Looking for advice on my 22 month old's mixed hearing loss

[LeighAnnasMom]

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

 

[Bebonang]

Don't stop, keep signing to your daughter no matter how old she is. If she can do verbally but not clear enough to understand her. Anyway, it is best that she sign so that she can understand what you and your family members who can sign. Without signing, she will get frustrated and not happy if she can not make out. Hearing aid(s) and CI(s) would not help much on picking up words, but can hear environment sounds. Her hearing loss is not the same like yours if she have the devices. It is different. So it is best that you keep signing with her so that she does not get frustrated and angry. Use both of them if you want her to speak unless she could not pronounced the words.

I was like that growing up and I hate oral method plus going to mainstream school where they don't allowed me and other deaf classmates to learn ASL and not have ASL interpreters back then. I was frustrated and angry with the school principal and hearing teachers. I had to relied on books for learning but that does not always help with getting a good grades.

Sign language is very important to Deaf students and it is suppose to be 1st ASL and English 2nd.

Good luck on your baby girl.

 

[Tuscany]

If the doctors are unsure about what level her hearing loss is at then maybe avoid putting hearing aids on her for the time being. Since her hearing fluctuates then the hearing aids may hurt her sometimes from being too loud or set at the wrong frequency.

She is still very young so you can try mixing sign language and talking orally. The tables could turn either way so it's best to teach her both.

And don't worry about school because of what Bebonang says, times have changed a hell of a lot since back in her day.

At the end of the day, it's up to you to decide whats best for your daughter. Keep consulting your doctors over what to do.

Good luck!

 

[LeighAnnasMom]

Don't stop, keep signing to your daughter no matter how old she is. If she can do verbally but not clear enough to understand her. Anyway, it is best that she sign so that she can understand what you and your family members who can sign. Without signing, she will get frustrated and not happy if she can not make out. Hearing aid(s) and CI(s) would not help much on picking up words, but can hear environment sounds. Her hearing loss is not the same like yours if she have the devices. It is different. So it is best that you keep signing with her so that she does not get frustrated and angry. Use both of them if you want her to speak unless she could not pronounced the words.

I was like that growing up and I hate oral method plus going to mainstream school where they don't allowed me and other deaf classmates to learn ASL and not have ASL interpreters back then. I was frustrated and angry with the school principal and hearing teachers. I had to relied on books for learning but that does not always help with getting a good grades.

Sign language is very important to Deaf students and it is suppose to be 1st ASL and English 2nd.

Good luck on your baby girl.

Thanks for your feedback. We do sign to her and have been since she was 6 months. All of the doctors said she didn't need because she would be oral. It was very important to us even though we are hearing, that she learned in case her hearing got worse. I think it's more important that she communicates than she speaks. I was just pointing out that she chooses to do both and it's perfectly fine for me.

 

[LeighAnnasMom]

If the doctors are unsure about what level her hearing loss is at then maybe avoid putting hearing aids on her for the time being. Since her hearing fluctuates then the hearing aids may hurt her sometimes from being too loud or set at the wrong frequency.

She is still very young so you can try mixing sign language and talking orally. The tables could turn either way so it's best to teach her both.

And don't worry about school because of what Bebonang says, times have changed a hell of a lot since back in her day.

At the end of the day, it's up to you to decide whats best for your daughter. Keep consulting your doctors over what to do.

Good luck!

That was exactly what my thinking. Her doctors lean more towards the oral approach and have not been very supportive of my desire for her to learn sign. I have learned that their advice can be biased so I am never presented with all choices just the choices they favor. They have been pushing hearing aids from birth which I went along with not knowing they never gave her a bone test to rule out a conductive loss. So she was never properly diagnosed. Now I question everything and try to use common sense.

 

[Tuscany]

That was exactly what my thinking. Her doctors lean more towards the oral approach and have not been very supportive of my desire for her to learn sign. I have learned that their advice can be biased so I am never presented with all choices just the choices they favor. They have been pushing hearing aids from birth which I went along with not knowing they never gave her a bone test to rule out a conductive loss. So she was never properly diagnosed. Now I question everything and try to use common sense.

Don't distrust the doctors, they just want to help.

Despite what some deaf people here say, there's no conspiracy to destroy deaf culture.

The best age to try hearing aids for her is around 2-3 years old, I think.

 

[LeighAnnasMom]

Don't distrust the doctors, they just want to help.

Despite what some deaf people here say, there's no conspiracy to destroy deaf culture.

The best age to try hearing aids for her is around 2-3 years old, I think.

I am not informed enough to comment about the deaf culture conspiracy.

What I do know is that my daughter was improperly diagnosed. A bone conduction test would have identified a conductive loss but it was never done until now. So for nearly 2 years my daughter has been wearing aids that were not set correctly. Every appointment for the last year they said her hearing was getting worse and were turning them up. The bone/air gap is 60db. That is a lot! I don't want to think of the days that I forced her to wear them because the doctor told me that her discomfort was normal. It's not that I distrust them. I have learned to become more informed and to solicit advise from others with similar experiences like the posters here. And lastly to trust my gut.

I hope you understand my frustration.