Anyone with an AN diagnosis?

F

Fresh2Deaf

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Hi. My child has been diagnosed with auditory neuropathy (from a bad case of jaundice). I've tried looking it up online, but I've only found websites explaining factual, scientific info or experiences from parents with AN kids detailing every doctor appt. I want to know what it's like to have AN, as I know that this is a different form of deafness. I know everyone's different, but I just want a better understanding of it from an articulate adult who has lived with this since infancy. I've read around this site and it seems everyone's pretty good at answering posts, so hopefully I get responses.

So, what's it like? What are "hearing moments" really? Did CI work for you? I heard it doesn't work for some AN kids because of the nature of the deafness. Do you know what caused your AN? If it was jaundice, was your case really bad? My child's bili was over 30.

Thanks in advance .....

Edited to add: How important is ASL to you, if at all?

Edited to add: What I meant by articulate is able to understand and express emotions/experiences/thoughts with words. It's not easy for everyone to do, and not everyone takes the time to analyze themselves like that. I didn't mean that it had to be grammatically perfect. I've realized a lot of people on here (including myself) have a lot of errors in writing. I don't want to offend anyone or put anyone off. =)

Edited to add: Sorry for being overly defensive. It just seem like it doesn't take much to set some people on here off. =))))
 
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Hi there,

I don't know of anyone on AD who has AN. (If there is anyone though, I'm sure they'll respond once they read your post.)

I wanted to suggest an excellent e-mail list for parents of children who have AN or adults who have AN. It's on Yahoo! Groups and is called "Auditory Neuropathy." You can find it by doing a Yahoo! search for "auditory neuropathy." I'm sure that list will provide you with a wealth of personal experiences, support and information.

By the way, I was also born prematurely and severely jaundiced. My bili levels were also extremely high -- although I don't remember the number off-hand right now.

Hope this helps! :)
 
Fresh2Deaf - AN/AD.....I can only imagine how daunting sifting through all the information must be for you.

Dr. Charles Berlin is a leading expert on AN/AD in the US. If you decide that you wish to contact Dr. Berlin, I can provide you with his email. Simply pm me if you wish. :)

The AN/AD group that Hear Again mentioned is a wonderful group of people.

Best wishes in you journey.
 
Edited to add: How important is ASL to you, if at all?
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I don't have AN, but as a hoh adult (which is kind of the same since hoh folks have some hearing) I would suggest that you go with a full toolbox approach.
Push speech/language therapy , but also learn ASL. It's a fun language to learn, and it also captilizes on a dhh person's nautral strengh that is visual processing!
 
People tell me I have "Central Auditoral Processing Disorder" and try to treat it like it is an LD or something. But I have a CORTICAL HEARING IMPAIRMENT that affects my life each and every day. In terms of Deaf Culture I am "Hard-of-Hearing." There are conductive problems, sersorineiral problems, and cortical problems. Problems can be mild, moderate, severe, or profound. People can have problems with sounds and speech, sounds only, or speech only. I have many more problems with speech. I have even met audiologists who "didn't get it." They just can't accept the fact that I am from a different culture/language group. That I am "not a broken Hearing person."
 
Here's what I know about AN.

There are 3 different kind of AN, and implants only work when the lesion is in the cochlea itself and that is only 1/3 of the time. The biggest problem is that you can't tell which kind you child has.

AN is extremely varied. Some people with AN don't even have a hearing loss. Several studies show that each person is very different. Some have mild losses, some progressive, and some even end up regaining hearing!

From my research, hearing aids don't work well for a lot of people with AN. CI's are very controversial, since they only help a handful of people with AN. They have only started even implanting AN children relatively recently.

Many experts believe that the only way to get language to a child with AN is through ASL. Their hearing is so unreliable and (generally) unusable because of the "garbling" that understanding through listening is unlikely if not impossible.

See this link for a simulation of hearing with AN:

Simulations
 
From my research, hearing aids don't work well for a lot of people with AN. CI's are very controversial, since they only help a handful of people with AN
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I didn't know that.....It's too bad that they can't tell which AN is directly in the coachla. Would be more effective that way.
 
I'm surprised I don't have AN since I was born prematurely, had high billirubin levels, oxygen/blood transfusions, respiratory distress, jaundice, long term exposure to the incubator and was given many ototoxic drugs while in the neonatal ICU. When my CI audi looked at my neonatal records, she suspected that I might have AN (due to the symptoms I just described), but after being given an ABR, the results were negative. Also, because of my blindness, she suspected Ushers, but since I don't have retinitis pigmentosa (RP), that was immediately ruled out. After taking a background history of my hearing loss, it was discovered that my deafness was caused by prematurity/low birth weight (I only weighed 2 pounds at birth), secondary effects of retinopathy of prematurity (ROP), ototoxic drugs given to me while in the neonatal ICU, infant/childhood ear infections, antibiotics given to me for ear infections and years of untreated allergies.
 
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