Re: another blow - progressive?

May 15, 2006

Our Ian has a progressive loss. We don't know why, no one can predict it's

progress or say if it will ever stop. We've seen some of the best doctors on

the east coast and they don't agree with each other. We have dueling diagnoses.

When we go to the audiologist, Ian is just fine. He takes it all in stride.

It's just another hearing screening for him. Which is exactly how we want it

to be for him. But for me, it's always a bit stressful. Ian's loss is usually

slow and predictable, but occasionally he has a sudden drop of some kind.

And I hate those.

Truthfully, I want it to either stop or just get where it's going NOW. I

don't like the not knowing. I'm a planner, a list maker. So this kind of loss

pushes my control-freak buttons. Honestly, after a while it is actually easier

to deal with. I used to have panic attacks on the way to the audiologist but

now I just get a bit nervous.

I need to learn from my son to be more laid back. We've taught him to not

worry over what he can't control. Now I need to learn to take my own advice.

Easier said than done when it comes to your kids. And I agree, it sucks.

Best -- Jill

May 15, 2006

In a message dated 5/15/2006 2:42:03 P.M. Eastern Daylight Time,

em2_mom@... writes:

Now I even find humor in the things Emmett thinks he heard. He always tells

us when he hears something that sounds off, and it usually is!

This is actually a game in our house. It started because my husband mutters.

He always has and half the time I can't hear what he's said so I would tell

him what I heard, which was never right. He also does what we call " zip code

changes " in the middle of conversations -- his mind wanders down a different

track from the rest of us while we're talking. And then he'll rejoin the

conversation from the middle of his private musings, and I'm clueless as to

which

zip code his wanderings took him off to.

Then with Ian's hearing loss, he tell us what he thought he heard, and then

correcting it to what we must have said.

Now, it's a game to mis-hear things, and we create a nonsense sentence. We

take things we barely heard and make them into something else just so we can

be silly. It's actually quite funny and it had a purpose for a while -- it

increased Ian's vocabulary by making him think of rhyming words to create his

silly sentences.

-- Jill

May 15, 2006

Oh Sara - you've had such an awful year! Have your kids had CT scans?

Why does your audiologist think it's progressive? As others have

suggested, you might consider genetic testing to see if they can figure

out what's up here. (genetic testing doesn't tell the whole story - for

many it does but for us it didn't, just so you know). And I'm with you

- a year between tests doesn't necessary show that a loss isn't

progressive.

I dreaded my kids losing more hearing maybe more than finding out they

couldn't hear - I understand how you feel. Although in a strange way,

when Tom *did* lose more hearing, it almost became easier because we

knew we'd pursue an implant at that point. I know that sounds weird...

Hang in - we're here for you!

Barbara

saraandchadd wrote:

> Ok - so I think this was harder to hear than to hear that both of my

> kids are HOH!!! But my audi spoke to someone else who is currently

> displaced to Canada and he is very concerned that their loss is

> progressive. Damn it. Does it ever end? So the audi is going on

> the assumption now that their loss is progressive although I'm sure

> we won't know for years to come. Hannah's last test did show her

> loss was stable but since it was only a year between testing this

> guy doesn't think it proves anything to us. Also - since their

> hearing was/or about normal at birth and now they are more moderate

> they think it is a safe assumption to make.

>

> That was so much harder to hear than to hear that both of them were

> hearing impaired!

>

> So my question - yes I have a question this time - I need info on

> this!!! If they are progressive what is the likely hood that they

> will progress to deaf? How long? What now?

>

> Oh - and the ball is rolling on the info for our son - they

> recommend him going to the local HOH school which I'm looking

> forward to - for my daughter they seemed very much against any other

> intervention but its a relief to know that my son will get

> everything he will possibly need at an earl age rather than having

> to fix the problems that no early intervention caused like in my

> daughter's case!

>

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>

May 15, 2006

Barbara Mellert Barbara.T.Mellert@...> wrote: " Have your kids had

CT scans? "

----no - they have not had CT scans. That will be our next step I suppose - we

tried with hannah - wouldn't do it - try to get it through Childrens and things

never fell into place - he was particularly looking for a disorder that causes

HL when someone is hit in the head - but that isn't an issue now I don't think.

" Why does your audiologist think it's progressive? "

-----for the simple fact that they were both " normal " at birth (well Hannah

passed her newborn screen which is all we have to go by and Jake was boarderline

at his last ABR in July testing at 25 dB) - and because it has only been a year

between Hannah's tests - the doc thinks there is a possibility that it will

still decrease just in more time.

" As others have suggested, you might consider genetic testing to see if they

can figure out what's up here. (genetic testing doesn't tell the whole story -

for many it does but for us it didn't, just so you know). "

------We're trying. They are looking for a particular lady who actually

specializes in hearing loss/genetic links. Currently her office is not up and

running its children's part of their testing - although when they return to New

Orleans this summer it might. So we are going ahead and getting the aids

because the further testing might take awhile.

" I dreaded my kids losing more hearing maybe more than finding out they

couldn't hear - I understand how you feel. Although in a strange way,

when Tom *did* lose more hearing, it almost became easier because we

knew we'd pursue an implant at that point. I know that sounds weird... "

--------this sucks to put it bluntely.