Fluctuating hearing loss

[Storygirl]

Have any of you had experience with fluctuating hearing loss? DS10's measurements on the three audiology screenings he has had so far have varied a lot.

 

The first screening, they found a mild sensorineural hearing loss. Both ears registered as just below the benchmark for normal hearing. He then got a trial pair of hearing aids, which he has been wearing since January.

 

The second screening, he actually did better, even when not wearing his hearing aids. At some frequencies, he was below normal, but at others, he was just above, for both ears.

 

Today, his hearing in both ears tested just above the line, in the normal zone. If he had tested this way on the first day, he would have been considered within normal limits (though on the low end). The audiologist mentioned that if they had had that test on the first day, she would not have recommended hearing aids.

 

She said that fluctuating hearing loss was something they didn't see often, and that the ENT would probably be very interested when we go to our appointment in two weeks, because he will find it an interesting case. The audiologist is eager to know what the ENT says.

 

Has anyone else experienced this? I've been looking online. Meniere's disease can cause fluctuating hearing loss but is an unusual diagnosis for children. DS10 has had one (or maybe two) spells of vertigo since last fall.

[mom2bee]

I didn't have hearing tests when I was a girl, but I did have fluctuating hearing loss which was noted anecdotally throughout my childhood by my random spurts of not responding or mishearing stuff. My mom used to say she thought something was wrong with me.

 

I had a hearing test in my late teens and showed slightly lower hearing than average and was diagnosed with Menieres disease as a young adult.

 

ETA: I did have mild balance issues as a kid. I remember around puberty, I started struggling to go through doorways without crashing into the door jamb. I would "set up" my walk through and still hit the door jambs.

I crashed into stuff a lot for about 7 years, between like 11 and 18. It wasn't that I couldn't see it, but I couldn't quite keep my balance around things. I started having more issues with dizziness and vertigo and fewer issues with balance.

Edited February 24, 2016 by mom2bee

[Storygirl]

Thanks for sharing, mom2bee. It's interesting that you had symptoms as a child. I wonder how many people who are diagnosed with Meniere's as an adult actually had symptoms when younger but it took time to put things together. In other words, whether the reason people are diagnosed as an adult is because the symptoms appear then, or whether the symptoms are not understood in children.

 

His dizzy spells make me wonder. One day I had to go fetch him from school, because he was so dizzy he had to lay down on a cot in the office. No reason for that spell of vertigo -- no sickness, no injury. He was okay by the time he got home, but he was on the cot for awhile before I got there, so he was feeling badly for over an hour.

 

On another day I received a call from the school that he was dizzy. I said I would go get him, but within the ten minutes that it took me to leave the house, the school called back to say that he was feeling better and going back to class.

 

It may be totally unconnected to his fluctuating hearing, but I'll be sure to mention the dizzy spells to the ENT. I'm not sure I have mentioned them to the audiologist. I had kind of forgotten about it.

 

[Arcadia]

Has ear wax and also fluid imbalance been checked? My kids and hubby can't hear if their ears are clogged and they don't realise it. The nurses that do the well baby check never ask either even though I tend to check my kids for ear wax before every well baby visit.

 

I forgot how fluid inbalance was checked. I had dizzy spells coupled with asthma, anemia and low blood pressure as a kid but I remembered the doctor checking for fluid imbalance.

[Storygirl]

He does get a lot of ear wax. When younger, there was more than one occasion when he had an ear infection, but he didn't know it. So it is entirely possible that he may have had multiple ear infections that affected his hearing without anyone being aware of it. I mentioned both of these things to the audiologist, but they didn't think they were factors. We'll mention them to the ENT anyway.

 

Strangely enough, the audiologist mentioned that he had some ear wax today, on the day that he scored the highest, but didn't note any on his other visits, when he scored lower.

 

I don't know about fluid imbalance, but it's something for me to look into. Thanks!

 

 

Edited February 24, 2016 by Storygirl

[Crimson Wife]

Auditory neuropathy can cause fluctuating hearing loss. That is where there is an issue with either the connections between the cochlea and the auditory nerve or with the nerve itself. The audiologist should perform what is called an Auditory Brainstem Response test where electrodes are placed on the child's scalp to measure the electrical response to auditory stimuli.

 

Has he had a MRI scan yet? If not, the ENT should make a referral either directly or to a neurologist. But definitely your child should get one to make sure there aren't any anatomical or neurological reasons for a fluctuating loss.

[PeterPan]

Sometimes ear wax buildup can be caused by low omega 3.  You could add some omega 3 to his diet (flax oil, whatever) and decrease beef and see if that affects it.  My dh used to have year build-up of ear wax that gave him problems, and it stopped when we changed our diets.  

 

The rest, I can't help you with.  :(

[Storygirl]

Thanks! We have fish oil, but I haven't used it with DS10 yet. It's something that is easy to try.

 

Our first ENT appointment is in two weeks. We had an earlier appointment set up, but they called us back and said that we should see a certain specialist, which meant waiting a little longer. I don't know what tests he usually runs, but the audiologist says this ENT tends to be more aggressive in his approach, meaning that he will err on the side of ordering extra testing, etc. She said that can be a good thing or a bad thing, depending on your perspective and circumstances. I think it may be a good thing, because I always want to know everything possible.

 

We adopted DS10 from another country at nine months old, so we have limited information about prenatal care or any infant health issues. I have learned that there are some congenital conditions that can lead to later hearing loss but don't show up on newborn screenings. Actually, we have no way of knowing if they would have done a newborn hearing screening on him anyway. We do have a couple of medical reports from the time before he joined our family, and we will take them with us when we see the ENT. Just have to find them first -- we have moved three times since then, and that paperwork is in a box stashed somewhere. He also had an audiology exam around age 18 months as part of early intervention. I don't know if we have a copy of that, but I could probably get it. I think it was a very cursory exam, so I don't know how much it would tell us, but it might be good to have. He did not register a hearing loss at that age, unless it was so minor that they did not mention it.

 

I did see something about auditory neuropathy when I was searching the internet. Thanks for the name of the test they should run! I'll ask the ENT and audiologist about it.

[Paige]

Have they ruled out an invalid test? Maybe their measures aren't completely reliable. If I had tests that varied significantly, I would want them repeated until we had a some sort of consensus. FWIW, DS tested fine at 5. At 6, he failed and they decided to monitor him. At 6.5 he failed again- same results. They still wanted to retest before doing hearing aids because they thought maybe it had to do with allergy season/ear infections/fluid, etc. At 7, he miraculously passed and was released from the ENT. 

 

Years passed....DS started doing poorly in school, showing weird social behavior, strange grammar, etc. Went for Psych Eval...it was hearing loss, untreated for 4-5yrs that caused his issues. And, bonus, all those years of trying to figure things out and fake it had led to anxiety! The (new) ENT said it was highly unlikely his hearing had ever improved and he would have benefited from aids at 6. Also, DS never had a history of ear infections, so although they blamed his poor hearing at 6 on undiagnosed infections, it wasn't appropriate based on his medical history. It may be different if your child did have frequent infections of fluid. 

[Storygirl]

I didn't ask whether the first test might have been incorrect. We are going to a university audiology clinic, so there are graduate students working with him, but they are closely supervised by the audiologist. One the one hand, a less experienced technician might be more likely to make a mistake. On the other hand, there are two to three people overseeing each screening, so there is a kind of built-in safeguard that way.

 

I tend to believe that the low scores are possible. I have often wondered about hearing and/or auditory processing with him. Over the years, I've seen a pattern of him missing information given orally, failing to register when people are talking to him, tuning out when I talk too long, seeming to listen to something I say directly to his face but then responding, "What?" His teacher says she notices him looking around the room to see what the other kids are doing after she has given directions, and he has told her that he doesn't always catch everything she says, especially when she talks fast.

 

I still think there might be a processing piece to this puzzle. But the hearing loss seems to make sense. And he says the hearing aids made a big, noticeable difference for him.

 

So I kind of doubt a false test. Then again, I know nothing about all of this! I would guess the ENT might have some thoughts about whether the testing was accurate or not. The audiologist said not to be surprised if he wants to repeat the same tests over again in his office.

[Storygirl]

Also, I can see that DS10 is having anxiety as well. I feel badly that we didn't catch this sooner, because I think it has had an impact on him psychologically. And I feel responsible for my part in that.

Edited February 25, 2016 by Storygirl

[1shortmomto4]

Do not take on that woulda/shoulda guilt - no no no.  That doesn't help anyone - most of all your precious ds.  My ds went undiagnosed for 15 years!!!!!  He passed the hearing tests at birth (supposedly), the ones at every well-visit and the ones at school but his behavior and work at school was steadily regressing.  They told me that he needed to take school seriously.  Uh no, hindsight was that this was his coping behavior that he had developed and fine tuned over the years. 

 

What we learned was that his hearing loss was present at birth but everyone missed it.  (If you have old home movies watch them and see if you see any signs.)  He was our first so we trusted all the experts.  They know everything, right? There was always this nagging feeling but everyone kept saying it was just him being immature, blah blah, blah.  Well, he couldn't pass the hearing screening at his 15 year well visit and we were off to the ENT who had him tested with his audiologist and then the MRI and then the HA.  Sadly, there was a lot of emotional damage done and to this day we're still unraveling it all BUT he's doing awesome.  This kiddo, who thought life was over because his dreams were shot after this diagnosis, has slowly but steadily taken community college courses and will graduate with a B average in May.  He will move on to the next learning institution.  It has been a battle but so worth the fight. 

 

I'm not sure that I'd try out not using the HAs.  He really hasn't had them that long.  Maybe ask the ENT before doing that.  Have you begun to see an improvement in his behaviors? It won't happen overnight.  This takes time and there will be times of growth and regression.  When there is an impairment in the body the natural response is for the person to stop maturing.  The body compensates for the loss and takes up necessary resources that would have been used for the maturing process but once the problem has been identified and remedied the maturing process starts back up - slowly - and then they are off again.  It takes time to catch up to his peers.

 

Now, couple any hearing loss with other issues - maybe ADHD (the inattentiveness) and now you're dealing with a double the fun.  Or through in dylsexia or APD (that you can't fully diagnose because they are unable to fully undergo the testing accurately) but some how it will really be okay.  It will work out.  You learn to champion for their causes and they learn from you and will be able to take over fighting for and receiving the help or assistance and finding a path in adult life that is positive and rewarding.  it is just going to be one heck of a roller coaster ride and you got to hang on tight!  Just wait for the teen years ;-)

 

And the only thing I know about any fluctuation in hearing tests have been with any fluid build up or perhaps he is very wise and able to discern the tester's questions and guesses well.  These little guys are very smart.

 

 

[Storygirl]

Thanks, I try not to blame myself. There is a big element of "if I had known, I would have done so many things completely differently." I do think that's a normal thing we all go through. I regret that it has impacted our relationship. There is no reason to stay in that place, though -- we have to move onward to find solutions and rebuild on a better foundation. :thumbup1:

 

I'm okay with him doing without the hearing aids for a bit. We are taking it day by day, and I don't think he will keep them off for very long. I think he will find he has a definite preference for using them, which is what the audiologist wants to determine. She doesn't want him to use them just because adults have told him to. She wants him to have ownership of it.

[Storygirl]

For others who might read this thread, searching for answers, I'll share what I have learned after a night of researching online. So this is in no way a definitive or authoritative list. Just a compilation of information collected by a mom.

 

Conditions that may cause fluctuating hearing loss:

 

1) Ear wax, fluid build up, ear infections, change in pressure (what happens on a plane). These would cause a conductive hearing loss (DS has a sensorineural hearing loss).

 

2) Meniere's Disease. Usually accompanied by vertigo and tinnitus. Usually only diagnosed in adults who have had other problems ruled out.

 

3) Congenital cytomegalovirus infection (CMV). Hearing loss may not be evident as a baby but may arise later in childhood.

 

4) Auditory neuropathy spectrum disorder (ANSD). Often discovered in infancy, because a problem with the nerves may result in severe hearing loss and speech-language perception that is caught early on. However, mild cases (rare) may present with fairly typical hearing but poor speech perception, particularly in noisy places, and not be diagnosed until later in life. Sometimes misdiagnosed as CAPD.

 

5) Autoimmune disease of the inner ear

 

6) Enlarged vestibular aqueduct syndrome

 

7) Fistula -- abnormal connection between the air-filled middle ear and fluid-filled inner ear.

 

I'm sure there are numerous other possibilities, but these seem the most common mentioned online. Most fluctuating hearing loss is conductive (option 1).

Edited February 25, 2016 by Storygirl

[Storygirl]

Now I am anxiously waiting to find out what the ENT has to say. I suspect it may be mild ANSD, because the symptoms seem to describe DS exactly. And the audiologist did say she thought the ENT would find him very interesting, because one of the doctor's specialties is neurology. But we shall see.

[Arcadia]

As for ear wax, my DS11's dry ear wax is not obvious unless someone shine a light source into his ear, which the nurses never did but his pediatrician does do that at well child checkups. It is when his ear wax flows out that the nurses would notice and he gets good generic hearing test results because his ears aren't clogged with dry ear wax.