Luke’s Story – Update

I apologize in advance for the length of this post.  It’s going to be a bit long, because – well – quite a bit has happened with my little man since January.  Before I dive into it, let me backtrack a bit.  Luke was diagnosed with a mild-to-moderate sensorineural hearing loss in December of 2012.  Sensorineural hearing loss is diagnosed when an individual’s air conduction test matches their bone conduction.  Let me explain – an air conduction test is a typical hearing test where the individual wears headphones or ear inserts.  Sounds (called pure tones) are played into each ear at specific frequencies as the decibel (or loudness) is increased.  The individual indicates when they hear the tone.  When the audiologist gets three readings at the same decibel for each frequency in that ear, that is the level that the person is considered able to hear for that frequency.  The test continues until all frequencies in both ears are charted.  A bone conduction hearing test follows the same pattern, except the pure tones are played through a baha device that is touching the skull.  The baha vibrates the skull and transmits the sound directly to the nerve networks in the brain, bypassing the inner ear.  If an individual’s air conduction shows a loss, but the bone conduction is normal they are diagnosed with a conductive hearing loss.  Conductive hearing losses are caused by mechanical issues with the inner ear: fluid, small ear canals, etc. Generally a conductive hearing loss can be corrected.  Now, if an individual has a loss with an air conduction test that is matched by their bone conduction test they have a sensorineural loss – something inside their head (past the inner ear) is causing the loss.  It is considered a permanent hearing loss.

Luke has always tested as having a sensorineural hearing loss and his levels of loss were always very consistent.  Which leads into me addressing behavioral hearing tests.  Air and bone conduction tests are behavioral hearing tests.  Behavioral hearing tests count on the individual being tested to react or indicate when they hear the sounds.  It sounds crazy, but they are considered the gold standard for testing.  Even though you are relying on the individual to give you cues as to when they hear the tones, they are incredibly accurate (even for small children).  Luke has always been a stellar tester.  He’s always extremely consistent and patient while in the booth.  He does play-based hearing tests where he will hold a ring or peg to his cheek.  When he hears the sound, he sticks the peg in the board or drops the ball in the bucket or places the ring on the peg.  His audiologist has tested him by having him wait with the toy on his cheek for over a minute.  Luke just sits there waiting until he hears the tone.  I’ve witnessed this during tests.

From December 2012 to January 2014, Luke was tested at least once a month.  His results were always the same and his levels were always extremely consistent from test to test.  There was no doubt that he had a sensorineural hearing loss.  He wore hearing aids with great success and we worked incredibly hard on his speech.  At the end of January 2014, Luke had a hearing test and to his audiologist’s surprise, all of his levels shifted into the normal zone.  His bone conduction also shifted into normal.  She tested him a week later and the results were the same.  She also tested his acoustic reflexes (a test that plays a loud noise in the ear and looks for the inner ear’s reflex – a person with normal hearing has acoustic reflexes whereas a person with a hearing loss can be missing some or all of their reflexes).  His acoustic reflexes, which were non-present in several frequencies before, were now all present.  On February 7, 2014 she sat me down and explained that Luke’s hearing was testing as normal and that we were going to see how he did without his hearing aids.  To say that I was shocked would be an understatement.  She explained that she has seen one other child who’s sensorineural hearing loss fluctuated to normal and that his loss eventually returned.  She was pretty blown away by what was happening to Luke and couldn’t explain why it was happening.

We removed Luke’s hearing aids and observed.  He seemed to hear everything but had some frustrations and temper tantrums (which could be because he’s two).  His teachers noticed that he wasn’t playing in the group but instead sticking by himself.  Again, something that could be explained by his age.  We made an appointment with his ENT and a second opinion hearing test at Mercy Hospital.  A full hearing test was conducted at the hospital with the same normal results.  The audiologists were baffled.  They explained how rare it is to have a sensorineural loss that just goes away.  Luke’s ENT had the same reaction.  He explained that you don’t have a sensorineural hearing loss that just corrects itself.  He can’t explain why it’s happening, but he explained that the only thing that can be done was for Luke to be closely monitored with very routine tests.  He is pretty confident that the loss will eventually return, and he wants to make sure we catch it early when it does.  He suggested we do a sedated ABR (a test that measure’s the brain’s response to sounds) to rule out something called auditory neuropathy.  Auditory neuropathy is a condition where the individuals degree of hearing loss fluctuates rapidly and effects the individual’s ability to understand speech.  We had that test done and once again the results were normal.  The audiologist that conducted his ABR told me that if his loss never returns that Luke needs to be written about in medical journals.

At some point during all of this, we realized that when Alex was diagnosed with his hearing loss he could speak really well.  He was 4 when his loss was found (he didn’t have any tests before that) and his doctors were surprised at how well he could talk with the amount of loss that he had.  Alex has a high frequency loss – he hears low frequencies normally but as the frequency increases his degree of loss increases (also known as a ski slope loss because his audiogram looks like a skiing hill).  His loss hasn’t changed since he was 4 and he’s worn hearing aids since being diagnosed.  We were always confused because we assumed that Luke inherited his hearing loss from Alex, but their types of losses didn’t match.  We are now wondering if Alex went through a fluctuation period like this during the first four years of his life.  Maybe he had a mild loss or no loss until it fluctuated to where it sits now?  It would explain how he learned to speak so well.  It’s a theory that we have, but will never know if it’s accurate.  The only thing we can do is wait it out and see what happens with Luke.

Luke is still testing as hearing normally without the use of hearing aids.  He is tested once a month.  Last month, he had one frequency in one ear that started moving back toward the mild loss range.  He also lost his acoustic reflexes for his high frequencies in both ears.  We thought, it’s happening – his loss is returning.  This month, all his frequencies were back to normal and all his reflexes were present.  Crazy, I know.  Lord only knows what will happen next month.  Luke continued attending classes at Moog three times a week until the school year ended last week.  He is going to attend once a week during the summer session.  If his hearing is still normal in August, he will stop going to classes at Moog and only go for his hearing tests.  That’s the plan for now, at least.

When we explain to people what’s going on with Luke, their reaction is to think that he’s been healed or that his loss is gone.  While I would love nothing more in this world, it’s simply not true at this point.  Luke has a fluctuating sensorineural hearing loss that happens to be fluctuating into the normal range.  While it’s rare for a loss to fluctuate into normal, it can happen and his happening to Luke.  What all the medical professionals are telling us is that his loss will most likely return, so we are trying to prepare for that.  Mentally, it’s really tough because I am thrilled that’s he’s hearing normally right now and that we have some time to pack him full of as many words as possible, but I can’t be too excited about it.  I keep trying to remind myself that it’s probably not going to stay like this.  I don’t want to get my hopes up.  In the same token, I keep waiting for the other shoe to drop.  It kills me to not know what to expect or when to expect it.  I’m so paranoid, that it makes me crazy.  Still, it’s not a bad problem to have.  For now, we wait.

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3 thoughts on “Luke’s Story – Update

  1. Just have to keep on keeping on! I say that we’re witnessing a miracle and we’ll enjoy it for as long as it lasts, which I hope is forever, but, if not, that will be fine too.

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