one.

Please find another audiologist and see him/her.

Our first audiologist put Ian in the soundproof booth (he was 7) and did not

avert or cover his face. Ian lip read through that booth test and came away

with a 10-15 db loss diagnosed. We went with that diagnosis for another year.

A lost year.

We have seen about 6 audiologists over the years, and we stick with the one

we trust. When Ian was evaluated by Montefiore hospital's ENT, she wanted

their audi to test him, so we did and were given what I think is yet another

misdiagnosis. Montefiore is one of the best hospitals in the northeast But the

evaluation is only as good as the person doing it.

So, now we go to Montefiore when things are related to Goldenhar (the

syndrome he has) and to Columbia Presbyterian (In NYC) for his hearing issues.

Your gut is telling you that something is not right. And 20-40 dbs IS a

hearing loss and needs support. Once we finally got a correct diagnosis we found

that Ian's loss was 35 dbs in one ear and 10-15 in the other. He was

immediately aided in the " bad " ear.

I have to agree with whoever told you that the audiologist is the one to

diagnose the hearing loss, not the ENT. Our ENTs are some of the " best " but they

hand us off immediately to the audiologist for almost all things hearing

related. The ENTs dealt with the malformations within Ian's ears, the potential

surgeries that could help, and any infections and things like that.

But when it came to diagnosing the level of loss, of recommending aids,

choosing aids, buying aids, adjusting and setting the aids -- all this is

handled

by his ENT. Our audiologist sends the ENT a report on Ian's hearing status

every time we have a hearing check. But it has now been about 2 years since

we've seen the ENT because there is no medical need. There ENT point blank said

we did not need him unless Ian had a sudden drop or there was a medical

concern. He said Dr Rosenblatt (our audi in Mt Kisco) would know when if/when we

needed to see him (Dr Keller, Columbia). So, our ENT plays no part in the

maintenance of Ian's hearing loss.

However, our audiologist plays a big part in our lives. He sees Ian every

3-6 months. WE call when there are issues, concerns, if the aids need adjusting,

when the FM system wasn't working with the aids ... finding an auiologist we

trusted and who listened to ME and my concerns was an incredible important

thing. We found someone who Ian trusted and who we parents trusted. It took

seeing 3 or 4 audis to decide who that was.

Gotta run to Girl Scouts -- Jill

PS: You ARE a part of this list. You were approved to join and therefore

should never feel like you don't belong here. Everyone here started out this

journey at some level of confused and lost, and that's why this list was

started. So, please don't hesitate to post, or contact me off list if you feel

shy

about asking the group. We're here to help. -- J

[Guest guest]

Hi from a fellow New Yorker....

How is the audiology dept at Columbia NY Presbyterian? Or do you mainly

deal with the audi up in Mt Kisco?

We similarly split our time between practices. Elias sees Ida Wise at

Blythedale Children's Hospital for audiological evaluations. She was

the one who was able to get a definitive reading after we wasted a year

with other labs. He goes to Memorial Sloan-Kettering for his

neuroblastoma issues (it was chemo that caused the hearing loss),

but he generally uses Blythedale for developmental and hearing problems.

Don't get me started on Montefiore. I will never set foot in that place

again. They nearly killed my kid by neglect and misdiagnosis.

He is only alive now because we took him out of the inpatient facility

at Montefiore, and frantically drove him over to Sloan-Kettering.

They took one look at him at Sloan-Kettering and put him in their

observation unit because he was so sick.

Sloan-Kettering, however, is clueless when it comes to hearing loss,

even though they treat more neuroblastoma than any other hospital

in the U.S, and the majority of those kids end up with serious hearing loss.

They built a new playroom last year with such poor accoustics that

even I can't hear in there, and of course, there are all these little

kids with hearing aids running around in there.

Bonnie

>

>

>

> We have seen about 6 audiologists over the years, and we stick with the

> one

> we trust. When Ian was evaluated by Montefiore hospital's ENT, she wanted

> their audi to test him, so we did and were given what I think is yet

> another

> misdiagnosis. Montefiore is one of the best hospitals in the northeast But

> the

> evaluation is only as good as the person doing it.

>

> So, now we go to Montefiore when things are related to Goldenhar (the

> syndrome he has) and to Columbia Presbyterian (In NYC) for his hearing

> issues.

>

>

>

[Guest guest]

Dear Robin,

I just joined this site and saw this trail of messages and wanted to

let you know about the Oral Deaf School in Memphis. They should have

audiologist and speech therapists there (or affiliated with them)

that can help you.

Our Oral Deaf school in San (Sunshine Cottage) has been such

a fabulous resource for us, since our son was two weeks old and

failed his second newborn screening test.

If you call this school ask make an appointment with the Parent

Infant Director or School Audiologist, they should be able to help

you get the help you need.

Memphis Oral School for the Deaf

711 Jefferson Avenue

Memphis, TN 38105

(Voice)

> I've sat back and read everyone's posts for weeks after Breanna's

> infamous ENT appointment that was supposedly with the best ENT in

the

> city (thru LeBonheur Children's hospital). I don't feel I belong

to the

> group yet I want to belong but they say Bree is " fine, no HL " and

yet

> from a Mommy point I don't know if Bree IS fine and just " not the

same "

> or if there is something wrong. I know kids are not made from

cookie

> cutters and I'm not trying to compare her to her sisters but if we

> didn't compare kids then we'd never have the standard childhood

> milestones either- so with that said…. Here's what I'm dealing

with.

>

> Yesterday I was sitting here at the computer in my room and she was

> standing about 5 feet away and I was telling her to do something

(don't

> remember what it was) then she finally came over to me and I told

her

> the same thing, she said " I not (h)ear ooo (you) ober (over) dare

> (there) " . I don't know what to make out of that.

>

> She's been evaluated for speech and language and is excellent- she

has a

> great vocabulary. Although I still feel I say a zillion times a day

> " Bree I don't understand what you are saying or what you want " . She

> originally did 2 hearing tests thru Methodist Central Hospital's

> Audiology- they did great with her had 1-2 audiologists and 1-2

students

> working with her in the sound booth and everything else. At that

time

> she had flat tympanograms, and was said to be hearing between 20

and

> 40db- zigzag across the frequencies. Then she went to Dr Long

(ENT) he

> spent 5 min with her and said she's fine, then in May we went to Dr

> Mac they did their own hearing test on her in the booth with

ONE

> lady (not sure what her title was) and ME with our 2yro. How in the

> world she got any accurate results on the booth test I have no

clue.

> Bree wouldn't drop blocks in the bucket, then she tried sound

field and

> all she did was stare to the right waiting for the toy to light

up, she

> didn't test any sounds from the left side. Then her speech

> discrimination is GREAT… well yeah when you use words like HOT DOG

vs

> TOOTHBRUSH!!!!!! What about words that sound so similar like maybe

and

> baby. Can you tell I'm frustrated?

>

> My 6 1/2yro has a serious case of not listening but I just don't

think

> Bree is not listening, it's like she can hear but she can't hear-

that

> sound so dumb. Bree never HEARS popcorn popping in the microwave

it's

> always " I smelly sumfing " , she only hears the Ice Cream Truck

after one

> of her sisters says " I hear the ice cream truck " , is (our 2yro)

> hears a dog barking like in the distance and says " dog " or " dog

shush " ,

> Bree never responds. Then there was the incident I posted about a

month

> ago where she didn't like me talking in a whisper to is- Bree

told

> me " don't talk so quiet " , and if you put your hand in front of your

> mouth or is is on my lap Bree automatically moves to see your

face.

> She always sits in a certain spot in the living room no matter what

> couch is there or not there, and she DEFINITELY gets absolutely

> exhausted if we are in a busy/loud place for more than 30 minute

time

> she cries and wants to go home. Other things that I wonder about

are she

> doesn't put her shoes on herself, and her 2yro sister does and she

> doesn't even attempt to put herself in her car seat in the van-

she'll

> get up there but only after me telling her a zillion times and

then she

> won't attempt to put her arms in the straps- those are just

repeated

> observations that I don't know where they fall. She is finally

pretty

> much potty trained- AMEN.

>

> I don't know where to go I don't know what to do, I know ya'll are

not

> doctors but I don't know what other things it could be. She is

suppose

> to be getting resting braces made for her feet for her toe walking

> problem but that's still up in the air also because the orthotist

that

> sees kids at the Physical Therapists' clinic doesn't take our

insurance!

>

> She has an appt next week for an overall OT eval- I don't know if I

> should keep it or cancel it.

>

> Thanks for listening to me vent.

>

> -Robin

> In Memphis

> Mommy to Constance 6 ½, Breanna 3, and is 2

>

>

[Guest guest]

Thanks Emylie,

Didn’t realize they could really actually help me, even if totally ORAL

is not the choice I make later on. I thought about the West Tennessee

School for the Deaf in (hour from me) because I *think* they are

open to options other than only oral. But at least maybe they can get me

somewhere to do an ABR because I don’t know if I should call the

pediatrician and try to discuss this thru the nurse line or if I should

make an actual appointment for Bree and discuss it there, she also has

the toe walking issue to discuss.

Thanks,

Robin

In Memphis

Re: Don't know where to turn

Dear Robin,

I just joined this site and saw this trail of messages and wanted to

let you know about the Oral Deaf School in Memphis. They should have

audiologist and speech therapists there (or affiliated with them)

that can help you.

Our Oral Deaf school in San (Sunshine Cottage) has been such

a fabulous resource for us, since our son was two weeks old and

failed his second newborn screening test.

If you call this school ask make an appointment with the Parent

Infant Director or School Audiologist, they should be able to help

you get the help you need.

Memphis Oral School for the Deaf

711 Jefferson Avenue

Memphis, TN 38105

(Voice)

> I've sat back and read everyone's posts for weeks after Breanna's

> infamous ENT appointment that was supposedly with the best ENT in

the

> city (thru LeBonheur Children's hospital). I don't feel I belong

to the

> group yet I want to belong but they say Bree is " fine, no HL " and

yet

> from a Mommy point I don't know if Bree IS fine and just " not the

same "

> or if there is something wrong. I know kids are not made from

cookie

> cutters and I'm not trying to compare her to her sisters but if we

> didn't compare kids then we'd never have the standard childhood

> milestones either- so with that said…. Here's what I'm dealing

with.

>

> Yesterday I was sitting here at the computer in my room and she was

> standing about 5 feet away and I was telling her to do something

(don't

> remember what it was) then she finally came over to me and I told

her

> the same thing, she said " I not (h)ear ooo (you) ober (over) dare

> (there) " . I don't know what to make out of that.

>

> She's been evaluated for speech and language and is excellent- she

has a

> great vocabulary. Although I still feel I say a zillion times a day

> " Bree I don't understand what you are saying or what you want " . She

> originally did 2 hearing tests thru Methodist Central Hospital's

> Audiology- they did great with her had 1-2 audiologists and 1-2

students

> working with her in the sound booth and everything else. At that

time

> she had flat tympanograms, and was said to be hearing between 20

and

> 40db- zigzag across the frequencies. Then she went to Dr Long

(ENT) he

> spent 5 min with her and said she's fine, then in May we went to Dr

> Mac they did their own hearing test on her in the booth with

ONE

> lady (not sure what her title was) and ME with our 2yro. How in the

> world she got any accurate results on the booth test I have no

clue.

> Bree wouldn't drop blocks in the bucket, then she tried sound

field and

> all she did was stare to the right waiting for the toy to light

up, she

> didn't test any sounds from the left side. Then her speech

> discrimination is GREAT… well yeah when you use words like HOT DOG

vs

> TOOTHBRUSH!!!!!! What about words that sound so similar like maybe

and

> baby. Can you tell I'm frustrated?

>

> My 6 1/2yro has a serious case of not listening but I just don't

think

> Bree is not listening, it's like she can hear but she can't hear-

that

> sound so dumb. Bree never HEARS popcorn popping in the microwave

it's

> always " I smelly sumfing " , she only hears the Ice Cream Truck

after one

> of her sisters says " I hear the ice cream truck " , is (our 2yro)

> hears a dog barking like in the distance and says " dog " or " dog

shush " ,

> Bree never responds. Then there was the incident I posted about a

month

> ago where she didn't like me talking in a whisper to is- Bree

told

> me " don't talk so quiet " , and if you put your hand in front of your

> mouth or is is on my lap Bree automatically moves to see your

face.

> She always sits in a certain spot in the living room no matter what

> couch is there or not there, and she DEFINITELY gets absolutely

> exhausted if we are in a busy/loud place for more than 30 minute

time

> she cries and wants to go home. Other things that I wonder about

are she

> doesn't put her shoes on herself, and her 2yro sister does and she

> doesn't even attempt to put herself in her car seat in the van-

she'll

> get up there but only after me telling her a zillion times and

then she

> won't attempt to put her arms in the straps- those are just

repeated

> observations that I don't know where they fall. She is finally

pretty

> much potty trained- AMEN.

>

> I don't know where to go I don't know what to do, I know ya'll are

not

> doctors but I don't know what other things it could be. She is

suppose

> to be getting resting braces made for her feet for her toe walking

> problem but that's still up in the air also because the orthotist

that

> sees kids at the Physical Therapists' clinic doesn't take our

insurance!

>

> She has an appt next week for an overall OT eval- I don't know if I

> should keep it or cancel it.

>

> Thanks for listening to me vent.

>

> -Robin

> In Memphis

> Mommy to Constance 6 ½, Breanna 3, and is 2

>

>

[Guest guest]

Robin,

I would recommend calling the Oral Deaf school in town -- they work

with children with more problems than " just " hearing loss and may

have good recommendations / referals for you regarding some of the

other concerns you have. Also, they will care more about determining

if there is an actual hearing loss and getting her the right

attention.

Also - as a side note in reference to the ORAL school - after a ton

of research and interviews (and crying) we have decided to do both

Oral and ASL in our family. I worried what would happen with our

school if they found out -- but at the end of the year dinner, the

director said some of our children at the school will only speak,

some will speak and use sign and some will only sign. . . so I was

thrilled. The wonderful thought leader in the Deaf Education

community that I spoke with (former Prof at Galludet and now Deaf

Consultant) told me that a staunch Oralist is hard to find in

educational circles (one that believes only in listening and

speaking) when I told her what a hard time I was having finding

support for my desire to teach my son both. She also said that even

the AG Bell foundation supports " Total Communication " -- meaning

doing what ever is necessary to communicate with your child:

speaking, signing, drawing, standing on your head, etc --- so she

was surprised our school did not. Seems like they have come

around. . . (hooray for Donovan!)

Anyways, I just hope that you can find some one that will take the

time and care to help you with your daughter.

Best of luck to you,

Emylie

> > I've sat back and read everyone's posts for weeks after Breanna's

> > infamous ENT appointment that was supposedly with the best ENT

in

> the

> > city (thru LeBonheur Children's hospital). I don't feel I belong

> to the

> > group yet I want to belong but they say Bree is " fine, no HL "

and

> yet

> > from a Mommy point I don't know if Bree IS fine and just " not

the

> same "

> > or if there is something wrong. I know kids are not made from

> cookie

> > cutters and I'm not trying to compare her to her sisters but if

we

> > didn't compare kids then we'd never have the standard childhood

> > milestones either- so with that said…. Here's what I'm dealing

> with.

> >

> > Yesterday I was sitting here at the computer in my room and she

was

> > standing about 5 feet away and I was telling her to do something

> (don't

> > remember what it was) then she finally came over to me and I

told

> her

> > the same thing, she said " I not (h)ear ooo (you) ober (over) dare

> > (there) " . I don't know what to make out of that.

> >

> > She's been evaluated for speech and language and is excellent-

she

> has a

> > great vocabulary. Although I still feel I say a zillion times a

day

> > " Bree I don't understand what you are saying or what you want " .

She

> > originally did 2 hearing tests thru Methodist Central Hospital's

> > Audiology- they did great with her had 1-2 audiologists and 1-2

> students

> > working with her in the sound booth and everything else. At that

> time

> > she had flat tympanograms, and was said to be hearing between 20

> and

> > 40db- zigzag across the frequencies. Then she went to Dr Long

> (ENT) he

> > spent 5 min with her and said she's fine, then in May we went to

Dr

> > Mac they did their own hearing test on her in the booth

with

> ONE

> > lady (not sure what her title was) and ME with our 2yro. How in

the

> > world she got any accurate results on the booth test I have no

> clue.

> > Bree wouldn't drop blocks in the bucket, then she tried sound

> field and

> > all she did was stare to the right waiting for the toy to light

> up, she

> > didn't test any sounds from the left side. Then her speech

> > discrimination is GREAT… well yeah when you use words like HOT

DOG

> vs

> > TOOTHBRUSH!!!!!! What about words that sound so similar like

maybe

> and

> > baby. Can you tell I'm frustrated?

> >

> > My 6 1/2yro has a serious case of not listening but I just don't

> think

> > Bree is not listening, it's like she can hear but she can't hear-

> that

> > sound so dumb. Bree never HEARS popcorn popping in the microwave

> it's

> > always " I smelly sumfing " , she only hears the Ice Cream Truck

> after one

> > of her sisters says " I hear the ice cream truck " , is (our

2yro)

> > hears a dog barking like in the distance and says " dog " or " dog

> shush " ,

> > Bree never responds. Then there was the incident I posted about

a

> month

> > ago where she didn't like me talking in a whisper to is-

Bree

> told

> > me " don't talk so quiet " , and if you put your hand in front of

your

> > mouth or is is on my lap Bree automatically moves to see

your

> face.

> > She always sits in a certain spot in the living room no matter

what

> > couch is there or not there, and she DEFINITELY gets absolutely

> > exhausted if we are in a busy/loud place for more than 30 minute

> time

> > she cries and wants to go home. Other things that I wonder about

> are she

> > doesn't put her shoes on herself, and her 2yro sister does and

she

> > doesn't even attempt to put herself in her car seat in the van-

> she'll

> > get up there but only after me telling her a zillion times and

> then she

> > won't attempt to put her arms in the straps- those are just

> repeated

> > observations that I don't know where they fall. She is finally

> pretty

> > much potty trained- AMEN.

> >

> > I don't know where to go I don't know what to do, I know ya'll

are

> not

> > doctors but I don't know what other things it could be. She is

> suppose

> > to be getting resting braces made for her feet for her toe

walking

> > problem but that's still up in the air also because the

orthotist

> that

> > sees kids at the Physical Therapists' clinic doesn't take our

> insurance!

> >

> > She has an appt next week for an overall OT eval- I don't know

if I

> > should keep it or cancel it.

> >

> > Thanks for listening to me vent.

> >

> > -Robin

> > In Memphis

> > Mommy to Constance 6 ½, Breanna 3, and is 2

> >

> >