Re: Patty's I got a queistion

August 31, 2004

Bonnie,

's ears are similar to Patty's. 's eustacian tubes have never

worked. She lost hearing from the age of 2 to 6 yrs then is seemed to level off.

She has about 45 % hearing in each ear. Her ears were too tiny for tubes until

she was about 12. One ear now has a permant tube and the other a kind of a

built in defect that serves the same purpose. She still get frequent ear

infections. Some times, like Bonnie said, oder and hearing loss are the only

clue. I agree, if and I have learned anything, water is her worst enemy.

When she was small, I was the " ear police " at bath time. She wore ear plugs with

tape over them and never dunked her head. She now uses cotton balls because we

can't get a good fit with a swimplug. She is very careful. If she even thinks

she has water in her ears she uses drops. I would like more informations about

antibotic ear drops too. Do they cause hearing loss?

It's great to have Patty on the list.

Lynn

Patty's I got a queistion

I have to jump in here. Obviously I had Patty join this list. I feel it is

terribly important for her and it appears she is already finding information,

comfort and a connection. You guys are fabulous. But I knew that. It should

be interesting having the both of us on.

But with her hearing, we were told she is loosing it because of her numerous

infections which she still gets. She also gets growths and polyps which used

to be suctioned. Her ear hurts now because it is irritated. I don't think

she has kept it as clean as she could.

Because of her submucus cleft her eustachian tubes don't work and she often

gets fluid in her ears even without an infection. She has had countless tubes

and reconstruction (her hearing bones were fused) which finally have left her

without ear drums. This is a good thing so they can drain. It is just vital

that she doesn't ever get water or anything in her ear canal.

Her hearing losses are both conductive and sensorineural. There has been

little changes with her sensorineural loss. It is her conductive losses

(because

of infections which damage the inside) that is the cause for her loosing her

hearing.

I have never heard of antibiotics causing any losses. I will defenately look

into that. What about drops? Patty has been on so many that now only a few

work anyway. I don't think they were on the list.

Another point I have to make is although I don't remember the degree losses

she had a 9% and 41% loss as a child. But she always dropped off the charts

between 1000 and 2000Hz. Check that out for your children. Although she

could

hear she couldn't hear high pitch sounds. That meant she can't hear s, sh ,

ch t, th, z.....

The last time Patty was checked she has a 43% and 100% loss.

Again, I don't want to scare anyone. Just keep an eye on infections and

fluid. By the way we never know when she has an infection except for an order

and

her hearing lessens. She doesn't get the pain like others. But isn't that

like all the kids here! Oh, and her behavior worsens. She is less patient

and

she moves around tons.

Not every CHARGE child looses their hearing. Yes, I wish I knew more.

Apparently so does Patty. But we will figure it out. Life will happen on

it's own

and we just have to make the best of it.

Oh, and thank you Martha. I'll have her call and see if she can get an

appointment.

Like I told Patty, you guys are great!

Bonnie

August 31, 2004