Wednesday, March 4, 2009

On Hearing, Down Syndrome, and All These Blasted Emotions

Finn went in for his hearing evaluation this morning. I was fully prepared to be a raging bitch if I was kept waiting more than a few minutes past our appointment time, but (a) a different, much more pleasant receptionist was behind the counter today, and (b) they called us back right on time.

First the audiologist takes us back to this little room and asks me if I understand why our pediatrician referred us. "My understanding is that he just wants to get a baseline evaluation because Finn has Down syndrome, and I understand that hearing issues are often associated with Down syndrome." So she explained to me that the hearing issues typically associated with Ds are not so much anatomical, as in a malformation of the ear drum or something like that, but rather, it's usually the result of fluid buildup in the inner ear, which is usually a temporary, but long-term issue.

Uh huh, uh huh. I'm really just thinking, "Okay, we're just here for a routine screening. Finn passed his newborn hearing screening, he's such a light sleeper that I swear he can hear me breathing in the next room, so let's just get through this song and dance and we'll be on our way."

So she sticks the little things in Finn's ears to measure whatever it is they measure, and she tells me that he does indeed have fluid in both inner ears.

My heart sank a little.

Then she takes us to the sound-booth. I sit down with Finn on my lap facing away from me. She goes to the adjacent room, and we can see her through the window. She starts sending different sounds through the speakers on either side of the room, alternately.

Finn did not react or respond in any way to any of the sounds.

I felt my heart seizing up. And then the tears. Why oh why do I have to break down and cry over every damn thing lately? I hate hate hate this wimpy wussy weakling I'm turning into.

She came back into the room and sat down while I sat there sniffling. She said that she would guess that Finn can, in fact, hear, but probably not as well as he should because of the fluid in his ears. She said that his failure to respond to the sounds could be due to cognitive delays (what I heard was "Maybe your baby is too retarded to know how to react.") She's going to send her report to our pediatrician and recommend that we be referred to an ENT, who will likely recommend tubes in Finn's ears. She suspects that that will make a big difference, and she wants to see him again in 2 - 3 months and do another hearing eval.

So, tubes, most likely. Not a big deal in the grand scheme of things, but it broke my heart just a little more today. Something else is wrong. And I feel just a little closer to the breaking point.

Here's the thing: I really thought I had made my peace with this whole Down syndrome thing. But my feelings about today make me question that. Yeah, I'm okay with it as long as he's more normal than not. As long as I can convince myself that he's "high-functioning," that his delays are minimal, that he doesn't have a lot of the problems often associated with Ds. Because, you know, he's supposed to be the superstar, the exception. And I feel like utter crap for having those feelings.

And tubes? Eh, big deal, right? Right. It could be so much worse - there are way bigger things that he could have - serious things that would jeopardize his overall health and well-being. So I should be thankful.

But instead, I'm sitting here having a little pity party.


Anonymous said...

My daughter has had ear tubes since she was Finn's age or so and it made a huge difference in the amount of colds she gets and her speech. She also had her adenoids out and that meant even less congestion and colds this winter, thus less fluid in the ears. Biggest pain is the ear plugs for swimming but that's not so big actually. I don't see that as any diff than many typical kids with allergies, chronic ear infections,etc. Hang in there and try to manage the negative thoughts since they are not all related to Finn I think. You have a lot going on and it's bound to spill over. I'm amazed that you are doing as well as you are!

Kara said...

I finally have a child with tubes. My youngest (not ds) just got tubes in her ears a month ago, at 17 months. The difference in her babbling now- she's pretty non-verbal- is astonishing. She had quite a bit of fluid drainage for the first two days. I can only imagine what things have sounded like to her for the past few months. I'm more happy that she probably won't need to be on anti-biotics as much anymore!

Wendy P said...

Oh, Lisa, I'm so sorry! You're perfectly entitled to a pity party - y'all are having rough times lately!

Try not to worry too much about the hearing test, at least until they test again. Things can change. Kira failed her first hearing test and I was shocked. She ended up not needing tubes, though. She had heart surgery (PDA closure) and her lungs and ears just dried right out.

Also - I replied to your comment on speech therapy on my blog - just wanted to make sure you saw it.

Hope tomorrow's a better day!

Megan said...

L - we just went thru that mother effen behavioral hearing test with S. She was sitting on my lap and I was willing her to respond to the noises. Nothing. Our audiologist (at our ENT) said that, regardless of chromosomes, these tests are pretty useless in the age group that our kids fall into. Finn probably just didn't feel like looking or whatever. And she also said it's pretty useless that we have to do follow-ups every 6 mos with an audiologist as Ds isn't the same as having a history of congential hearing loss.

On the tubes (maybe I should have just emailed all this long winded crap), I wouldn't even get set that he's going to have tubes. The ENT will likely just want to keep an eye on him (read: have appts every 2-3 mos), and see how the fluid thing progresses. He may have fluid now and not tomorrow; or it may sit there for ages. You can't tell that from just one check-up, yanno?

And, you're right, tubes aren't a big deal. Hell, tubes are typical! However, you have a right to be upset if there's a challenge your kid may have!

My name is Sarah said...

This is Joyce wallowing in your pity party with you. You deserve a good party or two. Maybe even three or four.

The ears - I don't know. I just don't know. Seems ear tubes are the thing of this decade. I often hear moms talk about what a big difference they make, but I wonder if a few tests(not that you want to rush back there) are not warranted before making the decision. He is such a little guy, maybe he truly didn't know what to do.

Wendy P said...

Lisa - sorry to comment twice - but did they do a tympanogram? I think that might have been what they did first. That's where they check how Finn's eardrum vibrates in relation to sound waves. If they didn't, you might ask for one.

Also, once Kira failed the first test, we had an ABR under sedation. She had to have an echo under sedation anyway, so we went ahead and did it then. It showed that she had no hearing damage, which was really reassuring. I wouldn't go to that extreme right now, but it's something to consider.

We saw an ENT who recommended tubes after seeing Kira for like 30 seconds. He wanted to put the tubes in when we attempted to close up her PDA (heart issue) with a device. Luckily, her cardiologist said, "absolutely not." We ended up having to go in through her side to close her PDA (biggest the head of cardiology had ever seen) and, as I said before, we were all better after that. I think Joyce is right, in that, tubes are just what people do now.

Point of this novel - I think that we get bogged down in "our kids have Ds and this is how it is." We're hesitant to get second opinions, we assume that the experts "know". We want people to see our kids as the amazing individuals they are and then we get side-tracked by the fact that this is a totally new journey for us, too.

Follow your instincts - Finn is an amazing (and gorgeous, btw) baby.

Tricia said...

Georgia always fails her tympanogram in her right ear (the ear drum vibration thing) but so far they have recommended regularly cleaning out the wax. We never did the sound booth thing until Georgia was a fair bit older than Finn so she has passed that several times (we go every 6 months), but I really don't think she would have at such a young age. You might be surprised, the ENT might want to do the wait and see approach.


Ruby's Mom said...

Oh,Lisa,I'm right there with you at the pitty party.Ruby's Pedi. wants her to see an ENT and said she will probably need tubes in her ears and her tonsils out,and two weeks ago at her OT eval I could really see Ruby's weakness in her left arm.She would reach for toys with her right arm but just clung to herself with her left.Danged Ds.

Lovin Mama said...

nak. Goldie went for a hearing test at 7 mos because she wasn't locating sounds. They did not do the test in the booth, just the ones w/ things in her ears. The aud. said at 7 mos she should only be beginning to turn toward sounds and didn't think I should be at all worried. Within a month she was responding to noises. What I'm trying to say is it might not be as bad as they led you to believe.

Lisa B said...

Lisa I should have warned you - Matty did the booth test when he was entering speech therapy - mind you at age 2 years 9 months - and he only responded to a few of the noises then quit reacting at all - my heart sank too. So for an infant to ignore the noises I would think is pretty typical...The gal said kids do ignore the booth noises and she did the test with the sound waves in his ears and that turned out normal so thus no further hearing testing for him at that point. I definitely think you have to see what the ENT says about the tubes and even then one ENT will say Yes and another No looking at the same kid...Judy did tubes with Grace so you can talk to her about that too...Hang in there :) Lisa

Michelle said...

You are so not alone in your emotions! I remember feeling so upset at Kayla's first visit to the ENT too. She was about 4 months and it was also just a routine/precautionary visit too. I remember the ENT pretty much said she would need tubes because she had Ds and that pissed me off; I wanted to prove him wrong. She did indeed have fluid in her ear drums (but only once did she ever have an ear infection, she never had chronic ear infections from the fluid.) So we held off cause I wanted to see if they would clear up...and then I felt guilty for that cause I thought what if her speech is more delayed because she can't hear things clearly, because it sounds like she's under water. But I was convinced she could hear because we would "test" her at home LOL She's on her 4th set of tubes. Every time we've gone in and the ENT has said one or both of the tubes is out my heart still sinks at having to go through it all again - even though I know there could be worse medical conditions. Hugs to you both!

heather said...

I have a strong opinion on this one...ok so I have a strong opinion on everything, but this is my take on it. I feel like EVERY child born with Ds should get tubes within the first 6 months of life. The anatomy of their ear canals is smaller and makes them prone to fluid behind their eardrums which can cause permanent hearing loss and speech delays. Most of the pediatricians have a hard time even being able to see their eardrums during that first year so would never know if there was a chronic fluid problem. Morgan's pediatrician kept saying that her ears looked fine, no infection just fluid. I finally went to an ENT on my own who let me know that chronic fluid cannot be ignored. It was such an easy procedure--15 minutes and she has been great. We took it a step further when she was 2 years old and got a tonsillectomy and adenoidectomy to help her with breathing at night after doing a sleep study (but thats a whole different soap box!) Also kids don't need to wear earplugs when swimming. If your ENT recommends that then he/she is not up on current research--chlorinated pools do not cause any increased risk of infection. We haven't ever used earplugs on Morgan and she hasn't ever acted like the water bothers her ears when she is swimming.

Jeanette said...

We JUST went through the ENT and Syd's first hearing test since passing the newborn test. We weren't recommended to go until she was a year. My procrastination didn't get us there until 17 months old. She did ok in the booth, but I can't imagine doing that any earlier. She didn't pass the vibrations in the ear test b/c of too much wax... an ongoing problem for her. The doc told us to put hydrogen peroxide in her ear after baths to soften the wax. Anyway, it won't hurt Finn or anyone else to get a second opinion. I highly recommend going to see an ENT that is recommended for working with children with DS. Talk to your local DS assoc for recommendations or to some mom's in your area.

And for the record... pity parties are to be expected... I just had one myself two weeks ago when I was around kids walking that were younger than Syd. Just another day in the life of the DS landmine field. You are in good company... cut yourself some slack.

John Austin said...

Lisa, I feel bad that you had this kind of outcome. It sounds to me that this Audiologist maybe did not explain things well. Does your ENT not have an Audiologist on staff? My first question would be why would this Audiologist proceed with the testing if Finn had fluid in his ears? I would disagree with her telling you that hearing problems are not due to anatomical differences. The hearing issues of children with Ds are due to both anatomical and physiological. The ear canal and nasal passages of children with Ds make it difficult for their ears to drain. Their immune system is a little weaker which is also a factor.

Michelle said...

I would love to join your pity party:) I leave most doctor appointments with the same feelings. Matthew has been seeing an ENT from the moment he was fresh out of the womb.....okay, maybe not that long. LOL! He had his first set of tubes before he was one. He had fluid and several ear infections beforehand. Because we had experienced it with his older brother (he is on set #3) we were very open to having the tubes. We saw immediate difference after having them put in.

And on the sound booth - I would say he is probably too young. Matty was about 11 months when we went to a follow up hearing test at the ENT. He didn't even flinch in the sound booth and they did another exam to measure sound waves in his ear. He failed that too. The audiologist and doctor had me convinced he had permanent hearing loss. We were sent to have a BAER hearing test and it ended up being normal.

sorry for rambling! sending you big hugs.

Jen said...

Yeah, that whole sound booth test is useless on a kid Finn's age. I don't think they put Evan in a booth until he was at least 1. I can't remember. But I know he did not have that sound booth test when he was an infant, because our audiologist said most babies that age don't know what to do. DS or not.

You are certainly entitled to feel the way you do. It's just one more thing on top of one more thing, you know? I remember feeling that way when we were going through the thyroid crap when Evan was maybe one or one and a half. He ended up not needing the meds, but for a while we weren't sure, and I was really feeling sorry for him (and myself, mostly) when it was a possibility. Just one more DS characteristic to put on the stupid checklist, you know?

Evan is almost 3. I still have days (and they are plenty, let me tell you) when the DS really gets me down. No pun intended. It's hard on a parent. And you shouldn't feel bad about that. Hugs to you, okay?

Chrystal said...

You've received lots of good feedback on this already, so I'll keep it brief.

I understand. I've had the same feelings and questions. Finn's most likely too young for that damn booth test (oh, have I been THERE!). It's more than ok to feel how you're feeling.

Hector and Jennifer Varanini Sanchez said...

Let me know if you want to chat about this more. Joaquin has tubes for fluid and yes, it made an immediate difference but we have also had 2 ear infections since the tubes where we didn't have any before they were placed. So, I'm torn. I am happy his hearing is excellent but bummed that it seems to have increased his risk for infections.

Keri said...

My brother (not ds) never had tubes as a toddler, but probably should have. I think tubes were still new back in the early 80s, so the pediatrician didn't push them. As a result, my brother has a permanent hearing loss, not severe, but about 10%.

My cousin (ds) had tubes because of large fluid build up in her ears as a toddler (don't think her hearing was tested until she was 2), this was also in the early 80s. Originally, her mother was told that she would have severe hearing loss and they started teaching her sign language. She has a slight hearing loss (has a hard time distinguishing words in a crowded room), but nothing that holds her back.

Tausha said...

Here's the thing: I really thought I had made my peace with this whole Down syndrome thing. But my feelings about today make me question that. Yeah, I'm okay with it as long as he's more normal than not. As long as I can convince myself that he's "high-functioning," that his delays are minimal, that he doesn't have a lot of the problems often associated with Ds. Because, you know, he's supposed to be the superstar, the exception. And I feel like utter crap for having those feelings.
(Okay, I have felt the same exact thing about little Sam, exactly. That his is goign to be the superstar of Down syndrome kids - Glad I am not the only one feeling that. I believe you have made peace with the DS thing, but even though you have doesn't mean you get upset or feel bad and sad when an issue comes up, that is completely normal. I know you would feel that way with any of your other kids. Don't be so hard on yourself and go ahead and have a pitty party once and awhile.)

datri said...

Kayla failed all her newborn hearing screening tests. We went to see an audiologist who felt that she would have severe to profound hearing loss. I was devastated. Then we went to do an BAER test (like an ABR) and it was fine, so we thought everything was fine!

Unfortunately, I was misinformed. Although Kayla didn't have any ear infections, she had a lot of fluid in her ears. And we didn't catch it until she was THREE when she got her first set of tubes.

And she was also completely useless in that sound booth!

A bit part of me wonders if she would be more verbal if we had gotten her tubes earlier.

Another thing, although I completely understand you wanting Finn to be that DS Superstar, I hope over time you will be able to let those feelings go.

We were always told that Kayla would be "high-functioning". Up until age 1 1/2 she was meeting all her goals close to typical age.

And then things changed and now she will definitely not be "high functioning" and it was like being smacked in the face with that diagnosis all over again. And it hurt. Badly.

Maybe if I hadn't pinned all my hopes on her being a superstar I wouldn't have hurt so badly when hit with the autism diagnosis.