Looking for advice/feedback

LeighAnnasMom

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My daughter was originally diagnosed with a mild to moderate bilateral sensorineural loss at 2 weeks old and fitted for aids at 2 months. After several inconsistent booth tests we were sent for another ABR. I stopped using her aids because even the audiologist wasn't confident in the setting because of the frequent changes.

The results show air as moderately severe to severe and bone shows mild to moderately severe. She is now being diagnosed with a mixed loss. The test also showed it fluctuates. She tested the frequencies multiple times with slightly different results. The cause is a mystery because her most recent CT is normal. We discussed possibly repeating the scan. Maybe they missed something.

My daughter is unable to fully articulate to us because of her age and with her hearing so unstable I am concerned about going back to hearing aids for the time being. The gap between the air and bone is about 60 decibels. That seems like a lot and I am concerned about doing damage if her hearing is fluctuating. Although all of the other members of our household is hearing we use ASL. My daughter uses signs and words interchangeably. Is it irrational to take a break from them until she can communicate better?

Just trying to be the best advocate for my baby girl. Any advice/feedback is appreciated :)
 

mev426

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I don't think BAHA would work any better than BTE because she has mixed hearing loss. Generally the bone anchored hearing aids (BAHA) only benefit individuals with purely conductive hearing loss.

How old is your daughter now?

P.S. I have mixed hearing loss too! I wear behind the ear hearing aids, but I wasn't fitted for them until I was diagnosed at the age of five.
 

LeighAnnasMom

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She will be 2 in May. The concerning thing for me is the fluctuations. It was suggested to have her aids set on different modes and switch them based on her behavior. The test showed that at her best her loss is mild and at her worst it's severe. She can't say mommy this is to loud. What if her cranky behavior is because she's teething. I just don't know how helpful the aids she has now are.
 

deafdyke

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I don't think it would be TOO bad to take a break from aids....She's HOH right? I think the panic about "gotta aid" seems to be more for kids who have very little residual hearing and so may need time to develop HOH skills...Remember it wasn't that long ago that HOH kids didn't get aided til we were toddlers...we still developed speech skills.....And you're doing ASL which is even better....She's got speech and can still hear without aids right?
 

hurleysrus

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I don't think BAHA would work any better than BTE because she has mixed hearing loss. Generally the bone anchored hearing aids (BAHA) only benefit individuals with purely conductive hearing loss.

How old is your daughter now?

P.S. I have mixed hearing loss too! I wear behind the ear hearing aids, but I wasn't fitted for them until I was diagnosed at the age of five.

Not true.... i am a bilateral baha wearer with mixed loss and they help me a lot
 

NaidaUP

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Not true.... i am a bilateral baha wearer with mixed loss and they help me a lot

Not true...It all depends how severe your sensorineural (inner ear) loss is tho. I got accessed for a BAHA before but my sensorineural (inner ear) loss is too severe for a BAHA to work so they don't work for everyone with a mixed loss.

BAHA only really work when your sensorineural loss is only mild or moderate at the most.
 

LeighAnnasMom

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I don't think it would be TOO bad to take a break from aids....She's HOH right? I think the panic about "gotta aid" seems to be more for kids who have very little residual hearing and so may need time to develop HOH skills...Remember it wasn't that long ago that HOH kids didn't get aided til we were toddlers...we still developed speech skills.....And you're doing ASL which is even better....She's got speech and can still hear without aids right?

Yes, she can hear without her aids. It was the signing that made me question what they were getting in the booth. She damaged her aids and had to be with out them for about 2 weeks. Everyone, including the speech therapist noticed how aware and present she remained without them. She responded to her name and commands with her back turned. She has more signs than words right now and she would pretty accurately sign words you would say. The most for me was the word fish. She would sign and repeat the word fish!

Just before that happened we had a series of booth tests where her responses were worse. They told me her hearing was getting worse and they kept changing the settings. Every time I would come back I would mention that with every change she would protest wearing them and certain times of the day she would flat out refused to wear them. This was a huge change because she would wear them all day with no complaints and rarely touched them.
 

LeighAnnasMom

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Not true...It all depends how severe your sensorineural (inner ear) loss is tho. I got accessed for a BAHA before but my sensorineural (inner ear) loss is too severe for a BAHA to work so they don't work for everyone with a mixed loss.

BAHA only really work when your sensorineural loss is only mild or moderate at the most.

How severe was your loss for it not to work?
 

NaidaUP

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hurleysrus

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I don't know if I'm asking right but to what degree is your loss? Do you experience fluctuations?

my loss is profound on left but only moderate on the right. and yes it fluctuates some. Alot of people go by the reports that baha only helps ssd or moderate loss, however they are only in the early stages of gathering input from the few bilateral and/or profound users. it helps me alot, however i do still struggle some with location/directional soundd. and "busy" (noisy) places. i still wouldnt give it up :)
 

LeighAnnasMom

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my loss is profound on left but only moderate on the right. and yes it fluctuates some. Alot of people go by the reports that baha only helps ssd or moderate loss, however they are only in the early stages of gathering input from the few bilateral and/or profound users. it helps me alot, however i do still struggle some with location/directional soundd. and "busy" (noisy) places. i still wouldnt give it up :)

Interesting....

How long have you had BAHAs? Did you wear BTEs at all? How does the sound quality compare? All of the online resources lead you to believe that hearing greater than 50 would disqualify you.
 

NaidaUP

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Interesting....

How long have you had BAHAs? Did you wear BTEs at all? How does the sound quality compare? All of the online resources lead you to believe that hearing greater than 50 would disqualify you.

All depends where her bone condiction levels are, if they are above 50db, then it doesn't matter where her air condiction levels are, they can be 100db and it won't matter.

My bone conduction levels are around the 80db to 100db
My air conduction levels are 115db to no response.

If someone tried using a BAHA with a bone conduction level in the profound level, they won't get anything from it, they may as well go for a cochlear implant.
 

hurleysrus

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my BC was at 65, which initially booted me out. But persistance pays off. i tried BTEs before but everything was muffled and too distorted. It really does depend on multiple factors. And i could have went CI but chose this as less invasive. I have had them for 3 yrs. And while i believe they are wonderful i would never assume they are great for eveyone. i did ALOT of research, communicated ALOT with the main two companies, and spoke with many patients. both good and bad. i like to gather as much info as possible before taking the first standard found. research and prepare questions and expectations before any decision.... no one will advocate if they dont have all pertinent details. and unless someone else has my medical chart they cannot say what my loss is. The best advice i can give is do research, armyourself with questions and consult at least more than one doctor
 

LeighAnnasMom

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All depends where her bone condiction levels are, if they are above 50db, then it doesn't matter where her air condiction levels are, they can be 100db and it won't matter.

My bone conduction levels are around the 80db to 100db
My air conduction levels are 115db to no response.

If someone tried using a BAHA with a bone conduction level in the profound level, they won't get anything from it, they may as well go for a cochlear implant.

Her bone test showed 50, 60 and 90 at 500, 1000 and 4000, respectively. I am still new at reading/understanding the audio gram. The audiologist then said it would actually be 30, 40 and 70. You guys are more familiar than I am.
 
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