Monday, July 20, 2009

Hearing Eval

The whole thing this morning started off on a bad note for me because our appointment was at 10:00 and they kept us waiting for a half hour. You might remember that when Finn went in for his initial hearing eval a few months ago, we were a few minutes late and they therefore refused to see us and I had to reschedule the appointment. I still haven't gotten over that. So we arrived 10 minutes early today just to be safe, and by 10:20 we still had not been called back. I was beyond irritated by this time. I finally went up to the front desk and asked how much longer I was going to be kept waiting. I had made plans to meet a friend with the kids for a playdate at 11:00, specifically remembering how militant the hearing center was about appointments and, therefore, having every confidence that we would be in and out of there in a timely manner. So I asked at the desk how much longer I was going to have to wait. The receptionist says, "Let me check with the audiologist." So she comes back a minute later and tells me, "She'll be with you in a little bit. She's just finishing up a phone call." I was this close to furious by now. I said, "How long, exactly, is a little bit? When we were here a few months ago, we were a few minutes late and you refused to see us." She just smiled and repeated, "She's just finishing up a phone call and will be with you in a little bit." Grrrr!! Ten more minutes went by, and I was seriously ready to storm out of there just to show them. Only, really, what would they have cared?

So finally we get called back. I tell her that Finn had tubes placed in June and seems to be responding to sound a lot more now. She does the tympanometry test which is good, no fluid. Then she takes us back to the sound booth.

Although Finn passed his newborn hearing screening in the NICU, he pretty much failed the hearing eval he had a few months ago. I remember being so crushed about it back then. Was my baby deaf and I had just missed it? Or was he so profoundly retarded that he couldn't respond? (I know that sounds terrible, but those are the thoughts that went through my head.) Being back in that little sound booth today, however, I realized how ridiculous it was that they would expect a baby of 7 or 8 months old - any baby of that age - to respond to all the sounds they project in the sound booth. Now, I know I'm not a doctor, and I'm not an audiologist, and I'm not a freaking scientist, so what do I know? But it seems to me that the sound booth eval is 99% behavioral. Which means that a lot could depend on the child's disposition, interest level, current state of tiredness, and anything that might be causing him discomfort/distraction, like . . . . um, say, a poopy diaper and a mother who left the diaper bag in her truck which is a big, long trek out to the parking structure. Or how about a kid who lives in a house with 7 other people and almost constant noise, and perhaps he's just not in the habit of responding to every little sound? And probably a lot of other possible factors.

Not that I'm admitting that my kid was sitting there in a poopy diaper and me with no spare diaper on hand. Anyway, despite the aforementioned, Finn really seemed to do well in the sound booth. He responded to most of the sounds. Not all, but most. After that last hearing eval, I was thrilled.

So the audiologist gets us out of the sound booth and leads us into a little office where she proceeds to tell me that while Finn did much better on this evaluation than he did a few months ago, she's still not seeing the response she'd like. Some of his responses (or absence of) are "not within the normal range." Sigh.

Here's the kicker: she wants Finn to undergo a sedated ABR! A hearing test that measures brain waves under sedation. God. Seriously?

I don't know what to do. I really am feeling so torn. I mean, of course I want him to have optimal hearing. Of course I am concerned about the impact this could have on his speech and development. On the other hand, really? A whole thing, a procedure, that requires sedation? I'm just not all keen to jump all over that right now. But the audiologist is writing up her report with her recommendation and submitting it to our pediatrician and ENT.

I don't know what to do.

12 comments:

Melissa said...

You might be interested in this, another bloggers recent experience with her son's sedated hearing test.

http://foreverbetter.blogspot.com/2009/07/hearing-test-bazillion.html

heather said...

We tried to do the ABR test with Morgan when she was a baby and asleep. We never got a definitive result on her test but she definitely hears us when we whisper and hasn't ever shown any signs of hearing loss. One person told me their ENT did the test after the tubes were placed while their child was still under anesthesia. Why don't all the ENTs do that when hearing is in question?

sheree said...

ugh. I would be torn too. I am sure we are headed in the same direction.

I agree that it is ludicrous to expect a baby to turn towards every sound in that weird little booth.

Sigh.

Mel said...

I think the tests are totally stupid too. Luke passed his one at birth and then failed the next. I was told he had moderate to severe hearing loss in both ears, which had been there since birth. When I asked how he had passed the initial tests, they were surprised as the results had been lost, so they didn't know that. They then said that the test was obviously inappropriate for his age, and put him down to be retested. I KNOW he can hear- he never misses a rustle! It's so distressing though to be told he can't. If I were you I would be asking what they would do if he wasn't hearing- if they would just be waiting, then I wouldn't bother or would wait until he needed some other tests done and see if they could do them all at once. If they would do something to help if his hearing weren't so good, I would be more likely to have it done. It's a tough one- good luck :)

Varsha said...

I know that it's not easy to put our kids through all these tests...despite everything Alisha has been through, it still bugs me when any doctor mentions the word sedation...it's like "Really....is there no other way??"

In any case, when we did the ABR with Alisha, we opted for a sleeping med instead of general anesthesia...it's a little more mild and doesn't have the side effects that anasthesia might have. I know it's not fun to use drugs at all...but if you do have to do it, just know that you have options.

datri said...

The behavioral tests are a complete waste of time, IMO. Kayla just had one (at age 5) and it was inconclusive, even after nearly an hour in the sound booth.

Now, the sedated ABR will let you know if there's anything wrong with the nerves used in hearing. Kayla had one done when she was 9 months old which came back fine and I thought we were done.

BUT, we didn't know that she had those small ear canals and fluid in her ears that were affecting her hearing. It wasn't until she was 3 years old that I realized that she wasn't hearing and then got tubes. And all of a sudden she was running around playing all her musical flashing toys as if hearing them for the first time.

I was kicking myself, because I felt that Kayla had lost at least two years of hearing and wondering if that is contributing to the fact that she is nonverbal. Sigh. But what is done is done. Can't dwell on it now.

Laurie said...

Hey Lisa,

First of all ((Hugs))!

We have also had not so great experiences with Dylan's hearing evals, so we will most likely be in your shoes after the next test in August.
I can also empathize as I am in a similar position with a recommendation that Dylan undergo an endoscopy and bronchoscopy. He will need to be put under...Ugh, how do you decide which things are necessary and which are precautionary? I dont know...

Also, I hear you on the oral motor stuff...in fact, I think I wrote a post about that very thing a while back.

Anyway, I know Im of no help, but just wanted to commiserate. Please let us know what you decide about the sedated test.

Thinking of you!

Carla said...

Argh! One more thing for you to consider. I so would have gone crazy on that woman for making you wait like that. Ggggrrr! Yay for no fluid!!!

Alisa said...

How great that there was no fluid! And what a pain this office is from the sounds of it!

For what it's worth, in our 6+years of audiology, I've noticed a few things. First, Lena often needed a little more processing time, and so they need to WAIT to give the child a chance to respond. Also, if they use music or their own voice saying her name, instead of just the bird whistles, or whatever, the accuracy of the test went up. And it's important to have the child sitting comfortably with good foot support and back support. If it feels too unstable to turn and look, Lena wouldn't turn and look, even when she could hear. Finally, I think kids with Ds are very tuned in to the emotional "landscape" around them, so if I was feeling hassled after an endless wait, Lena picked up on it and was less willing to be compliant. Some audiologists are better and more intuitive than others. So if you're not feeling the love, move on! Do your own version of the testing at home-can Finn hear you whisper? Does he hear Daddy's guitar from two rooms away? If you have a degree of confidence that he CAN hear, maybe you could ask to do the sound booth test again in a few months--he's still a little guy! Then, if you've given the audiologist some helpful hints about working best with Finn, etc., and he still has trouble, you can think about the next steps, sedation, etc.

Katie M said...

I've been a "stalker" on your blog for months. Your blog posts have always spoken to my heart and I have had so many of the same experiences and feelings that you have had. I felt compelled to comment on your latest entry because some of the Moms in our local Down syndrome support group have gone through the same thing that you are going through with Finn's hearing tests (i.e. "failing" the booth test and then being told that their child needs to be sedated for ABR). In every situation, these children hear just fine as proven by the Otoacoustic Emission test. This test does not require sedation (I absolutely despise it when medical professionals decide that they need to sedate our children because it is easier for those medical professionals to get the results that they want via sedation rather than working with our children to AVOID the sedation, but I digress).

The "Otoacoustic Emission" test, "measures an acoustic response produced by the inner ear (cochlea). The acoustic response measured is in essence, the response produced by the inner ear as it bounces back out of the ear in response to a sound stimulus. The test is performed by placing a small probe that contains a microphone and speaker into the child's ear. As the child sits or rests quietly, sounds are generated in the probe and responses that come back from the cochlea are recorded. Once the cochlea processes the sound, an electrical stimulus is sent to the brainstem, but in addition, there is a second and separate sound that does not travel up the nerve but comes back out into the child's ear canal. This "byproduct" is the otoacoustic emission. The emission is then recorded with the microphone probe and represented pictorially on a computer screen. The audiologist can tell which sounds yielded a response/emission and the strength of those responses. If there is an emission present for those sounds critical to speech comprehension, then the child has "passed" the hearing screen." You can read more about it here:
http://www.medicinenet.com/detecting_hearing_loss_in_children/page3.htm#tocg
And it does not require sedation (unless it is accompanied by an ABR). I wonder if the OAE test would give this audiologist enough additional information short of having to sedate Finn for the ABR. I'd seek a second opinion before agreeing to the sedation. This audiology clinic sounds like an absolute nightmare to deal with.

Lisa said...

Sheridan had the ABR test when he was just 3 months old - they didn't sedate him, they just asked me to bring him in when he was ready for a nap so he would be sleepy and (hopefully) fall asleep. He didn't sleep for the appointment, but was quiet and calm enough that they could do the test without sedation. Maybe ask if that's an option.

Larry said...

Lisa - when Matty had his hearing tested in the booth it was an ambiguous result but right away, when I was still there, the gal did the type of test Katie M. described and he passed it with flying colors and that was the end of it -the gal even said with little ones the booth test is not so great because of all of the various reasons have noted in their posts - kinda made me wonder why they don't skip the booth and go straight to the other one????? we did the whole thing at St Jude. I would definitely ask about that alternative....L