Tuesday, November 28, 2006

Not what I wanted to hear, but not so bad either

Real quick, because I know some of you are wondering: Thanksgiving went fine, grandfather is all moved and I am not nearly as stressed anymore having actually seen the facility myself, and no I did not get to see a movie. In fact, I hardly watched any television of any kind, much less went to the theater. But that isn't the point of today's post.

Luke had his hearing evaluation today. Children's Healthcare of Atlanta requires a hearting evaluation before any speech evaluation is allowed. I wasn't concerned. He can hear the television come on from a room away; his hearing is fine. Right? All we had to do was prove it to some silly machines. No problem. He'll pass the hearing exam, then we will proceed to his speech evaluation on Thursday (as in, the day after tomorrow), and we will finally get some answers.

The test itself mostly went well. He did fine with all of the inner ear testing (air puff and tonal imaging), which actually surprised me a little. He did NOT want to go into the quiet room for the rest of the test (noises of various tones and volumes coming from different directions). He fussed and squirmed, not wanting to sit in his own chair or in my lap. Once she actually started the test, he did pretty well for the first 2/3, but it was blue-blazing hot in there (at least 85 degrees, and we were both in jeans and long sleeves) and he was desperate to get down by the end.

I know things could be so much worse, but having a Doctor of Audiology say "your child's hearing is below normal" just does not boost your spirits. (Full details in a minute, if you are still interested after reading this paragraph.) The good news: it is almost certainly cureable, and once cured, the speech issues will probably resolve themselves without intervention (though he will still be tested to be sure). The bad news: until the ear issues are resolved, there is no point in continuing with any evaluations or treatment. Thus our Thursday speech evaluation has been cancelled until further notice.

The details (warning, this is going to be long): She believes that his hearing is being decreased by fluid in the middle ear. When she puffed air at his eardrum, the machine sent back a curve representing the deflection of the eardrum. It should look like a steep hill (think Stone Mountain, for all you locals). His came back looking like a contact lense flipped upside down. This is most likely caused by an obstruction preventing the ear drum from moving as much as it should, and in most cases, that obstruction is fluid. This was confirmed by some brief tonal tests to try and get a picture of the inner ear. All of the information came back garbled, due to passing through the obstruction twice, on the way into and out of the ear. That is actually a good thing, since it essentially confirms the obstruction diagnosis. (If the deflection test had come back poor but the tonal test had come back clear, then it would have indicated a problem with the eardrum itself, which is much harder to correct.) This causes two separate problems. One: it prevents the eardrum from vibrating as dynamically as it could otherwise, thus it is transmitting less sound. Two: the fluid itself also prevents soundwaves from being properly received by the rest of the ear. She thinks he really can hear just fine, but it is the nuances of speech that he cannot distinguish with his muffled ears, which is why his own speech is not progressing.

Then we moved to the quiet room. I remember this room from when *I* was a kid! It is a soundproof room where they play different noises from speakers to the left and right. Something I did not know: it isn't really testing for a problem in the left ear versus the right (they do a headphone test for that), it is simply trying to determine what sounds can be heard, if one ear is stronger than the other, and if both ears are working together to help echo-locate the direction of the sound. She would play a sound at the same time she flipped on a video monitor; left monitor for left sound, right monitor for right sounds. This was to condition him that if he heard a sound and looked in the correct direction, he would get to see a brief movie clip (maybe 2-3 seconds, mostly Disney films that I could identify, how sad). Then she would repeat the sounds at different volumes without turning on the monitor to see if he would look at the monitor on the correct side. I was in the room, and he was sitting in my lap. But I had to look straight ahead so as not to influence him to turn in one direction or another. It was one of the most heart-breaking moments of my life to realize that I was hearing things that he clearly was not.

He is the least below normal (two steps down, out of about 12) in the upper middle range of tones, similar to a woman's voice. His very high tones and his lower middle range tones are three steps below normal, and his very low tones are 4 steps below normal. This explains why he behaves more and reacts more to my voice than to my husband's. I always assumed it was because I stayed home with him for two years and he saw me as the "mean mommy" he had to listen to, while "fun daddy" didn't necessarily have to be obeyed. The fact is, he can literally hear my voice better than my quite bass-voiced husband's, thus he is more likely to respond. I had to laugh when she said "I don't know how much you know about physics?" Um, I'm an engineer. "On, then this will make perfect sense to you!" (At least she got a smile out of me.) Higher pitch tones have more energy than lower pitched tones of similar volume. The fluid in his ear causes those tones to dissipate energy before reaching the inner ear. The higher the pitch, the more easily they pass through the fluid. Lower tones simply don't have the energy to make it through. But super high pitches need assistance from the eardrum to pass effectively, and with its vibrations being affected by the fluid, those are not passing well either. So, he can most likely hear fine, it's just muffled.

You know how you hear when you have a cold? Or when your ears are plugged with water from swimming? That's what it is like all the time for him. This causes a two-fold problem. First off, it is difficult to hear others and understand what they are saying. But as adults, we know what most words sound like and have years (and years and years) experience with language to draw on, so it is easier for us to guess at what is being said, even if we don't quite catch it all. Luke has only two years experience to draw from, and with no idea of how long this has been a problem, he has no way to really hear the nuances of what we are saying. Which explains why when we try to do the ABCs with him, he says A fine, but B C D and E all sound the same when he says them, even if he is repeating each letter after us. He simply cannot hear the difference. Second issue: your own voice sounds louder to you. Some kids like that; once they get the fluid problem fixed, some children start talking very loudly because that is what they are accustomed to hearing. Others who are sensitive to loud noises (like Luke) may not like how loud their own voice sounds to their own ears, so they simply don't talk as much.

She also said that the problem is difficult to diagnose without specialized equipment. You can't really *see* middle ear fluid. You hear most about it with ear infections, but not because doctors can (generally) really see it. It isn't the infection that causes the fluid; it is that fluid gets back there and then gets infected. It is the infection that is being seen when the poke the light in there. So it is not that the doctors missed it, it's just that it is a difficult problem to detect simply by looking, especially when he doesn't have the usual symptom of chronic ear infections.

Obviously, the solution is to get the obstruction (presumably fluid) out of the middle ear. She said they will probably try some medications first to just dry it up. After informing her that we tried two different medications to help that after his last ear infection, and neither of them worked, she said they may send me to an ENT (Ear, Nose, and Throat specialist). Reading between the lines and hearing (loud and clear) what she did not say: surgery, as in ear tubes. That is not official from any doctor of any sort, but as I said, I heard what she didn't say as much as what she did, and I'd bet my house that she thinks that is where we are headed. They may try one or two more meds, but tubes is probably where we'll end up. And with as many times as I have spoken up to other frantic moms that ear tubes are no big deal, they are routine, and I myself had two sets as a kid, the thought of my baby having surgery still scares me. It doesn't terrify me like it does lots of people, but that's not to say that I won't be pacing every moment from the time I leave his side until the time he is back home safe and sound.

So, instead of a speech evaluation on Thursday, we have an appointment with his pediatrician to discuss the results. Because an ENT is a specialist, we have to get a referral from his primary care physician. The audiologist cannot do it for us. She is faxing her findings and her opinion of the matter to his pediatrician today, and hopefully it will be as simple as showing up, hearing "yes, he needs to see an ENT," and walking out with a referral. Trust me, you do NOT want to see me throw a fit about the medical care of my kid. I was raised by a nurse, and I know when you are treating me like a hysterical hyper-reactive mother (which I am generally just the opposite of). Don't push me! Shouldn't be an issue, though. I'll keep you posted.

But here is the other frustrating thing: none of this will happen quickly. Oh, we should get the referral quickly, and we will most likely be able to be seen by the ENT within a week or two of being referred. But they may try a round or two of meds to clear up the problem without surgery. Most likely two weeks per med. Now it is Christmas. Then the surgery, plus time for things to clear up. I'd say minimum of two weeks (likely longer); it is now mid-January. Now we can call for a repeat hearing test (required by Children's Healthcare). Last time I called, the earliest appointment I could get was 5 weeks out! Having been blessed to grow up in areas with very easy access to medical care, I think that is *outrageous*. (Yes, I know some of you have this problem on a routine basis, but I am admittedly spoiled and not used to it.) But there isn't much to be done about it, since I can't afford the tests out of my own pocket. We'll be generous and say it is now mid-February. And we'll be optimistic and say he passes with flying colors. Only now can I make a speech evaluation appointment, which will be another month away. We're talking St. Patrick's Day before we even find out if he has a speech problem!! I am NOT a patient person for this kind of thing. We have a diagnosis, we have a solution, FIX IT RIGHT NOW! Not four months from now before you can even tell me for sure if there is a problem; NOW. I hate all this waiting. It makes me crazy.

Who knows. Maybe by the time they *finally* get around to testing his speech, he'll be so recovered from fixing the fluid problem and finally being able to hear that his speech will have improved to the point that he sails through his speech evaluation with flying colors. One can hope, right?
Currently feeling: equally dismayed and relieved

7 comments:

  1. Oh, Erin! You poor thing.

    I know you've heard it before, but it really is a simple procedure. Marcus has had it done twice now. The first time, I was a wreck. I was much, much, much more upset that Marcus ever was - which was not at all.

    My saying so isn't going to make it any easier for you I know, but I'm sure all will be well and it will be better for Luke in the end.

    Hugs. Email me any time if you want to.

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  2. I'm sorry you are having to go through this with little Luke - but it's good that the problem was diagnosed at a young age and before you know it he will be chattering up a storm and you won't be able to shut him up! ((Hugs))

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  3. Oh, Erin! I'm sorry this is happening, but if this is the source of his speech delay, it is kind of relieving, isn't it? Atleast, there is a reason for it, and a treatment. I know, it doesn't make it any easier.

    I have to give you props about maintaining your listening abilities after hearing that there is a problem. I go into a void if I hear something is wrong with my baby, and forget to ask any questions and just start assuming the worst. I may not be hysterical, but I am not myself at the time.

    {Hugs} I totally agree with the Fix it now!

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  4. {{{hugs}}} I'm not normally a hysterical mom, and I was totally okay with the tube thing for Andy until they wouldn't let me go into surgery with him. We were *both* practically hysterical.

    But Andy did fine, and the tubes were a big help.

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  5. I went through the same thing as a child. I suffered from numerous ear infections that went untreated (I was in foster care for almost 2 years before being adopted) and have some major scarring. The good news is, that once my parents adopted me, got me to a good ENT doc and had tubes put in my ears, etc., my hearing returned to normal and I'm fine today. You're ahead of the curve with Luke. ;)
    Cathy

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  6. I'm so sorry. I'm glad it's fixable though. Let me know if there is anything that I can do.

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  7. I can still remember the terror I felt when the doctor told me that Bethany had an "innocent" heart murmur when she was a year old. I got really angry and told her that was as big an oxymoron as Jumbo Shrimp! She seems to have outgrown it for now... but I remember how scary that felt and send you BIG cyber dragon hugs!

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