Re: Intro/Q re: further loss

[Guest guest]

Hi Everyone

I'm new to this board and wanted to introduce myself and ask a question.

I'm Leigh, and dh and I have 2 beautiful children, , who's 2 1/2 and

Ellie who is 17 mo. We live in Northern CA. My 17 mo. old dau was just

diagnosed with mild SN loss which we prob wouldn't have even caught except

that it was compounded for a long time with additional conductive loss

(putting her total loss at who knows where) from ear infection/middle ear

fluid. I put her ear infection dates on the calendar for the past yr and

we're currently in the longest stretch without middle ear fluid (going with

the premise that it takes approx 10-12 weeks to drain following infection).

It's amazing to see our little girl seemingly come to life - so bubbly and

happy. She's even started saying " mama " with a bit more deliberateness

just in the past few days. Ellie came to us thru Intl' adoption and so we

didn't have the privilege of sharing her first 6 mo. of life, so there are

a few unknowns about her past med history (although her birth country

provided excellent medical/foster care until I brought her home). I've done

as much reading on hearing loss as possible these past few months as we've

waited for tests, etc..and I do occasionally read about individuals who

steadily lose hearing. And I believe I've seen it in a few of your posts.

Is this pretty typical? Our ABR is scheduled for the end of the month and I

guess that they can fit Ellie with a hearing aid after that?? How often

then, with small children, o do the hearing aids need to be re-done (of

course assuming they're not flushed down the toilet!)? My daughter is

extremely active - a climber, and of course hates anything to do with her

ears. I know it's gonna be a challenge to keep it in. They may give us a

choice on whether to use one or not, but given her first year's probable

great loss, I think she'd benefit tremendously as we play catch-up. Any

thoughts? Thx so much.

Leigh

[Guest guest]

Hi Leigh,

Welcome to the list. My dau wasn't identified until Kindergarten but they now

believe she may have had a mild loss at birth. She has progressively lost

hearing with no known cause. I'm not sure on the statistics on progressiveness

(hmmm...that would be interesting to find out) but this was the case for us. We

do re-evaluations on hearing every 6 months -- initially so that we could

determine if the loss was stable and then subsequently to monitor the

progression of the loss. The programming on her aids is tweaked every time her

loss changes -- that might be every 6 months or every 2 years -- just depending

on how she's doing. As far as the aids are concerned...I generally read they

should be replaced every 3 to 5 years. Personally, if possible, I'd err on the

side of 3 years since the technology improves fairly rapidly.

Are there plans to do some research, testing, eval into the possible causes of

your daughter's loss? Not that this always gives us an answer...but it may help

with planning and treatment if they can find something.

Glad to have you on the list.

Pam

Re: Intro/Q re: further loss

Hi Everyone

I'm new to this board and wanted to introduce myself and ask a question.

I'm Leigh, and dh and I have 2 beautiful children, , who's 2 1/2 and

Ellie who is 17 mo. We live in Northern CA. My 17 mo. old dau was just

diagnosed with mild SN loss which we prob wouldn't have even caught except

that it was compounded for a long time with additional conductive loss

(putting her total loss at who knows where) from ear infection/middle ear

fluid. I put her ear infection dates on the calendar for the past yr and

we're currently in the longest stretch without middle ear fluid (going with

the premise that it takes approx 10-12 weeks to drain following infection).

It's amazing to see our little girl seemingly come to life - so bubbly and

happy. She's even started saying " mama " with a bit more deliberateness

just in the past few days. Ellie came to us thru Intl' adoption and so we

didn't have the privilege of sharing her first 6 mo. of life, so there are

a few unknowns about her past med history (although her birth country

provided excellent medical/foster care until I brought her home). I've done

as much reading on hearing loss as possible these past few months as we've

waited for tests, etc..and I do occasionally read about individuals who

steadily lose hearing. And I believe I've seen it in a few of your posts.

Is this pretty typical? Our ABR is scheduled for the end of the month and I

guess that they can fit Ellie with a hearing aid after that?? How often

then, with small children, o do the hearing aids need to be re-done (of

course assuming they're not flushed down the toilet!)? My daughter is

extremely active - a climber, and of course hates anything to do with her

ears. I know it's gonna be a challenge to keep it in. They may give us a

choice on whether to use one or not, but given her first year's probable

great loss, I think she'd benefit tremendously as we play catch-up. Any

thoughts? Thx so much.

Leigh

[Guest guest]

> I know it's gonna be a challenge to keep it in.

Check out this page for some ideas:

http://www.listen-up.org/haid/aids-out.htm

> I think she'd benefit tremendously as we play catch-up.

She probably will (and this comes from an adult with a mild/moderate hearing

loss). You can read more about mild hearing losses here:

http://www.listen-up.org/haid/mild.htm

As for flushing them down the toilet, if they're still under warranty, check

with your audiologist. Many times the warranty will cover such losses. Our

son's did.

-Kay

[Guest guest]

Hi

My daughter was also internationally adopted. Jessie came home at 1 year and has

had hearing aids since she was 14 months old; she is now 22 months old.

My audi told me that 20-25% of children have a progressive loss. I was also told

that her hearing aids should last about 5 years. I'm not sure how accurate this

is, but it is what I was told.

Welcome to the group. I have found the group and the web site to be tremendously

helpful.

H.

Re: Intro/Q re: further loss

Hi Everyone

I'm new to this board and wanted to introduce myself and ask a question.

I'm Leigh, and dh and I have 2 beautiful children, , who's 2 1/2 and

Ellie who is 17 mo. We live in Northern CA. My 17 mo. old dau was just

diagnosed with mild SN loss which we prob wouldn't have even caught except

that it was compounded for a long time with additional conductive loss

(putting her total loss at who knows where) from ear infection/middle ear

fluid. I put her ear infection dates on the calendar for the past yr and

we're currently in the longest stretch without middle ear fluid (going with

the premise that it takes approx 10-12 weeks to drain following infection).

It's amazing to see our little girl seemingly come to life - so bubbly and

happy. She's even started saying " mama " with a bit more deliberateness

just in the past few days. Ellie came to us thru Intl' adoption and so we

didn't have the privilege of sharing her first 6 mo. of life, so there are

a few unknowns about her past med history (although her birth country

provided excellent medical/foster care until I brought her home). I've done

as much reading on hearing loss as possible these past few months as we've

waited for tests, etc..and I do occasionally read about individuals who

steadily lose hearing. And I believe I've seen it in a few of your posts.

Is this pretty typical? Our ABR is scheduled for the end of the month and I

guess that they can fit Ellie with a hearing aid after that?? How often

then, with small children, o do the hearing aids need to be re-done (of

course assuming they're not flushed down the toilet!)? My daughter is

extremely active - a climber, and of course hates anything to do with her

ears. I know it's gonna be a challenge to keep it in. They may give us a

choice on whether to use one or not, but given her first year's probable

great loss, I think she'd benefit tremendously as we play catch-up. Any

thoughts? Thx so much.

Leigh

[Guest guest]

<<As for flushing them down the toilet, if they're still under warranty, check

with your audiologist. Many times the warranty will cover such losses. Our

son's did.>>

Our warranty (through Oticon) supposedly covers such things as well--we were

told ANY loss or damage for ANY reason. When we bought them, we got the first

year of coverage from the company and then our audi supplied the second year

(same policy). This year we were offered the opportunity to " renew " the policy

and we did. I'm now about to find out just how good it is because after 2 1/2

years of NO losses or damages, one aid just vanished last week. After a week of

frantic searching (yes, even through the dogs' " business " every day for 4 days),

I have to make the call...

Sigh.

Carol

[Guest guest]

> Our warranty (through Oticon)

Oticon is a pretty reputable company. The only downside to their being

replaced this way is that the replaced hearing aid is no longer covered for

such losses.

Hang in there. Wishing you much better days ahead.

Hugs,

Kay

[Guest guest]

My daughter is 14 months old and has had bilateral hearing aids since she

was about 6 months old. It has been a real challenge keeping her aids in.

Now that she is more active it has been more of a challenge. For the first

few months it worked to keep a bonnet on her head to cover them. This way

she could not find them and they stayed in. She is too active now to do

this. She gets feedback with her bonnet on now. There are days that they

stay in all day long and there are other days where she looks at you and

hooks her little finger in them and flings them across the room with a smile

on her face. The only real recommendation for you is to find something

(huggy aids, fishing line, critter clips etc.) that keeps the aids attached

to her body. That way when the inevitable happens you don't spend all day

looking for the lost aid. Believe me we have done this on numberous

occasions. Anyway, for as far as how long will it be until she needs

replacements, it depends on how fast she grows. We have to go in every 3

months to get new molds done. If we wait much longer than that she will

have time when she won't have aids in at all because they don't fit correct.

If you have a good audi you will find the right time for your daughter.

As far as further loss, I am still waiting. My daughter has not lost more

hearing yet. I say yet because it may happen and it may not. We are a

little different than some because we know where her loss came from. She

had bacterial meningitis when she was 2 1/2 months old and this caused her

hearing loss. This has been a long response. Sorry sometimes I get a

little wordy.

Re: Intro/Q re: further loss

> Hi Everyone

> I'm new to this board and wanted to introduce myself and ask a question.

> I'm Leigh, and dh and I have 2 beautiful children, , who's 2 1/2 and

> Ellie who is 17 mo. We live in Northern CA. My 17 mo. old dau was just

> diagnosed with mild SN loss which we prob wouldn't have even caught except

> that it was compounded for a long time with additional conductive loss

> (putting her total loss at who knows where) from ear infection/middle ear

> fluid. I put her ear infection dates on the calendar for the past yr and

> we're currently in the longest stretch without middle ear fluid (going

with

> the premise that it takes approx 10-12 weeks to drain following

infection).

> It's amazing to see our little girl seemingly come to life - so bubbly and

> happy. She's even started saying " mama " with a bit more deliberateness

> just in the past few days. Ellie came to us thru Intl' adoption and so

we

> didn't have the privilege of sharing her first 6 mo. of life, so there

are

> a few unknowns about her past med history (although her birth country

> provided excellent medical/foster care until I brought her home). I've

done

> as much reading on hearing loss as possible these past few months as we've

> waited for tests, etc..and I do occasionally read about individuals who

> steadily lose hearing. And I believe I've seen it in a few of your posts.

> Is this pretty typical? Our ABR is scheduled for the end of the month and

I

> guess that they can fit Ellie with a hearing aid after that?? How often

> then, with small children, o do the hearing aids need to be re-done (of

> course assuming they're not flushed down the toilet!)? My daughter is

> extremely active - a climber, and of course hates anything to do with her

> ears. I know it's gonna be a challenge to keep it in. They may give us

a

> choice on whether to use one or not, but given her first year's probable

> great loss, I think she'd benefit tremendously as we play catch-up. Any

> thoughts? Thx so much.

>

> Leigh

>

>

>

[Guest guest]

Dear Leigh,

Just commenting on your 'flushing down the toilet' concern. My daughter is 2 1/2

and has had her HA's since 12 months old. Yes, she pulled them out over and over

in those early days (it took 4 months before she left them in for most of the

day) but she has never put them in the toilet thank goodnes. The biggest worry

was if she threw them down on the floor, that someone might tread on them. I did

try the clips/cords, but that just gave her something extra to pull on so I gave

up on that idea. Now that she is a bit older and understands that her HA's are

just a part of her (like clothing), she leaves them in all day (what a relief!).

She also knows when it's bath time to remove them and give them to me, without

me having to ask so it hasn't taken all that long for me to stop worrying as

much about the fate of her HA's. I hope you never need to claim on insurance in

the future, but I just wanted you to know that it is possible for HA's to

survive those toddler months.

Good luck and take care,

Kerryn (Melbourne, Australia)

(, 2.5, mod loss)

How often

then, with small children, o do the hearing aids need to be re-done (of

course assuming they're not flushed down the toilet!)? My daughter is

extremely active - a climber, and of course hates anything to do with her

ears. I know it's gonna be a challenge to keep it in. They may give us a

choice on whether to use one or not, but given her first year's probable

great loss, I think she'd benefit tremendously as we play catch-up. Any

thoughts? Thx so much.

Leigh