Any ideas? ENTs suck.

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mamarazzijj

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My DD (9mos) was born deaf. We later discovered she had cytomegalovirus (CMV) either in utero or immediately after birth and that was likely the cause of her hearing loss.

Her ABR indicates a profound unilateral loss, but we had noticed she didn't respond to sound at all (no startling as an infant, no detection or localization as she got older, limited babbling). She had a behavioral test at 6.5 months and another at 7.5 months. Both times (at two different locations with two different audiologists), she had NO response to any of the tones at any frequency -- not even a widening of the eyes, a look up, a cry, NOTHING (and definitely no turning toward the sound). The audiologists said, based on those results, she had a bilateral loss.

At the very least, she has a profound unilateral loss. More likely (according to her audiologist, my husband, me, her pediatrician and her deaf educator) she has hearing loss of some sort in the other ear as well. Auditory Neuropathy has been mentioned repeatedly (due to the fluctuations in the loss, the delay in response if there is one), but the normal ABR results apparently rule that out. She's seen three ENTs and each of them have focused entirely on the ABR results and said since she has "one good ear" she'll be "fine." None of them have wanted to do any sort of amplification for her. The only option they've offered is treating her as hearing since she only "needs" one ear. But, in our guts (and based on the behavioral tests), we know it's more than unilateral loss.

Any ideas on what could be going on with our daughter? Any suggestions on how to get the ENTs to consider test results other than the ABRs?
 
mamarazzijj said:
My DD (9mos) was born deaf. We later discovered she had cytomegalovirus (CMV) either in utero or immediately after birth and that was likely the cause of her hearing loss.

Her ABR indicates a profound unilateral loss, but we had noticed she didn't respond to sound at all (no startling as an infant, no detection or localization as she got older, limited babbling). She had a behavioral test at 6.5 months and another at 7.5 months. Both times (at two different locations with two different audiologists), she had NO response to any of the tones at any frequency -- not even a widening of the eyes, a look up, a cry, NOTHING (and definitely no turning toward the sound). The audiologists said, based on those results, she had a bilateral loss.

At the very least, she has a profound unilateral loss. More likely (according to her audiologist, my husband, me, her pediatrician and her deaf educator) she has hearing loss of some sort in the other ear as well. Auditory Neuropathy has been mentioned repeatedly (due to the fluctuations in the loss, the delay in response if there is one), but the normal ABR results apparently rule that out. She's seen three ENTs and each of them have focused entirely on the ABR results and said since she has "one good ear" she'll be "fine." None of them have wanted to do any sort of amplification for her. The only option they've offered is treating her as hearing since she only "needs" one ear. But, in our guts (and based on the behavioral tests), we know it's more than unilateral loss.

Any ideas on what could be going on with our daughter? Any suggestions on how to get the ENTs to consider test results other than the ABRs?
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ABRs offer limited information, especially at your DD's age. My son also is profound on one side, severe on the other as the result of CMV. CMV losses can be progressive, so just because she is showing a lesser loss in one ear does not mean that she will not progress to a greater loss, usually as a toddler.

Find an audi that will offer amplification. CMV deafness usually responds well to HAs. She is not old enough to do defintive testing regarding what she actually hears and responds to, and can make sense of. She will need to be a bit older for that. But there is no reason to delay amplification.
 
I was probaly born deaf 2 and never knew what caused my hearing loss until I found out that my grandmother (my mom's dad's wife) has it and we wore the same hearing aid brand. guess I got my grandmother into the brand I prefer LOL!
 
mamarazzijj said:
She's on par, if not ahead, in all areas other than language development/response to sound. Thankfully, the CMV seems to have only affected her hearing.

We're meeting with a new ENT on Friday. We'll be pushing hard for some sort of amplification.
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YAY!!!!!!! That's awesome!!!!! And hopefully she will respond well to ampflication! Is she also getting ASL intervention and Deaf Ed intervention too? Don't panic too much about spoken language delays. It's still common for even HOH kids to have spoken language delays. But best advice.......try to pursue a full toolbox.
 
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