Aug 26, 2013  •  In Aerin, Motherhood, Personal

Two Counts of Medical Drama, Act Two

I brought Aerin to see an ENT specialist on Friday morning, just before I headed over to my parents’. And what the doctor found wasn’t too pretty.

First, he found some obstruction (a combination of dead skin cells and earwax) deep inside her ear canal. He was able to remove it with a special instrument, and holy cow did he take out A LOT of gunk! I couldn’t believe all that stuff came out of her little ears.

After the removal, he was able to take a better look and saw that she had fluid in both ears. Otherwise known as “otitis media with effusion” (OME), this buildup of fluid in the middle ear usually goes away on its own, but in some cases, it can last weeks, and sometimes even months!

What’s especially concerning about OME is that it does not show signs of infections such as pain, fever, redness, or pus. And guessing by the buildup of gunk in both of Aerin’s ears, the doctor told me that there’s a good chance my poor little girl has been suffering for a while, with the only symptom being hearing loss.

And the hearing test that immediately followed confirmed it.

“See this graph? It should be showing peaks and valleys…but as you can see, Aerin’s is relatively flat.”

According to the American Academy of Otolaryngology,

All children with middle ear infection or fluid have some degree of hearing loss. The average hearing loss in ears with fluid is 24 decibels…equivalent to wearing ear plugs. (Twenty-four decibels is about the level of the very softest of whispers.) Thicker fluid can cause much more loss, up to 45 decibels (the range of conversational speech).

The doctor gently plugged my own ears so that I could get a sense of what the world must sound like to her. I could still hear, but everything was muffled, similar to an underwater environment.

I wanted to cry in response.

He prescribed an antibiotic in hopes that it will help alleviate her OME. We are to return in nine weeks, which is when most (about 90%) children who go through this treatment are found to be clear of any excess fluid in their ears. If Aerin is in the unlucky 10%, we will have to take more aggressive measures, such as tubes in her ears.

Being rid of her OME doesn’t automatically clear us either; she still needs to pass a hearing test afterwards to ensure that there is no nerve damage.

Of course the diagnosis was met with a ton of questions from my end.

Should I have been cleaning her ears? I was told that I don’t need to do anything to my kids’ ears…is any of this my fault?
No, you shouldn’t be cleaning her ears. There is a very slight chance that when you had an appendectomy while you were pregnant with her, the IV antibiotics may have interfered with her hearing. But since she passed her newborn hearing test, this is unlikely.

Why didn’t our pediatrician pick this up?
It says in her chart that they were never able to perform a full hearing test after her ear infection earlier this year. Sometimes they’re limited by their equipment. Also, the obstruction was very deep inside her ear canal, and they’re usually trained only to look for redness or pus.

Could this be the cause for her speech and cognitive delays?
It may not be the only cause, but it probably played a big part.

I wanted to kick myself. Why hadn’t I pushed for an ENT referral earlier? (Even just getting an appointment took over a month!) Why was I satisfied with the dinky handheld hearing test machine at our pediatrician’s office when this doctor has a ridiculous setup of equipment and machines that takes up an entire room?

Most importantly, why hadn’t I noticed that my own daughter has trouble hearing?

That’s when I began to see, in my head, all the missed signs. Like how she doesn’t always respond to her name. How she definitely understands me better when I am facing her, speaking in a loud, clear voice. How she LOVES music — it’s because she can feel the beats with her body too!

I had incorrectly been attributing these to her personality and developmental delays, when the problem was, in fact, a physical one.

Even just the removal of the buildup in her ear canal seems to have made a small difference. When we got in the car after the appointment and I turned on some music, she made a series of expressions that I will never forget. First, delight. (Music! Yay!) Then, surprise. (Wait, this seems so much louder and clearer…) After that, concern and concentration. (Hmm why does it sound so different?) See for yourself in the picture below. I was able to take this snapshot during the last phase.

2013-08-26-09-32-18_deco

Unfortunately, Aerin seems to be having a bad reaction to the antibiotic (cefdinir) — it is causing her to have tummyaches and bad diarrhea, and with her sensitive skin, she gets horrible diaper rashes whenever she has diarrhea. I will be calling the doctor as soon as his office opens to see if he can switch her to another antibiotic. In the meantime, we have stopped giving her the medicine and have been giving her extra probiotics.

I have also emailed our early intervention representative with the results. I don’t think we will be canceling the services, as treating Aerin’s hearing loss may last a few months. Even if her hearing were to be fully restored tomorrow, I would still want to proceed with therapy so that she can catch up to her peers.

However, I did ask that our therapists be trained in, or at least have experience with kids with hearing losses or kids who are recovering from hearing losses.

The good news is that the doctor observed Aerin’s delays to be not nearly as bad as other kids her age with similar hearing problems. He said that the fact that she regularly says more than 20 words/phrases is a very good sign, and predicted that she will catch up in no time once her hearing is restored.

13 Responses to “Two Counts of Medical Drama, Act Two”

  1. I’ve been a long-time lurker, but just thought I would let you know a little about our experience with just about everything you are talking about. My son is now 22 months, but at 15 months we were referred to early intervention for gross motor skills, and they eval actually showed he was much more behind with his communication skills. Over the winter we had a series of pretty nasty ear infections and as part of the EI eval they do a standard hearing test. Our hearing test showed fluid on the ears, and similarly, we did antibiotics and a re-test of his hearing 1 month later. The fluid did not improve and finally after 3 failed hearing tests with EI, we were given a referral for the ENT. At the time I was thinking back over the first year and half of his life and thinking the exact same thing – no wonder he isn’t always responsive, and doesn’t always notice loud noises, etc. He had been experiencing life as though he were underwater – could hear just enough but everything was muffled. Throughout this time we started our therapy sessions for both the gross motor skills, and to work on both receptive and expression communication and my son was making great progress with his gross motor skills, and some marginal progress with communication. The ENT did recommend tubes, which we had put in at the end of June. We have not had an ear infection again, or any cold for that matter, and of course the fluid is no longer an issue. We are also seeing a vocabulary explosion and although we are still working on his speech weekly, I can sense a whole new level of confidence from my son. I do feel we could probably “graduate” from early intervention, but I haven’t pushed it because I do appreciate the attention and play techniques they share with us. My son had been very reserved, and was not interacting with other children and a month ago he for the first time approached another child and said “Hi.” He trusts what he is hearing, and is able to now use his language with others. It has been a lot of mommy stress, but I’m very happy with the path we have gone down with the tubes and early intervention. If you have any questions about my experiences please don’t hesitate to reach out.

  2. Nancy:

    Cefinir causes poop to turn red. So don’t be alarm if you see that in her bowel movement. It’s good to hear that you got the ENT consult for her. My daughter Olivia had/has delay speech problem and I believe it was attributed to her chronic ear infection. Once the infection goes away, she’s back to being normal. That’s the pattern I saw. I really believe Aerin will catch up on all her delays by age of 2 1/2.

  3. Emily:

    I wanted to add a comment, and this is in absolutely NO way meant to imply that other parents of kids with hearing losses are doing anything wrong, but here you were worrying that you weren’t doing enough to engage her possible developmental delays, when in fact, you guys are engaging her enough that her speech is still coming along in spite of the hearing! As for noticing it earlier, everything you mentioned is also in line the kinds of delays you were concerned about, and because she could hear some, I can only imagine that it would be difficult to notice that kind of hearing loss in such a little kid. I’m so glad this whole thing is getting resolved.

  4. I hope and pray that your family is doing well!
    Keep us updated on your mom and Aerin. I will tell you that i know how you feel when it comes to your parents. I wish that i lived much closer to them, but being in Tennessee makes it really hard! but let us know =)

  5. In many ways, I almost feel like this is the best case scenario for something that could have been so much worse. I’m sure Aerin will catch up in no time at all, especially with your proactive parenting!!

  6. Christine:

    I’m posting for you and your precious baby girl. my daughter had the nasty, hard, black stuff removed from her ear. she is an “over ear wax producer”, so we use wally’s ointment and an ear syringe to help keep it clear. when my daughter doesn’t respond to me calling her, I clear the blackstuff out of her ears and she is able to hear again. funny, my.ped never referred me to an ENT, but I would like tospeak to one about this. thanks for sharing.

  7. kim:

    I am so happy that you have some answers. I have 4 children. 3 had tubes in their ears. My oldest are twins. We found out he had obstruction which caused serious speech delays. He took speech therapy from 2 until middle school, but he didn’t want to have to keep coming out of class. His delay was pretty bad and as a young adult he still has to slow down when he speaks, but he holds a job, is in the Army National Guard. He had other developmental delays and ADD. It was a trying time, but we made it. His twin had tubes and the infections stopped when she had surgery. However, at 12 she had another ear infection and our pediatrician pulled out a mass of wax, about the size and shape of candy corn. However, she had no issues. My other child had no issues after the tubes. Hopefully, Aerin won’t either, medical science has changed so much. I wish you the best!

  8. judy:

    My son(now 25) had the same condition. I was having all kinds of testing done and finally one doctor sent us over to the specialist and I wanted to die with the amount of wax and other stuff taken out of his ears. After the medication treatment he was back on track where he should have been withing 3 months!!! I hope this is the case for you.

    And believe it or not our pediatrician always swore by putting liquid malox or something similar on their diaper rash when it was caused by meds or anything else. It really did work wonders because it pulls the acid out.

    Good luck and remember being a mom is always a learning experience…I had three and was always learning

  9. Mina:

    so glad you found some information and help for her ear buildup, even though it’s heartbreaking that it happened in the first place. it’s going to be like a whole new world for her!

  10. Wow! Thank you so much for posting this – its so informative for parents. Aerin’s face in that last picture is so adorable; if only she were old enough to articulate what it was like to hear music clearly for the first time. I hope everything is progressing well with your mom as well.

  11. MrsW:

    It’s funny… in the paragraph when you were talking about kicking yourself, I was just thinking, “Wow, Jenny is such a proactive parent and fights SO hard to make sure her girls have the best care and assistance she can find.” You are a great mom. I hope that Aerin is enjoying her new world of sound. :)

  12. Olive:

    Hey. I too, am a lurker. I’ve been following you since your wedding bee days as I was also looking for a makeup artist for Asian gals and my husband and I are also a Korean/Chinese couple. And then I had a baby so I’ve been following your kid posts and mama posts and makeup posts here :). But I also happen to be an ent doc. Cefdinir is best tolerated by kids bc it doesn’t taste as nasty. That’s probably why you were prescribed it. A large reason why antibiotics fail is lack of compliance, which can then lead to antibiotic resistance. There are some alternative antibiotics, but they may taste bad (or also cause diarrhea). Sometimes the fluid also clears on its own even without antibiotics. Medicine is an inexact science at times.

    Last but not least. Do NOT clean your kids ears. I have seen eardrum perforations from over enthusiastic cleaning. And also fished qtip heads out of people’s ears. You can clear around the outside but nothing should go inside the ear. If aerins ears are healthy, you can put some mineral oil or even olive oil in there before bed to keep the wax soft. It also serves as a lubricant so the wax can come out on its own.

    Good luck with everything! If it comes to tubes, don’t worry. It’s a super short and easy surgery, and pretty painless. She probably won’t even notice.

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