My 7yo DD was just diagnosed with ANSD (auditory neuropathy spectrum disorder) yesterday. I have so many questions now...
Background first: We adopted DD when she was 4, so most of her background is 3rd hand. DD was born at 27 weeks and has a host of medical and developmental issues related to her birth. She failed her newborn hearing screening. At 3yo she had an ABR that showed moderate hearing loss and she was given hearing aids. Her foster family did not allow her to wear her aids because they were expense and they didn't want her to lose them... Since we've had DD, she has worn her hearing aids everyday, although she frequently takes them out and becomes frustrated with them. DD also does not speak at all, even though her vocal chords do function (they checked those yesterday too).
Yesterday DD had an ABR done and she flatlined it. She also had an MRI that we are waiting for the results on. 2 weeks ago, DD had a hearing test with headphones that still showed moderate hearing loss.
DD obviously has some hearing. She will respond to her name and likes to listen to music toys. But obviously there's some disconnect part of ANSD that makes it hard for her brain to convert the sound she hears to something she can understand.
So, on to my questions.
Does anyone have experience with this diagnosis when there is still some hearing present? What are our options? The audiologist encouraged us to continue using her aids, but sometimes she really doesn't want them, which is understandable with this diagnosis. I've been reading a ton about CI with ANSD and some of it sounds promising. I know nothing about CIs or if they would even be recommended for someone who still has hearing.
The blessing in all of this is that this year DD started school at the school for the deaf. She decided last year that she wanted to sign over using her AAC device, so we made the decision to change schools. And now it makes sense why she prefers signing.
Background first: We adopted DD when she was 4, so most of her background is 3rd hand. DD was born at 27 weeks and has a host of medical and developmental issues related to her birth. She failed her newborn hearing screening. At 3yo she had an ABR that showed moderate hearing loss and she was given hearing aids. Her foster family did not allow her to wear her aids because they were expense and they didn't want her to lose them... Since we've had DD, she has worn her hearing aids everyday, although she frequently takes them out and becomes frustrated with them. DD also does not speak at all, even though her vocal chords do function (they checked those yesterday too).
Yesterday DD had an ABR done and she flatlined it. She also had an MRI that we are waiting for the results on. 2 weeks ago, DD had a hearing test with headphones that still showed moderate hearing loss.
DD obviously has some hearing. She will respond to her name and likes to listen to music toys. But obviously there's some disconnect part of ANSD that makes it hard for her brain to convert the sound she hears to something she can understand.
So, on to my questions.
Does anyone have experience with this diagnosis when there is still some hearing present? What are our options? The audiologist encouraged us to continue using her aids, but sometimes she really doesn't want them, which is understandable with this diagnosis. I've been reading a ton about CI with ANSD and some of it sounds promising. I know nothing about CIs or if they would even be recommended for someone who still has hearing.
The blessing in all of this is that this year DD started school at the school for the deaf. She decided last year that she wanted to sign over using her AAC device, so we made the decision to change schools. And now it makes sense why she prefers signing.
