Hey Guys!

[krisy]

Hi everyone! I haven't been around much for a while,but the kids and I have a snow day!!!! I've been pretty busy. We found out a few months ago that my 7 year old daughter has been loosing her hearing. She has moderate severe loss in the right ear and moderate loss in the left. The hearing loss didn't become apparent until this past fall when she got a cold and she started blasting the t.v. and we had to talk into her ear for her to hear us. We have been to Cincinnati Children's Hospital a gazillion times the last couple of months and found out that her hearing loss is genetic.

She got her loaner hearing aids about a week and a half ago and is doing well with them considering she is 7 and suddenly has hearing aids hanging on the back of her ears and molds inside her ears. She will wear them several hours before asking to take them out for a little bit. She has been wonderful for all the tests and I am so proud of her. The doc says that my husband and I are both carriers of the hearing loss genes which is why she has it. My son did not get them however. He also said that he cannot guarantee that she will not completely loose her hearing,but there is only a 5 percent chance that she will.

It is nice to be here reading all the fiery debate about the upcoming election.

[Mr. P]

Hey Girl! Missed ya!

Sorry to hear about yer daughter.

Mr. P

[krisy]

Hey Girl! Missed ya!

Sorry to hear about yer daughter.

Mr. P


Hey hey P! Your one of the people I look forward to hearing from the most,ys big doll!!!:wink2:

Thanks for the thoughts on my daughter. I am actually very happy tho. They did a catscan on her, which which came out good, and ruled out other illnesses for the hearing loss. I was beyond relieved to hear that it was genetic and nothing else was causing it.

[Mr. P]

Hey hey P! Your one of the people I look forward to hearing from the most,ys big doll!!!:wink2:

Thanks for the thoughts on my daughter. I am actually very happy tho. They did a catscan on her, which which came out good, and ruled out other illnesses for the hearing loss. I was beyond relieved to hear that it was genetic and nothing else was causing it.

I'm NOT a doll, I'm a grumpy ole shit! :laugh2:

My brother had a loss of hearing at about the same age. It turned out to be enlarged adenoids. They removed them and everything was fine after that.
My best wishes to you and your family, I'm sure this isn't easy to see happen.

[krisy]

I'm NOT a doll, I'm a grumpy ole shit! :laugh2:


I'm sure this isn't easy to see happen.


We cried at first,when we didn't know what we do now. We thought she would go completely deaf. But with her pretty pink sparkly hearing aids,she is good.:banana:

[gabosaurus]

Hey, good to see you again.
My best friend and bridesmaid Katie was born deaf. She got a hearing aid, but had what is known as "parallel hearing," meaning that if there were two people talking, or two sources of sound, she couldn't detect which was which.
She got some sort of experimental implant about five years ago that restored her hearing. It's some sort of device that they surgically place inside your ear.
There are all sort of new medical procedures now. Check into them! :)

[krisy]

Hey, good to see you again.
My best friend and bridesmaid Katie was born deaf. She got a hearing aid, but had what is known as "parallel hearing," meaning that if there were two people talking, or two sources of sound, she couldn't detect which was which.
She got some sort of experimental implant about five years ago that restored her hearing. It's some sort of device that they surgically place inside your ear.
There are all sort of new medical procedures now. Check into them! :)

Nice to see you too,gabby.

The doctor said when children do go deaf these days,they can give them cochlear implants. He was very matter of fact about it. My mom has said to ask more too about if this can be corrected. I was so overwhelmed with all the info I was getting,I didn't ask the doc if there was a way to fix the hearing she had lost. They said it was permanent,so my first thought was that they couldn't. We are supposed to meet with a genetics expert at Children's who will explain it more to us. The doc was telling me gene names on the phone and throwing out a lot of scientific stuff that was over my head!!!

About you friend,that sounds rough. It seems it would be very difficult to have that kind of hearing loss. I'm glad to hear that she go it restored. I bet it really changed her world. Everyone couldn't wait to see how Savannah reacted to hers. The first thing she said was..."I can hear myself!!!"
Her speech should gradually get better they say,but I am enjoying th t.v. not being blared so loud I couldn't hear myself think,too!!!

[Mr. P]

Hey, good to see you again.
My best friend and bridesmaid Katie was born deaf. She got a hearing aid, but had what is known as "parallel hearing," meaning that if there were two people talking, or two sources of sound, she couldn't detect which was which.
She got some sort of experimental implant about five years ago that restored her hearing. It's some sort of device that they surgically place inside your ear.
There are all sort of new medical procedures now. Check into them! :)

I seem to remember Limbaugh did that..I forget what it was called, I just remember it worked for him.

[Kathianne]

Hey, good to see you again.
My best friend and bridesmaid Katie was born deaf. She got a hearing aid, but had what is known as "parallel hearing," meaning that if there were two people talking, or two sources of sound, she couldn't detect which was which.
She got some sort of experimental implant about five years ago that restored her hearing. It's some sort of device that they surgically place inside your ear.
There are all sort of new medical procedures now. Check into them! :)
chochlear implants, if the problem is neurological, they won't work.

I have moderately severe bilateral hearing loss, from birth. Yes, hereditary. It's a pain, but able to cope. Pretty much no deterioration from 3 years-50 years. A bit worse, but to be expected with aging.

[hjmick]

I seem to remember Limbaugh did that..I forget what it was called, I just remember it worked for him.

Cochlear implants.

[krisy]

chochlear implants, if the problem is neurological, they won't work.

I have moderately severe bilateral hearing loss, from birth. Yes, hereditary. It's a pain, but able to cope. Pretty much no deterioration from 3 years-50 years. A bit worse, but to be expected with aging.


Do you wear hearing aids,Kathianne?

[gabosaurus]

Not sure of all the scientific details. I know that, when I first met Katie, she couldn't listen to music or watch the TV. And she had to sit in front of every class in order to hear right.
I remember she said that, right after she got out of the hospital, her boyfriend brought over a CD. She was amazed that she could hear all the instruments and make out the vocals. Undoubtedly a life changing experience.

The human ear is so complicated, I am sure that every case is different.

[krisy]

The human ear is so complicated, I am sure that every case is different.


No doubt,lol!!! I had no idea there was so much to the ear. The doc said because my daughters speech has never been great,that the hearing loss was there from birth. She always seemed to hear fine tho,until recently. She was even tested by her pediatrician before she started speech classes and by school last year. Neither found any problems. Her ENT said those are not very good tests and either they just missed it,or her hearing just recently took a sharp decline.

[Kathianne]

Do you wear hearing aids,Kathianne?

Yep, two digital ones. About $6k every 5 years. Insurance doesn't cover. Seems cochlear implants may work for neurological based loses now, but only for profound loss.

[dan]

Welcome back, Krisy! I can't really say anything that hasn't been said already, but I hope things work out with your daughter.

[remie]

Yep, two digital ones. About $6k every 5 years. Insurance doesn't cover. Seems cochlear implants may work for neurological based loses now, but only for profound loss.

I feel your pain. I was around too much gunfire with no hearning protection growing up. Just got my new ones a month or so ago. Technology has certainly improved, but it doesnt come cheap. My new ones have the nanotechnology with 16 bands. You can tune them to the decibel range where your hearing loss lies. Mine is kids and womens voices.....go figure!!
The best thing I have found with the new technology is the supression feature in loud enviornments like ballgames and concerts. My old ones used to make me cringe in loud enviornments but with the new ones no problemo.

[Kathianne]

I feel your pain. I was around too much gunfire with no hearning protection growing up. Just got my new ones a month or so ago. Technology has certainly improved, but it doesnt come cheap. My new ones have the nanotechnology with 16 bands. You can tune them to the decibel range where your hearing loss lies. Mine is kids and womens voices.....go figure!!
The best thing I have found with the new technology is the supression feature in loud enviornments like ballgames and concerts. My old ones used to make me cringe in loud enviornments but with the new ones no problemo.

Yep, these are programmed to hear music ranges, while filtering things like dishes going into the sink or silverware 'clicking.' Still so many noises to filter out. I hear the fans on furnace, oven and refridgerator; stuff I never heard before and analogue/early digital didnt pick up. Sort of annoying.

Like other people walk into the house and take off their shoes, I take out my hearing aids, quiet world. ;)

[krisy]

I
The best thing I have found with the new technology is the supression feature in loud enviornments like ballgames and concerts. My old ones used to make me cringe in loud enviornments but with the new ones no problemo.


The aids my daughter has right now are loaner hearing aids and are used. That is one thing bothering her is loud noise. Also,they do not stop feedback,so putting a hat on has become annoying for her.

Her new hearing aids that she is getting hopefully in the next month are newer. They are about 2 grand each. The audiologist said they will stop their own feedback and put a cap on loud noises. They will also be pink to match her pink sparkly ear molds:)

[krisy]

Welcome back, Krisy! I can't really say anything that hasn't been said already, but I hope things work out with your daughter.

Hey Dan!!! :dance:

Thanks a bunch:)

[manu1959]

all the best to you and your family......

[Kathianne]

The aids my daughter has right now are loaner hearing aids and are used. That is one thing bothering her is loud noise. Also,they do not stop feedback,so putting a hat on has become annoying for her.

Her new hearing aids that she is getting hopefully in the next month are newer. They are about 2 grand each. The audiologist said they will stop their own feedback and put a cap on loud noises. They will also be pink to match her pink sparkly ear molds:)

Yep, same as I have, they shut down. I have currently about a 71% loss in both ears. I cannot stand loud noises, to a detriment with amplification. The audiologist picked up on that this time, we went through a series of 4 weeks, upping it slowly with me keeping them in at least 12 hours per day. It was exhausting.

I've always had the loss, the best it was was at 67% loss, in 4th grade, (see what I mean, not much deterioration over the years?) Fortunately I had enough hearing to pick up speech, though I've always been a 'visual' rather than 'audio' learner. I was a riot to my friends in school, 'my lyrics' were always 'way different' than what they heard. :cool: Often more interesting, definately weirder, consider the source!

I never needed speech, though some sounds I really didn't hear right, ever. "Button", I always heard, "buddin". Perhaps it's the midwest accent, no one ever picked up on that type of problem, till I had a speech roomate in college. She said, "It's 'But ton'. Cool, I could do that.

I still prefer conversations with one or two. It's funny to the kids at school, they know of my hearing problem and they think it's weird that I have less tolerance for noise than the other two hearing teachers. :laugh2: They've learned though, if they keep their voices down, they can get away with alot! Their problem is that I do read lips! ;)

[krisy]

Yep, same as I have, they shut down. I have currently about a 71% loss in both ears. I cannot stand loud noises, to a detriment with amplification. The audiologist picked up on that this time, we went through a series of 4 weeks, upping it slowly with me keeping them in at least 12 hours per day. It was exhausting.

I've always had the loss, the best it was was at 67% loss, in 4th grade, (see what I mean, not much deterioration over the years?) Fortunately I had enough hearing to pick up speech, though I've always been a 'visual' rather than 'audio' learner. I was a riot to my friends in school, 'my lyrics' were always 'way different' than what they heard. :cool: Often more interesting, definately weirder, consider the source!

I never needed speech, though some sounds I really didn't hear right, ever. "Button", I always heard, "buddin". Perhaps it's the midwest accent, no one ever picked up on that type of problem, till I had a speech roomate in college. She said, "It's 'But ton'. Cool, I could do that.

I still prefer conversations with one or two. It's funny to the kids at school, they know of my hearing problem and they think it's weird that I have less tolerance for noise than the other two hearing teachers. :laugh2: They've learned though, if they keep their voices down, they can get away with alot! Their problem is that I do read lips! ;)

So are you saying that you can't stand loud noises with or without the hearing aids? If so,that is how my daughter is. She actually seems worse about loud noises without them. When she was in preschool,she would freak out when they had a fire drill. We thought it was because she was afraid that there was a fire,even tho we explained to her what the drill was and it was just practice. Since then,she absolutely hates smoke detector noises,any kind of beeping noises-other than the microwave timer,she is used to that.

I don't mean to bug ya Kath,but you might be able to help me understand what she is dealing with a little better.

[Kathianne]

So are you saying that you can't stand loud noises with or without the hearing aids? If so,that is how my daughter is. She actually seems worse about loud noises without them. When she was in preschool,she would freak out when they had a fire drill. We thought it was because she was afraid that there was a fire,even tho we explained to her what the drill was and it was just practice. Since then,she absolutely hates smoke detector noises,any kind of beeping noises-other than the microwave timer,she is used to that.

I don't mean to bug ya Kath,but you might be able to help me understand what she is dealing with a little better.

Krisy, I hear you. You are right to seek out those whose experiences mimic your daughter's, as opposed to your's, a result of noise abuse.

I can tolerate 'loud' better without my hearing aids; my guess, more easily than hearing people. With the hearing aids, lots of noises bother me, to the point that I have to rip off the aids. Fire drills, for certain. Today they are combined with flashing lights, way too much input!

Having come of age in the 70's loud music was the norm. Let's just let the fact that I saw "Tommy" live, and went to sleep during the concert, could not be awakened until it was over. Speak to that. Way too loud and that was after I took out the aids. The WHO broke levels of sound I can't contemplate.

When one is used to a 'quiet world', sudden loud noises cause a shut down or over reaction.

The worst thing about being hearing impaired is that you get garbled input, then when you react to what you think you heard, people react as if you are stupid. One learns to not react, keep it to yourself. Watch for that. There is a tendency to withdraw, especially if smart and sensitive.

I was sort of lucky, in the sense that my mom was a major withdrawer and I thought her wrong. Such a smart person, but for fear that she would be put down, she withdrew. I became pretty aggressive, making someone repeat themselves numerous times, reminding them I couldn't hear, SO fukin' change your volume or cadence! Not nice, but effective. It doesn't sound like your daughter has those kind of experiences?

I'll not lie to you, it's tough. I never felt comfortable when young.

[krisy]

When one is used to a 'quiet world', sudden loud noises cause a shut down or over reaction.

The worst thing about being hearing impaired is that you get garbled input, then when you react to what you think you heard, people react as if you are stupid. One learns to not react, keep it to yourself. Watch for that. There is a tendency to withdraw, especially if smart and sensitive.


I'll not lie to you, it's tough. I never felt comfortable when young.


One of the first things I read in the doctors office was that people loosing hearing tend to withdraw and can eventually get depressed because they feel alone. Because of that we have been especially aware of how she seems to be feeling. So far,she has responded very well to everything. The other night tho,I was talking to her about it and she asked me if she still has to wear her hearing aids when she grows up. I felt bad,because we hadn't explained well enough to her that this was permanent. I told her that she would still need them when she was older,but that her ears just needed some help and that's what the hearing aids were for. Her reponse was..."mom,I don't won't to wear hearing aids on my wedding day!"

Her speech has been an issue for a while and she was actually improving until the last 6 months to a year ago,which is when her hearing was apparently geting worse. She is definitley understandable most of the time,just once in a while it's hard to get what she is saying. She substitutes some letters for others. Like the words German Shepard,she says Sherman Shepard.

You couldn't have explained the whole loud noise thing any better,Kath. What your saying about a quiet world really makes sense. Thank you.

[nevadamedic]

Hi everyone! I haven't been around much for a while,but the kids and I have a snow day!!!! I've been pretty busy. We found out a few months ago that my 7 year old daughter has been loosing her hearing. She has moderate severe loss in the right ear and moderate loss in the left. The hearing loss didn't become apparent until this past fall when she got a cold and she started blasting the t.v. and we had to talk into her ear for her to hear us. We have been to Cincinnati Children's Hospital a gazillion times the last couple of months and found out that her hearing loss is genetic.

She got her loaner hearing aids about a week and a half ago and is doing well with them considering she is 7 and suddenly has hearing aids hanging on the back of her ears and molds inside her ears. She will wear them several hours before asking to take them out for a little bit. She has been wonderful for all the tests and I am so proud of her. The doc says that my husband and I are both carriers of the hearing loss genes which is why she has it. My son did not get them however. He also said that he cannot guarantee that she will not completely loose her hearing,but there is only a 5 percent chance that she will.

It is nice to be here reading all the fiery debate about the upcoming election.

That sucks :(

They can't fix that with surgery? It sounds like she is taking it well, and thats got to be hard on her since seven year old's don't really understand something like this. I bet she is scared :( My daughter had a couple surgeries on her ears and ear problems are not fun, but things will work out in the end and everything happens for a reason.

[krisy]

That sucks :(

They can't fix that with surgery? It sounds like she is taking it well, and thats got to be hard on her since seven year old's don't really understand something like this. I bet she is scared :( My daughter had a couple surgeries on her ears and ear problems are not fun, but things will work out in the end and everything happens for a reason.


I have to talk to the doc more about if her hearing loss can be fixed or not. He didn't suggest that,other than bringing up cochlear implants for children with total hearing loss. Thank you for your concern. It is very sweet.

What did your daughter have surgeries for?

[Kathianne]

One of the first things I read in the doctors office was that people loosing hearing tend to withdraw and can eventually get depressed because they feel alone. Because of that we have been especially aware of how she seems to be feeling. So far,she has responded very well to everything. The other night tho,I was talking to her about it and she asked me if she still has to wear her hearing aids when she grows up. I felt bad,because we hadn't explained well enough to her that this was permanent. I told her that she would still need them when she was older,but that her ears just needed some help and that's what the hearing aids were for. Her reponse was..."mom,I don't won't to wear hearing aids on my wedding day!"

Her speech has been an issue for a while and she was actually improving until the last 6 months to a year ago,which is when her hearing was apparently geting worse. She is definitley understandable most of the time,just once in a while it's hard to get what she is saying. She substitutes some letters for others. Like the words German Shepard,she says Sherman Shepard.

You couldn't have explained the whole loud noise thing any better,Kath. What your saying about a quiet world really makes sense. Thank you.
Krisy, I'm someone with a pretty significant loss from birth, that had to adapt to a hearing world. I was blessed and cursed being from a family with some that had the same problem, though not acknowledged to any degree until I was in high school.

My mom, aunt, uncle, all siblings, had hearing as bad give or take than mine. In my generation, 5 cousins also had the problem, I was the first with hearing aids, over the objection of my pediatrician. Mind you, I'm on the 'cusp' of new and old. My grandfather on my mom's side was from the stories, more deaf than myself. So no doubt, heredity.

The blessings, as you know already enough of the curses. My mom had serious loss, but was aware of. She managed to become, not a joke, the chief operator of Chicago exchange of Bell system during WWII. She could enunciate like no one's business. :laugh2: She taught me to speak.

Look into your daughter's eyes. Make sure she is connecting. Say all words, slowly and distinctly. Nothing matters more than being able to communicate. (don't forget to be clear on buttons, and ridden. LOL!)

[nevadamedic]

I have to talk to the doc more about if her hearing loss can be fixed or not. He didn't suggest that,other than bringing up cochlear implants for children with total hearing loss. Thank you for your concern. It is very sweet.

What did your daughter have surgeries for?

She had tubes put in her ears. She also cant go underwater as she gets pain in her ears if she does.

[krisy]

Krisy, I'm someone with a pretty significant loss from birth, that had to adapt to a hearing world. I was blessed and cursed being from a family with some that had the same problem, though not acknowledged to any degree until I was in high school.

My mom, aunt, uncle, all siblings, had hearing as bad give or take than mine. In my generation, 5 cousins also had the problem, I was the first with hearing aids, over the objection of my pediatrician. Mind you, I'm on the 'cusp' of new and old. My grandfather on my mom's side was from the stories, more deaf than myself. So no doubt, heredity.

The blessings, as you know already enough of the curses. My mom had serious loss, but was aware of. She managed to become, not a joke, the chief operator of Chicago exchange of Bell system during WWII. She could enunciate like no one's business. :laugh2: She taught me to speak.

Look into your daughter's eyes. Make sure she is connecting. Say all words, slowly and distinctly. Nothing matters more than being able to communicate. (don't forget to be clear on buttons, and ridden. LOL!)


The funny thing is,there is no hearing loss in the family. The doc said that he isn't surprised because the gene is a recessive one. She has it because my husband and I both carry it.

She is taking speech at school and we are getting her back down to Children'e Hospital for speech too. Even tho her speech isn't great,she loves to talk,a lot!!!

Her aids are definitely helping in all areas. Even tho the speech improvement will be gradual,she is hearing much better. She is realising now how poor her hearing was. When she takes the aids out,she tells me she can't her anything. I suppose it's a pretty drastic difference.

[krisy]

She had tubes put in her ears. She also cant go underwater as she gets pain in her ears if she does.


Well that stinks. I guess she can't swim? Hopefully she will outgrow it. My brother had tubes and ear problems as a child,but none as an adult.