Why?

[Guest guest]

Hello. My name is Lynn. I have a 5 year old that was diagnosed

last year w/moderate, bilateral SNHL. She has adjusted well and

uses hearing aids w/the FM at school. Her speech is great. We saw

an ENT at diagnosis and he ran a bunch of tests. No one can tell us

if she was born w/a hearing loss or if it just happened. No one can

tell us if it progressively gets worse or will remain stable

(although it has remained stable since diagnosis). The ENT and

Opthamologist recommend to check her annually for some " syndromes "

that may present in the second decade of life. My kid is doing

great, but I don't understand why they can't tell us more

information or what to expect for her. I'm ok during the day and

overjoyed that she is doing so great, but every so often when I

can't fall asleep at night, I ponder these questions. I feel

frustrated. I know it's kind of pointless to worry/wonder about the

past and things are going so well that I should focus on that, but

has anyone had similar frustrations with not be able to get answers

and wondering what it all means? Also, do you ever wish that when

you were at the park or the mall that your kid could me just one kid

with hearing aids? We saw a PBS show this morning and my kid was so

excited because there was a little girl on there w/hearing aids. My

daughter also says, " Next year when I'm six, I won't need these

hearing aids anymore. " I think she thinks her hearing will improve

as she grows. How do you talk to your kids if your not sure what's

going on yourself? Any suggestions welcome. Lynn

[Guest guest]

I can understand how you feel. My daughter, now 6 years old, was born 6 weeks

early weighed 2 lbs 13 oz, was born with only 2 digits on each foot, and had a

skin condition. No one has EVER been able to tell us why or what will happen

next. We went to Duke and UNC-Chapel Hill, but no answers, it was always wait

and wee, see you in 6 months. So we just kept waiting and going to doctors. We

still have no idea why she is the way she is. We just did the best we knew how.

No one near us or anywhere else had been through teh same thing we have been

through. At 24 months we questioned her hearing and was told that everything

was fine. AT 3 we went to another doctor and they said her hearinh was ago. At

4 we wnet to another ENT and they said that something was wrong and got more

testing done. No one could ever tell us what was going on or why. We just kept

moving along doing the best we can do. She wers a HA, but no real benefit

except it amplfies the sounds around her.

We use ASL to communicate.

Keep doing what you are doing. If you don't feel comfortable with the ENT you

have go somewhere else for a second or third opinion. We are with our 4th.

I often want her to be just a normal kid, but then without all the things she

has she wouldn't be the same. There are times that I get upset, angry, and

wonder what she will be like in 2, 5, 10 years. I do not think that I will

ever not worry about these things.

Hope this helps you to know that there are others that are going through

similar things with the same emotions and feelings

Amy

Lynn lresn@...> wrote:

Hello. My name is Lynn. I have a 5 year old that was diagnosed

last year w/moderate, bilateral SNHL. She has adjusted well and

uses hearing aids w/the FM at school. Her speech is great. We saw

an ENT at diagnosis and he ran a bunch of tests. No one can tell us

if she was born w/a hearing loss or if it just happened. No one can

tell us if it progressively gets worse or will remain stable

(although it has remained stable since diagnosis). The ENT and

Opthamologist recommend to check her annually for some " syndromes "

that may present in the second decade of life. My kid is doing

great, but I don't understand why they can't tell us more

information or what to expect for her. I'm ok during the day and

overjoyed that she is doing so great, but every so often when I

can't fall asleep at night, I ponder these questions. I feel

frustrated. I know it's kind of pointless to worry/wonder about the

past and things are going so well that I should focus on that, but

has anyone had similar frustrations with not be able to get answers

and wondering what it all means? Also, do you ever wish that when

you were at the park or the mall that your kid could me just one kid

with hearing aids? We saw a PBS show this morning and my kid was so

excited because there was a little girl on there w/hearing aids. My

daughter also says, " Next year when I'm six, I won't need these

hearing aids anymore. " I think she thinks her hearing will improve

as she grows. How do you talk to your kids if your not sure what's

going on yourself? Any suggestions welcome. Lynn

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

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[Guest guest]

Hello Lynn! I'm Cherie. My now 8 year old was diagnosed at 5 with a mod to

severe SNHL. Your situation sounds so much like ours. We didn't know when or

how he lost his hearing. His speech was pretty good and that led the ENT to

think that his hearing had dropped steeply at some point and might do so again.

All his tests and consults came back fine. His genetic tests were all negative

for the genes they could identify. And like your daughter, he thought he would

not need his hearing aids forever. The only thing that is going to help you is

time. With time, you will become more knowledgable and comfortable. And after

a year or two of hearing test, you will begin to know what to expect and where

her hearing will be. It's very, very scary at first because you don't know what

to expect. But I promise you with time you will both be okay. 3 years later

and I don't think about it too much anymore. I get nervous when it's getting

close to a hearing eval, but other

than that, it's just become a normal part of life.

We got lucky last year because there was a new girl in 's class who also

had hearing aids. They shared an FM system. She's in his class again and it's

been the best thing for both of them.

Where are you located? Maybe you're close to someone on this list!

Cherie

Lynn lresn@...> wrote:

Hello. My name is Lynn. I have a 5 year old that was diagnosed

last year w/moderate, bilateral SNHL. She has adjusted well and

uses hearing aids w/the FM at school. Her speech is great. We saw

an ENT at diagnosis and he ran a bunch of tests. No one can tell us

if she was born w/a hearing loss or if it just happened. No one can

tell us if it progressively gets worse or will remain stable

(although it has remained stable since diagnosis). The ENT and

Opthamologist recommend to check her annually for some " syndromes "

that may present in the second decade of life. My kid is doing

great, but I don't understand why they can't tell us more

information or what to expect for her. I'm ok during the day and

overjoyed that she is doing so great, but every so often when I

can't fall asleep at night, I ponder these questions. I feel

frustrated. I know it's kind of pointless to worry/wonder about the

past and things are going so well that I should focus on that, but

has anyone had similar frustrations with not be able to get answers

and wondering what it all means? Also, do you ever wish that when

you were at the park or the mall that your kid could me just one kid

with hearing aids? We saw a PBS show this morning and my kid was so

excited because there was a little girl on there w/hearing aids. My

daughter also says, " Next year when I'm six, I won't need these

hearing aids anymore. " I think she thinks her hearing will improve

as she grows. How do you talk to your kids if your not sure what's

going on yourself? Any suggestions welcome. Lynn

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

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[Guest guest]

phine,

Sorry to be really late in responding to this - was up to over 2000 unread

messages in Listen-Up. I've switched to digest format in the hopes of catching

up.

My daughter has worn hearing aids for almost 3 years now. Hannah has received

speech therapy and had an FM system in school ever since second grade. She does

very well in school and also speaks well, but continues speech therapy for some

" cosmetic " issues such as " slushy s " (sounds like " th " instead of " s " ). The

speech therapist at school has not had much luck with this, and has suggested

that it will be hard to teach Hannah to change this sound because she does not

seem to hear the difference. My feeling is that it would be nice if they can fix

this but it is not a huge issue.

She is currently handed under a 504 plan because she does not have any learning

disabilities. I have been lucky that both public school districts I've dealt

with have offered the FM system and speech therapy right off the bat. I wonder

if other issues may come up as the amount of class discussion increases and work

gets more advanced in the upper elementary grades. So far, so good. The thing

that's trickier is social cues or overheard speech, which have been discussed on

the list before - even though she can understand speech pretty well with her

aids, I suspect there are subtleties like tone of voice which she does not " get "

as well as a normal hearing child. Right now she tends to use a bored or

sarcastic sounding tone a lot, sounding like she's 9 going on 12. I just try to

point it out when she does it and ask her to speak politely. I know it's partly

the age.

The main thing we did with Hannah at your daughter's age was to read to her a

lot. She didn't have hearing aids yet but I would put her on my lap and always

speak clearly and close to her better ear. Sometimes I would run my finger along

the words on the page as I read too. It probably helped that she is an only

child and got lots of attention. Also her hearing improved significantly after

she first got ear tubes around 18 months, at which time her vocabulary started

to take off. She did get services through the state (Vermont) early intervention

program at the time too, which included speech and occupational therapy (for

sensory issues and " different " thumbs) as well as a special needs preschool. We

ended up changing her to a normal preschool because she was so advanced and most

of the kids in the public preschool had more severe disabilities we felt they

were not giving her good models for speech or behavior.

I suspect your son will be fine, just be alert to how he is doing and things

you hear from school.

-

Re: Why?

- May I ask you how long has your daughter worn

her hearing aids? Does she receive speech therapy?

Wear an FM system? I am a mom of a 2 year old and he

has a mild/mod. loss as well. He has been wearing his

hearing aids since he was 3 months old. We were

fortunate he was picked up by the Newborn Screening at

the hospital. He is doing so great and speaking so

well, that for preschool he will likely not qualify

for any services. I am elated, but I am also nervous

since I want his great progress to continue. Any

advice word be great!