Hearing and Audiology 101 (NDSC info)

If you're like me and had heard the terms but didn't really get it, I'm starting to get a grasp on all of this. I'm still learning, but it's coming.

I posted recently about my frustration about Kamdyn testing in the mild hearing loss range even after tubes. I spoke with the Audiologist on the phone, and she was addressing all of my concerns and questions.  I'm also going to throw in some of the things that we heard at a session on hearing at the NDSC convention.

Hearing tests 101:

OAE
Kamdyn's audiologist said Kamdyn passed the OAE. From what she explained to me, the OAE only determines severe hearing loss. This is why it is used on newborns. It easily tells if the newborn is deaf. Kamdyn still has one done at every hearing test. It tests the function of the cochlea and auditory nerve (inner ear).

Tympanometry
Then, there's the Tympanometry test. This tests the movement of the ear drum. If you've ever heard your child's ear drums are stiff, it means they did not vibrate for this test. If the ear drums do not move, it indicates fluid in the ears, even if there isn't an ear infection. If the child has tubes, like Kamdyn does, this test determines if the tubes are open and functioning properly.  This is especially helpful for children like Kamdyn who have tiny ears, making it hard for the doctor to see in.

   Picture from: The Hearing Specialist

A line curving up shows movement of the ear drum.  A flat line indicates no movement, indicating fluid or a blocked tube.

Behavioral hearing test:
A behavioral test on a child under the age of 5 or 6 is difficult, because they are not able to respond to the test as well as older children.  Remember those hearing tests with the head phones and raising your hand on the side you heard the sound?  That is a behavioral hearing test.  Since that won't work for a baby or toddler, they use the system that we are all too familiar with, where they emit a sound from either the left or right speaker.  When the child responds to the sound, they follow it by a visually stimulating reward (a bright picture or noisy toy). 

I have noticed that when they have another person in the room with us, Kamdyn is more distracted by that person being in there.  She also loses interest quickly, as any child her age would.  The Audiologist also explained to me that young children often have a hard time responding to the lower tones, because they are simply not as interesting.  Why would they want to turn toward that sound, it's boring.  So this test is difficult and not the best at getting accurate hearing results for each ear.  But, at the same time, it is all we have at this young age, and it has been done enough times that there is a system behind it.

Regardless of the trouble with the test, I am going to take it seriously if my child is not evaluated with normal hearing. The audiologist at the NDSC convention stressed the importance of normal hearing for any child. She stated that a typical child with some degree of hearing loss in one ear will likely have to repeat a grade. As a teacher, that sounds like a pretty significant affect to me. With language and speech barriers already in her way, Kamdyn does not need more things, like hearing loss, stacked against her. There is not a standard of hearing loss for a child with Down syndrome. Many children with Down syndrome will be classified at some point with some degree of hearing loss, but it has been proven that the most effective way to address these issues is aggressive and early treatment, whether it's tubes or hearing aids.


Behavioral test results:

At the NDSC session we attended, the Audiologist said that normal hearing was at 15 decibels.  Kamdyn's audiologist considers 20 decibels in the normal range as well.  Before tubes, Kamdyn was in the 30-60 range, mild to moderate hearing loss.  After tubes, she is in the 25-30 range, moderate hearing loss.

Here is a chart similar to the one that we were given at the NDSC convention:

Chart from Cochlear Implant Online

You can print one off for yourself here:  Listen and Talk

ABR:
ABR stands for Auditory Brain stem Response. It measures the electrical activity in the brain as a result of sounds. MedicineNet.com says, "The audiologist can then present different loudness levels of each sound and determine the softest levels at which the infant can hear." An infant is able to do this test while sleeping, but an older child needs to be sedated, because they have to be still for the test.


The plan for Kamdyn:
As for Kamdyn, the plan for her is to have a hearing test in August with a different audiologist (basically a second opinion) that we set up through our pediatrician.  She has a one hour hearing test set up at her usual audiologist/ENT in a few months.  Depending on the results from these, we will decide where to go next.  If we are still not getting normal hearing results, we will most likely pursue an ABR.

My two cents:
I would recommend that you always ask for the exact numbers from the behavioral hearing test.  Print off your own copy of the chart like I pictured above and take it with you.  Know your child's hearing.  And if it's not normal, find out what you are going to do next. 

And like I said, I'm still learning, so if I got something wrong, or I left out something important, feel free to fill me in.  Thanks.

Kamdyn is getting tubes

Some of you know from Facebook that Kamdyn was scheduled for tubes at her last ENT appointment on April 30.  After that appointment, we went over to Radiology and Kamdyn had a neck x-ray to check for atlanto-axial instability that people with Down syndrome can have in their c-spine.  It's been about 2 weeks since she had that x-ray, and I hadn't heard anything.  I figured no news was good news, but I planned on following up with it eventually.

Today, Kamdyn had a pre-op appointment with the anesthesiology peeps.  They weren't kidding when they said the appointment takes 2 hours.  For real.  I answered a ton of questions.  Medicines.  Dosage, which I never know.  I have to bring her meds along on surgery day.  Family history.  All the usual.  Since we were talking about her last ENT appointment, I asked about the results from her neck x-ray.  I knew when she didn't answer right away, that there was something.  So she tells me that they found a thickened area in the airway.  It's hard to remember now, but I believe her words were that when Kamdyn flexes her neck forward, her airway closes.  I couldn't get many details, because, first of all, I was a little caught off guard, but it also isn't their department, and I needed to talk to the ENT. 

On the way home, I felt so terrible and sick over the whole thing.  The thought of handing Kamdyn over for this procedure, suddenly brought up so many dormant emotions that I had 2 years ago, when we were preparing to hand Kamdyn over for open heart surgery.  Thinking back today, I realized how numb I was during those days 2 years ago.  Looking back now, I can say that I was literally in survival mode.  Thankfully, Kamdyn never did need that open heart surgery, but I was surprised by my reaction today to all of those old emotions. 

Then, I found myself being really upset, because I can't understand why nobody thought to let us know about this new found abnormality in her airway.  The ENT's office eventually called back and the doctor said that she saw the report and noticed the abnormality, but she didn't think it was a problem.  The whole thing still irritates me, because I feel like my trust in that doctor is a little scarred now.  I would rather be told, even if it's not a big deal.  It's still an abnormality.  Plus, I pretty much received two opposite reports, one concerning, the other no biggie.  I will be doing some of my own research and talking with the doctor more about this.

In the meantime, Kamdyn's tubes procedure is still scheduled for May 30.  She failed her hearing test at her April 30 appointment, and I believe that her hearing has been compromised for quite some time now.  I wasn't given any promises that her hearing will return to normal, although they are hopeful.  Of course, I'm a little worried about that, as well.  For the procedure, the anesthesiologist said that they always prefer not to insert an IV or breathing tube, but given Kamdyn's respiratory history and air way abnormality, it is a possibility.  The ENT also said that while Kamdyn is under, she will examine her airway better and find out more about the airway abnormality.

In the grand scheme of things, tubes is seriously no big deal.  We've done it twice with Austin.  This past time, he walked off with the nurse, dragging his blankie behind him, as we waved.  But I have no doubts that handing Kamdyn over will be a whole different story.  Partly from the extra concerns, and partly, because this will be a reminder of Kamdyn's early days, when I felt so uncertain about her health.  But today, I can say that I am thankful for a happy, healthy little girl.

And some pictures from our Mommy/Daughter anesthesiologist appointment day:

Hello bed head in the car:

Hello falling back to sleep 10 minutes before we arrive, after an hour drive:

Hello hospital:



Hello anesthesia office:

You seriously need to finish up that Children's Hospital you're working on, because this room was boring.

Hello Hershey Kiss shaped light posts:

Hello roller coaster that my husband is dying to ride:

Hello Chocolate World Tour:

Hello Mommy and me time:

Hello rows and rows of candy:

Hello coffee:

Hello happy girl eating a Reece's peanut butter chip cookie:



Hello chocolate syrup:

It's really a bank, but I don't think she knew.











"Mmmm, how do I get this thing up to my mouth?"