Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Saturday, January 22, 2011

Hearing or not

So we've been confused about Axel's hearing tests.

It is no secret that I am every medical specialist's worst nightmare. Why? Because I usually have my kid or myself diagnosed long before we ever walk into their office. I feel sorry for them. Really, I do. I wouldn't want to have to deal with my endless questions.

My current diagnosis for Axel is Auditory Neuropathy. When I asked the first audiologist, who tested Axel with a severe hearing loss, about auditory neuropathy, she said "Absolutely not."

I asked the second audiologist about it. She tested Axel at normal limits. She said, "His OAE tests normal, and that rules out Auditory Neuropathy". Ok, good.

But he still acts like a kid who is deaf...sometimes.... and he still can...sometimes...immitate vowel sounds, and sometimes not. Sometimes he acts a child who is deaf (remember, I've worked with kids who are deaf/hard of hearing for  years!) and other times it's CLEAR he's hearing.

Thursday he had a THIRD hearing test done. Again, he tested within normal limits. The audiologist, who I've known for years and really like, gave me a hard time when I told her he's scheduled for an ABR (under sedation) in a couple of weeks when "it's clearly not necessary. He's hearing." (he's having it done at the same time as his MRI)

Here's the thing: People with auditory neuropathy HEAR sound. They will often pass, or have very near normal hearing on a peripheral hearing test. (like a booth test, or with headphones). The sound gets TO the auditory nerve, and they hear it. But hearing, and hearing CLEAR SPEECH are very different things. With auditory neurapathy, the VIII cranial nerve misfires, and the sound doesn't get from the nerve to the hearing center of the brain.

Well, here's a description of Auditory Neuropathy:

"The most striking finding with auditory neuropathy is that Otoacoustic Emissions (OAEs) are normal. This means that hair cells in the inner ear are working normally."

Here's a video that simulates the different levels of Auditory Neuropathy. If this is what Axel has, based on the sounds he is able to make, and the incosistancy with how he responds to sounds, Dean and I would guess him to be in the moderate range, or the 3rd and 4th examples in the video below.

So there ya have it. My diagnosis. Here's where we're at right now. Call us awful parents, but we're praying that his ABR comes back abnormal! Why? Because than there is a REASON for why his speech...even in Serbian...never developed. It would also qualify him for services in the school that I want him in. If he has a normal ABR, we continue to have a mystery on our hands that is going to be even more difficult to service without concrete information.

We can DO something to help Axel if he has auditory neuropathy. Other than signing, there's not much we can do to help him if he just doesn't understand speech.

Confusing, I know. Welcome to our world.


Kathie Brinkman said...

Go with your gut Leah, you know this kiddo!! your diagnosis sounds right to me.

Scarehaircare said...

What about Audio Processing Disorder (APD). There are a lot of ramifications to go with that. In his case, he might need an FM system to block out unecessary noise that your or I can automatically ignore. There might be other things coupled with this. He might hear just fine, but cannot process, especially when coupled with multiple directions or when he is inundated with sounds.
He might need aural rehab in order to be taught to listen. I'm just not sure how you would accomplish aural rehab with a kiddo who has Down syndrome and ESL.