Re: I am a newbie here!!

[Guest guest]

>

>Reply-To: Listen-Upegroups

>To: Listen-Upegroups

>Subject: I am a newbie here!!

>Date: Sat, 30 Sep 2000 19:06:12 -0000

>

>Hi everyone! My name is Bobbie and my husband is . We have two

>children , Jr. (mild hearing loss) and Allana (severe hearing

>loss). We live near Altoona, PA. Allana was diagnosed as having a

>severe/profound hearing loss at the age of 18 months. She has been

>wearing hearing aids for 6 months. She has worn them consistently

>from the day she got them. (I've heard that is very unusual). Allana

>has tubes in both ears, because she had a problem with fluid. Allana

>also has global developmental delays,(low cognitive scores, low

>muscle tone, communication/social delays) and vision concerns.

>Allana has had early intervention in our home since she was 18

>mths.old. Allana had an ABR done 2 weeks ago. She is now 2 1/2 years

>old. The test showed, to my surprise, 35db loss at 500hz (mild

>loss), 45db. loss at 1000hz. (moderate loss)that is in both ears.

>After 1000hz, you can see a difference in ears. Allana has a 65db.

>loss in her left ear and a 100db. loss in her right ear at 2000hz. At

>4000hz, Allana could hear above 85db. in her left ear, but there was

>no detectable hearing above 2000 hz. in her right ear. Allana's

>responses to sounds in her daily environment seem very inconsistent.

>The ABR showed only a mild to moderate loss at low frequencies, but

>she doesn't respond to hardly any sounds. One difference I have

>noticed since Allana has been wearing her aids for 6 months now is

>that with out the aids, she will sit up and look at the phone when it

>rings, and look at me to see if I move. She never seemed to hear the

>phone before. Does this mean her hearing is improving or just that

>since she knows what the sound is now because of wearing aids, she

>understands even when not wearing them that that sound is the phone

>ringing?? I'm sorry to ask so many questions and to write so much.

>Allana is just saying " mama " and occasionally " daddy " , but they are

>approximations, and she doesn't use them consistently. I would love

>to get to know people going through similar experiences, or people

>who have " been there, done that. " I would love any input about the

>inconsistencies we are seeing with her responses when not aided, and

>why the audiogram would show only mild to moderate losses in the

>lower frequencies, but yet Allana doesn't respond much to anything.

>Why??? I better close now, or everyone will be so tired from reading

>my post, they won't be able to write me back, without taking a nap

>first LOL

>

>Hope to make some friends that understand what we are going through

>here.

>Thanks!!!! Bobbie (mother of Allana hearing loss from mild to

>profound)

>

Hi Bobbie, My name is Priscilla and My two year old daughter, Alesha

was born with a profound hearing loss.

I know what your going through. Alesha has been saying mum and mom

since she was around 10 months old or so but that was just about it.

Alesha also had some gross motor delays, late sitting up and walking.

She got her first set of hearing aids at 13 months but those didn't

help at all but she just went through a trial with the impact aids and

she done great with them so we're in the process of buying them.

We only had the impact aids for a 60 day trial but Alesha was still

inconsistent with responding to sound but we knew she had to be hearing

because of all the new sounds she had started making.

We took her to be tested in the booth before the trial was up because

even though we knew she was hearing, we didn't know at what level.

She responded to all speech frequencies at 40db and they got a maybe

at 35db.

So she was hearing even better then we thought. I know in time after

she gets used to hearing she will respond better but I have to keep

reminding myself that just because she can now hear doesn't mean

her brain knows what to do with it. She went two years without hearing

anything, even longer if you count what they hear while your pregnant.

So this is all new to her and she'll have to learn to listen and learn

that sound has meaning.

I was wondering about a few things, I hope you don't think I'm a snoop.

Since your daughter has had her hearing aids, Is she making new sounds

that she didn't before.

Have you noticed if she still watches your mouth when you talk to her?

did she ever grind her teeth? if so, Is she still doing it?

This was some of the changes we seen in Alesha and that is why I was

asking you.

Well if you would like to e-mail me, Please do. My address is

sextonfamily75@...

I'm sure we could find alot to talk about. Priscilla

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[Guest guest]

Hi Bobbie,

We're pretty new to all of this too. My son was diagnosed with

bilateral sensorineural HL at the end of August. He has mild loss in the

lower frequencies which then plunges to moderate/severe above 1000 hz. Our

audiologist and the ENT we saw both told us that this is a somewhat common

pattern...although we are just beginning to do further investigation into

the etiology of ' loss. (We just want to know whether or not the loss

is progressive.)

Carol

-----

To: <Listen-Upegroups>

Sent: Sunday, October 01, 2000 2:38 PM

Subject: Re: I am a newbie here!!

> Suzette,

>

> I LOVE your name. It almost brings tears to my eyes. My

great-grandmother's

> name was Suzette, she was a wonderful person.

>

> Thanks for introducing yourself. I will probably have lots of questions,

as

> time goes on. Hearing loss is very confusing. Before we found out about

> Allana's hl, I never realized it would be so complex. (frequencies, etc.)

> I'm still very surprised that the ABR, done 1 month ago, showed only a

mild

> loss in the lower frequencies, but it quickly dropped off, to a

> severe/profound loss. Do you (or anyone else out there) know if this is

> common with children with severe/profound loss to have a mild/moderate

loss

> at low frequencies?? Does anyone have children with this kind of

> configuration?

>

> Talk to you soon.

> Bobbie : )

>

>

> All messages posted to this list are private and confidential. Each post

is the intellectual property of the author and therefore subject to

copyright restrictions.

>

>

[Guest guest]

In a message dated 9/30/2000 3:06:36 PM Eastern Daylight Time,

BJBaker25@... writes:

<< Hope to make some friends that understand what we are going through

here.

Thanks!!!! Bobbie (mother of Allana hearing loss from mild to

profound)

>>

Welcome to the list Bobbie. When my daughter first got her hearing aids, I

noticed that when she didn't wear them, she was noticing sounds she didn't

notice before. I was told that this is auditory memory. Now that she can hear

a sound, even without the aids she can remember it when it happens. Quite

interesting. My daughter is 4 (5 in november). She has been wearing hearing

aids for about 2 years now and her speech is at about the level of a 23 month

old. She seems to be catching up pretty well. I wish the best for you and

your children. This is a great list - you'll love participating in it.

Suzette

[Guest guest]

Suzette,

I LOVE your name. It almost brings tears to my eyes. My great-grandmother's

name was Suzette, she was a wonderful person.

Thanks for introducing yourself. I will probably have lots of questions, as

time goes on. Hearing loss is very confusing. Before we found out about

Allana's hl, I never realized it would be so complex. (frequencies, etc.)

I'm still very surprised that the ABR, done 1 month ago, showed only a mild

loss in the lower frequencies, but it quickly dropped off, to a

severe/profound loss. Do you (or anyone else out there) know if this is

common with children with severe/profound loss to have a mild/moderate loss

at low frequencies?? Does anyone have children with this kind of

configuration?

Talk to you soon.

Bobbie : )

[Guest guest]

In a message dated 10/1/00 5:39:19 PM Eastern Daylight Time,

BJBaker25@... writes:

> Does anyone have children with this kind of

> configuration?

>

> Talk to you soon.

> Bobbie : )

Hi Bobbie, my son, now 7 has a mild to profound loss in his right ear and

moderate to profound in his left. But the slope is more like a cliff, he is

only mild/moderate at 125Hz and 250Hz, then by 500 he is in the profound

range!

He is now implanted and doing well receptively, because of oral motor

difficulties, his speech is very delayed but he can sign so uses sign to

expressively!

Any questions? Fire away! Welcome to the list,

Orla

[Guest guest]

My son has a mild loss at 250 and 500, then it drops sharply to 60 dB at 750

Hz and on down to 100-110 at 2000 Hz. That's in one ear only; his other ear

is severe-profound across the board. We have been told that this kind of

loss is unusual; fortunately, they are now coming out with hearing aids that

are flexible enough to fit this loss. If you have any questions, let me

know!

Thanks for introducing yourself. I will probably have lots of questions, as

time goes on. Hearing loss is very confusing. Before we found out about

Allana's hl, I never realized it would be so complex. (frequencies, etc.)

I'm still very surprised that the ABR, done 1 month ago, showed only a mild

loss in the lower frequencies, but it quickly dropped off, to a

severe/profound loss. Do you (or anyone else out there) know if this is

common with children with severe/profound loss to have a mild/moderate loss

at low frequencies?? Does anyone have children with this kind of

configuration?

Talk to you soon.

Bobbie : )

[Guest guest]

In a message dated 10/1/2000 5:39:10 PM Eastern Daylight Time,

BJBaker25@... writes:

<< Do you (or anyone else out there) know if this is

common with children with severe/profound loss to have a mild/moderate loss

at low frequencies?? >>

My daughter's loss is mild to moderate in the lower frequencies and severe to

profound as the frequencies get higher. I don't think that it's strange.

Lower frequency sounds are supposed to be easier to hear (the bass in music,

banging on the floor, couch or wall, etc.). While we couldn't get to

respond to her name in the beginning, she would respond to music right away.

We would have to bang on the floor or couch or wall and then say her name so

she would get used to hearing it. Every child's audiogram will be different.

's makes a downward slope and then it goes up a little at the end. In

her left ear unaided there were few measurable responses.

Suzette

[Guest guest]

Hello Bobbie and Welcome to a wonderful list. Sorry it has taken me so

long to Welcome you, I am a little behind on my emails. The support and

information you

receive here is unbelievable. We have two children also 6 (hearing)

le 2 (moderate to severe in both ears). We live in Glenolden Pa, which is

right outside

of Philadelphia. le was diagnosed at birth. She was born 7 weeks

premature. She wasn't aided until she was 7 months old due to inconsistency in

the ABR test.

She had 4 ABR's with different results. le just started wearing hear aids

all day about two months ago. She has had 16 ear infections and two sets of

tubes. She

had alot of down time with the aids due to the ear infections, she had alot of

drainage with the infections so we weren't able to use the aids alot of the

time. It

seemed like as soon as we were able to get her use to wearing them another

infection popped up. She also had severe reflux, which I feel played a big part

in her ear

infections. le also has alot of other issues also. She was on an apnea

monitor for 7 months. She had very low tone which is now corrected but still

receives

PT. She is blind in her left eye with a rare Eye Disorder called 's

Anomaly, (it's a cloudy film covering that covers most of her pupil, which

restricts the vision

in that eye). She has a ridge on her aortic valve which is closely monitored,

and had PDA at birth (and open blood vessel in the heart, which closed on it's

own,

reflux, torticolisis (neck muscle causing head to lean to one side) But through

stretching exercises it's much better and hardly noticeable. Developmental

delays.

Sacral dimple on her spine, (looks like a second rectum hole). She has T-5

hemi- vertebrae ( triangular and not square) which if her spine curves she will

need a bone

fusion to her spine. So far so good, it's closely monitored. She has some

sensory issues which she is doing much better with. Her fine motor stills are

also delayed,

Her speech is at 18 month level but just started putting words together. She

has some 2 word phrases and some 4 word phrases. le has been in Early

Intervention

since she has been two months old.

Even though le's loss is much different from your daughters, through

listening and hearing therapy at such an early age she responses to so much even

when she is

not aided. It use to scare me to death. That they were wrong. I could say go

get your doll and she would. If you called her name she would respond. She

always knows

when the phone rings or the door bell sounds. (aided or not aided) But I think

it's just that we constantly trained her to listen to things that made noise we

would

say, le listen the phone is ringing. Or if someone knocked on the door.

I would take her to the door and say listen someone is knocking. le was

also a

late walker (16 months). Don't be sorry for asking questions that is what this

list is all about. That is how we learn. The experience and information that

is

provided here is better than you can get at the professionals. They have all

been there and done that. No question is stupid. I know in the beginning I use

to feel

dumb and not ask, or I would email someone privately and ask, you don't have to

do that here. Just ask away. They help me all the time. I will be learning

forever it

seems. Every time I feel a little comfortable with all of it something else

pops up that is out of hands. le always babbled and babbled alot, she

would not stop

all day. When she got her aids she kind of stopped talking all together I was

so scared, and I was told she is listening she never heard it that way before. I

had my

doubts but they were right. She has so many more sounds even within the last

two months. Tonight she said in her highchair. " I want to get down " I almost

fell on the

floor. I couldn't believe it. The other day she started saying LaLa yellow,

Big Bird yellow. She hums alot of things but probably has 25 words. She is

just

starting to try different words when you say them to her. Some she won't try,

but others she gives it a shot. Hang in there. We are on a long journey but it

will be a

rewarding one. Sorry it's so long.

In the beginning I read all I could about hearing loss. I also would recommend

you and all the other new people on this list to contact the Clinic,

it's a

free service, do at home program videos and hand outs on the oral approach, lots

of great information. . I don't have there web address handy, but they also

have a 800

number you can call. I am sure someone on this list has there information, it's

very informative and it's free.

Take Care

Colleen

Mom to 6 (hearing) le 2 (hoh)

>