Friday, February 20, 2009

Technical Mumbo Jumbo

On Wednesday, John and I headed down to the Children's Hospital in a nearby City to visit one of our favorite Audiologists. It had been a couple of months since he'd been in the booth, and since he has this tricky thing called Auditory Neuropathy , we have to do frequent hearing rechecks to see where he's at.

I've never really explained Auditory Neuropathy here, because, well, truthfully, it's a very confusing disorder that not many people understand. But I've received emails from a few other mom's of AN kids who have tracked me down from the approximately 10 words I have said about Auditory Neuropathy with questions, and I figure...you guys are smart. Let's talk about it.

Seth was only recently officially diagnosed with AN. I'm not going to go into all the scientific explanations of what it is, because we'd be here all night, and truthfully, it's a relatively new diagnosis and there are only a few experts on it in the first place. But here is the absolute best layman's explanation of Auditory Neuropathy/Dys-synchrony. It's from a book called Choices in Deafness . If you have a child with hearing loss, it is a must have book. MUST HAVE, I tell you. It is an amazing introduction into both different types of hearing loss and several different educational options.

In the first paragraph of their chapter on AN, they describe the disorder this way:

Have you ever tried to tune into a distant radio station, but you just can't pick up the signal properly? You know it's there- in between the static, you might make out the occasional word or phrase. But with the sound going in and out, you can't tell what the DJ  is talking about. Turning up the volume on your radio makes the sound louder, but no less distorted. Playing with the bass and treble controls doesn't help either. If a clear signal isn't reaching your radio, you're to hear mostly noise, rather than speech.

That's essentially the same problem a child with Auditory Neuropathy faces- his ear picks up the sound waves, but the signals are distorted before they reach his brain.

What does that mean for Seth? Well, it means that he has "good" hearing days and "bad" hearing days. There are days when he functions just like a profoundly deaf kid and never responds to anything at all. There are days when he whips his head around to sounds he should not be able to hear at all. The part of AN that is really rough, though, is this. Even when he is having a good hearing day, the sounds he is hearing don't sound like words or language, they sound like static or white noise.

Because Seth does not have a "traditional" form of hearing loss (only about 1% of babies born have some form of hearing loss, and of those, 10% have AN. That doesn't leave a lot of kids to compare to ), we have to keep very close tabs on his language and his residual hearing.

So Wednesday, we headed back to re-evaluate his hearing and check out how his hearing aids are working for him. Two months ago, his aids were giving him almost no benefit. This time around, he was more cooperative and his audiogram showed that with his hearing aids in, he was responding to sounds in the severe hearing loss range. While I was pretty impressed by that, it is very hard for a prelingually deaf baby to learn to speak when they can only hear sounds louder than 60dB.

I'll be honest here. Seth is pretty responsive at home, one on one. I was thinking I might see an improvement in his booth test without his aids in. But he's still testing as a profoundly deaf baby. He was responding to sounds in the 90-120 dB range, and profound hearing loss is classified as anything louder than 90dB. So we're still on track. His aids are helping, but not enough. The only way to replace the "bad" signal Seth is getting is to create a "good" signal with a cochlear implant.

We've been on an implant track for a long time, but the AN diagnosis threw us for a loop, and it's taken a while to readjust our expectations. Now we have a deaf baby who can hear us, sometimes. It's a very surreal experience, I have to tell you. There have been many times I've been on my knees, praying to God, and I've said "Please, can we go back to when he was 'just' deaf?" Fact is, there is nothing that can freak you out more than when your baby who is supposed to hear nothing turns his head when you speak. I was a mess on Wednesday morning, afraid that the results would be mixed or ambiguous, that we would need to spend months waiting for more testing to be positive he needed the implants. There is no doubt in my mind that Seth offering us such a clear, profound audiogram is a God thing. Sometimes, when we most need clarity, he gives it to us, and I am so thankful for that! He works in mysterious ways sometimes, but every once in a while he offers us big flashing signs, and for me this was one of them.

So John and I and the rest of Seth's team were satisfied that between his audiogram and the hearing aid trial he is completing, CI's are still the way to go, and we are submitting for insurance approval.

Now that's a whole 'nother bag of worms!

58 comments:

Erica said...

Thank you for your explanations, I like reading that type of stuff! I'm praying that your insurance approval is easy for you and works out perfect! I'm just wondering if you do any sign language with him or if they tell you not to? My MIL and her husband are deaf, she lost her hearing in her 30's and he was born deaf. She has contemplated having a CI, but I believe her insurance will not cover it. I'll stop rambling now. Have a great weekend!

Following Him said...

As a family member with a deaf cousin, I am totally blown away by this post. Seth is profoundly adorable, sweet, and just a miracle. Hoping for good news from the insurance company. Hang in there and love and prayers!
~Elyse~

Firefly Photo Jewelry said...

WOW! No wonder you can get overwhelmed at times and this is just one small part of his deafness. I'm praying the insurance comes thru and God will provide hearing for him one way or another. I imagine it is a bit of a shock to watch your deaf son turn his head to a noise.
I hope you get some answers at the appointment!

Kristy Tootle said...

I just purchased a bracelet....
I am praying for you all...my son's name is Seth too:)

Donna said...

I just came across your blog today, from BlogFrog on mine...I linked to yours on my blog so I can follow your adorable family. I used to work with deaf/hard of hearing children and worked with a toddler years ago in grad school who received a cochlear implant. I've never heard of AN, it's very interesting and I can certainly see how it can make dealing with deafness even more challenging. Thank you for sharing your story and I look forward to reading more!
Donna
www.handsful.com

Anonymous said...

Hi El,

I came to your blog through My Charming Kids, and wow, it takes me back. My son Dylan is 13 years old and profoundly deaf. He was diagnosed at 8 months, because he was born before universal screening came about. I can truly identify with your emotions! We lived in California at the time, and Choices in Deafness was one of the first books we read as well. The author, Sue Schwartz, and I are now acquaintances! At the time, she was working for Montgomery County, Maryland's Deaf and HOH program, and we moved to Maryland when Dylan was 3 1/2 so that he could attend their cued speech program. We have used cued speech with Dylan since he was 16 months old, and I can't tell you what that has done for his language and speech. He did fairly well with hearing aids until he turned 11, and then we started noticing things getting harder for him. In 2007 we made the decision to go for the implant, and we haven't looked back. He is AMAZING with the implant, and because English language with cued speech has always been his language (and he could "see" where the sounds of speech should go) he just naturally started inserting sounds he could now hear into his speech. He is completely intellegible to others and is able to understand all people in a conversation. He can talk on the phone with familiar people and we converse sometimes from different rooms. He has done so well that we are beginning the evaluation for a second implant. If I could give you one piece of advice (that you didn't ask for :))I would tell you to look into cued speech. I was a doubter at first, but after attending a cued speech camp when Dylan was a toddler and meeting older kids and young adults, I knew that's what I wanted for Dylan. The system can be learned in a weekend and proficiency takes a few months, but you can cue ANYTHING to Seth that you can say! Even Dr. Suess and nonsense sounds. If you have any questions or just want to talk, please feel free to email me at q2mydylan7@nc.rr.com. BTW, Seth is completely adorable and will teach you so much about life! We can look back now and feel truly blessed by God with Dylan and all the experiences we have had and the people that he has brought in to our lives. And he's a great kid!

Sherri

Anonymous said...

Hi it's Sherri again...I just updated my son's caring bridge site after too long! If you're interested you can visit it at http://www.caringbridge.org/visit/dylankowertz

Sherri :)

Rachel said...

You've heard from moms of children with this diagnosis? What about from someone who has exactly what you've described?

I don't know if this makes you feel any better... but as the parent of a miracle baby, and having had to go through some intense medical things myself as a kid... it is much tougher to be the parent than the kid.

When they put my son under anesthesia for the first time, I wanted so badly to trade places with him.

So I can empathize with how difficult it is to be the parent and not know the answers.

If it is any comfort to you; I know it is easier and somehow more define-able to say "just deaf", but as a person who is profoundly deaf but gets nearly 100% benefit from hearing aids, the moments of clarity and breakthrough of occasional understandable sound are worth it.

So, as confusing as the diagnosis or prognosis may be - please believe that it is a gift to someone who has it.
(By the way - those "moments" allowed me to dance with a professional ballet company for several years into my 20's... it can open up doors even through the confusion).

Praying for you, for clarity and wisdom in each decision as you love your children.

Aunt of 14 said...

Hello!

I just wanted to say... since Seth is so little, he has LOTS of time to learn speech and grammar skills. I became deaf at 3 yrs old, and I had speech therapy in school as well as private lessons every week for years, and my speech is not the CLEAREST, but good enough that I can work in a hearing environment without an interpreter. I've never heard of AN, but it definitely makes sense. I know that the younger the child is who gets an implant, the better it works for them.

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