Re: Any ideas ??

[Guest guest]

Hi - you've had such a hard time with this!

Were it me, I'd touch base with the three professionals - if you can email all

three at the same time, that might be good - and tell them what you've told us.

That is, you're getting different answers from all three of them and you're

confused and need to have better information. It's to the point I'd be mad!

heck - I'm mad on your behalf!

When my younger son had his ABR, it was sedated and the results were right on -

that is to say, he was diagnosed at that time with a profound loss and that's

indeed what he has. I think Lydia suggested a second opinion. If you're in an

area to do that, that's good advice too.

continue keeping us posted.

Barbara

--- You wrote:

I dont understand why I had a neurologist say Ricky

likely has Nurosensory loss and the ENT telling me he

likely has " severe to profound loss " and both saying

he will likely need aids when the audiologist the

other days says quite the reverse???

Now the audiologist says to me he has a mild loss in

the low tones, suggesting its from the fluid.... or

what she assumes is the blockage. She could not test

the other ear (the right one) so she cannot say if

there is more loss there or if there is any.

She said that " only one good ear is needed for

language development " .... is that true?

Also, is there a possiblilty that all this is really

due to fluid and that when its gone, by way of meds

and/or tubes, he will be fine?

If so why did the ENT (both of them) state otherwise?

--- end of quote ---

[Guest guest]

Dear ,

I am so sorry you don't have a definitive answer about Ricky's

hearing loss. That is so frustrating! Something like this happened

to us, and I think in retrospect, I should have insisted on a second

opinion sooner. I think 2+ months is too long to wait, and if the

loss is severe, that is a lot of sound to be missing out on for a

long time. That is a lot of songs and stories that he will need to

wait to hear, and it has been shown over and over that the sooner

kids get hearing aids or cochlear implants, the less significant

their speech and language delays are and the faster they catch up.

(BUT, if the ABR is correct, then this is not as big a concern of

course.) I think if it were me, I would be persistent with my ENT

about the blender, though, and say, " Look -- this ABR result just

doesn't make sense with what I am seeing at home and here is why. I

need an answer sooner rather than later because if the loss is

severe, he needs to hear better now. " Besides, it is so hard on you

emotionally to not know.

One nice thing to keep in mind is that in a short time, you will not

only have to rely on the ABR and OAE. Ricky will be old enough to

do play audiometry. At around one year of age, kids can sit in a

sound booth on your lap and learn to put a block in a box when they

hear a sound. The audiologist adjusts how loud the sound is and

does this test for high, low, and inbetween tones at different

loudness levels. The child is rewarded with a little dancing bear in

the corner of the room (or something like that) that lights up and

dances when they do it correctly, so he or she learns that if they

do the task right, they will get to see the bear again. I realize

that Ricky has some developmental delays so it may be a little

longer but maybe not. Some kids can start doing this at 9 months.

(I am thinking you know all about this test because you've probably

done it with Olivia, right?)

So I know that even a week seems long to wait, but soon you and your

doctors will be able to do get more information with this kind of

test. This kind of test will be more like what you are observing

with him at home.

When the audiologist did the low and high tone tests, did he or she

tell you what frequency the tones were at? Did he or she give you a

decibel (loudness) level at which his brain responded? If so, take

a look at this Speech Banana to see what Ricky might be hearing or

missing:

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

Best wishes,

Lydia

, almost 8, deaf CI user

Colin, 11, hearing

[Guest guest]

<<Why is it if he has supposedly no ear infections (he

has been checked a few times as he had sever chest

colds a few times earlier in the fall) and yet he has

all this fluid buildup??>>

My Liam was born totally deaf. He now is only mildly deaf. They could never

tell me any defenite reason for his hearing loss, and why it seemed to

improve. The only reason given as a guess was fluid build up from birth. He

had a fistula in his right ear that was closed in sept. 2002. It wasn't

until after that surgery (about 4 months later) that he got his first ear

infection. Of all the ear infection he has had since almost 3 years old to

now (he just turned 4) only 2 have been in the left ear..

I guess I am trying to say you can have fluid without infections, and from

what I gathered you can have congenital fluid, which is actually build up of

Ammonitic Fluid in the ear.

R

Mom to:

Jed (1/22/93) Tic disorder, Asthma, Heart Murmur.....

Liam (12/12/00) SGA/RSS, Asthma, Epilepsy, Hearing Impaired, Sensory Issues,

Food Allergies, Heart Murmur...

Orlando Fl

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