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Confusing hearing screens


KBear
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I hope this is the right place. I've been looking for info all day. Sorry this will be long. There are questions and a list of screen results at the bottom. 

My daughter (DD) will be three in March. She has sleep issues, extreme tantrums, hyperactivity, speech and social delays. She gets frustrated a lot, and doesn't like using her words. Her receptive communication is delayed. She omits the same letters from several words. I'm not sure if she hears certain words. She had two sets of tubes for high fluid, and her adenoids were taken out last month. She has failed the OAE in her L ear since May. She failed OAE in her R ear and both ears on the tympanometry (TY), when she needed tubes. 

Her follow up for the 2nd set of tubes was yesterday. She failed OAE in L ear. Passed TY on both ears. ENT said ears were clear of wax. She has not had any other mucus draining, or illness since recovering from surgery. He wants to retest in two months. He believes wax is causing it. He would not refer to audiology. Early intervention (EI) and Ped disagreed on waiting. The Ped sent a referral to audiology. 

ENT did not do a follow up screen after her first set of tubes. ENT is uncooperative with me and EI. He will not discuss screen results, or send them to EI. Only tells us pass or fail. EI's OAE does not go past two failed frequencies. So we only know that DD fails the first two. Ped only has TY.

The screen at birth was ABR. I was not present. She had it within hours of the csection. The nurse said she screamed the whole time. From what I've read, the screen may not detect high frequency hearing loss. I read screening too soon after csection birth, or while DD was screaming could give a false result. EI is trying to get those results. All I have is a paper with ABR marked pass, and OAE is crossed out. 

List of screen results:

March 2015 - hospital - ABR pass

2016 - EI and ENT - Numerous failed TY. Could not do OAE.

Sept 2016 - First tubes

May 2017 - EI - OAE: L failed. TY: both passed.

June 2017 - EI - OAE: L failed. TY: both borderline.

July 2017 - ENT - OAE: R passed. Could not do L. TY: R borderline. L failed.

Aug 2017 - Ped - TY: Both failed. 

9/1/17 - EI - OAE: L failed. TY: Both failed

9/20/17 - Ped - TY: Both failed

9/22/17 - ENT - OAE: L failed. TY: Both failed. 

11/15/17 - ENT - OAE: L failed. TY: Both passed. 

 

Questions. Why does he think it's wax if he can't see any? If it is wax, why did she pass the TY? Why is she only failing in the L ear OAE? Can ABR miss high frequency hearing loss? Especially considering she didn't have an OAE. Would the other factors affect the ABR result? 

Thank you for reading my novel. I'm worried and frustrated. Any advice is welcome.

 

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  • HearPeers Heroes

Welcome.  Your daughter is fortunate to have such a dedicated parent.  I wish her the best.

We can not give out medical advice here.  I am a Teacher of the Deaf and work with students who are hard-of-hearing and deaf.  I encourage you to seek info from an audiologist who is experienced in testing young children.  Hearing loss causes a lot of difficulties for youngsters and is best addressed as soon as possible.

 

good luck.

 

I will tag @Ivana Marinac to see if she has more suggestions for you and your family.

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Thank you for your response. I don't expect a diagnosis. I'm looking for information about the tests. Is that considered medical advice? She has an appointment with the audiologist. It seems like years away. 

I need to know how things work. I'm looking for answers on the accuracy of the tests. Basically, I want to know if it's possible she has had this hearing loss since birth. I read a study about how important it is to treat hearing loss within the first six months. 

I feel I am overreacting. At the same time, I feel I am underreacting. I also don't know if it's even possible to ever answer these questions, since she never had the OAE. In the study I read, the babies failed an OAE. They passed the ABR, and 24% had hearing loss. That contradicts studies that state the ABR is more accurate. 

I also want to know how accurate the TY test is at identifying whether ear wax is the problem. Does it only detect high fluid, or can it detect hard wax too? How accurate are all of these tests? What can they detect? What can they miss? Does the environment affect newborn screen accuracy?

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  • HearPeers Heroes

Hi @KBear

I am sorry that I do not know the answers to your questions.  I am glad you have an appointment with an audiologist.  An awesome audiologist will be a wonderful source of information and a great guide while you sort out your daughter’s hearing status.  

Does your Early Intervention team have a Teacher of the Deaf and Hearing Impaired on staff who can also help guide you?

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 I don't think so. We are in a rural area. I will ask at her transition meeting. 

I did reach the hospital where she was born. They said that test would not have detected this. I'm angry. Every study I read, that pushed for ABR only, was concerned about cost and sending too many kids to the audiologist. None of them cared about leaving kids behind. They talked about time constraints in the hospital. Isn't that what well checks are for? Why not do more screening throughout the first months? I've constantly read that it's crucial to get treatment started before six months of age. I'm so angry. I don't understand how it took three years to catch this. Hopefully the audiologist will have some good news. Right now I'm terrified that we are so behind on this.

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Hello KBear,

I thought I’d chime in, what your experiencing is the same thing my mother went through with me as a young child.  I was born at a time when very little resources were available for the hard of hearing and deaf children.  At a time when the medical community didn’t understand the urgency on achieving early diagnosis and intervention.  I was not formally diagnosed with my hearing deficit until 2 months before my fifth birthday.  I was definitely behind in speech and language.  In spite of the delays, with hard work I was mainstreamed and have a wonderful career. Trust your instincts, mothers usually know.  Continue to fight for your daughter and do what you think is best for your daughter. Keep working with the audiologist and anyone who can help you.  I wish the very best for you. Take one day at a time.

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20 hours ago, KBear said:

 I don't think so. We are in a rural area. I will ask at her transition meeting. 

I did reach the hospital where she was born. They said that test would not have detected this. I'm angry. Every study I read, that pushed for ABR only, was concerned about cost and sending too many kids to the audiologist. None of them cared about leaving kids behind. They talked about time constraints in the hospital. Isn't that what well checks are for? Why not do more screening throughout the first months? I've constantly read that it's crucial to get treatment started before six months of age. I'm so angry. I don't understand how it took three years to catch this. Hopefully the audiologist will have some good news. Right now I'm terrified that we are so behind on this.

Hi KBear, thanks for reaching out to the HearPeers community. I agree with @Mary Beth it's fantastic to see you are putting in so much time into finding out as much information as possible for your daughter. For many parents, this is often a time full of apprehension. I can connect you with a MED-EL Representative who can offer support and put you in touch with a local hearing/medical specialist - this will help you to find out more about your daughter's hearing loss and what options are available to her. I've sent you a private message to find out which country you are from.

Kind regards,

Leigh 

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  • 4 weeks later...
  • HearPeers Heroes
On 17/11/2017 at 5:19 AM, KBear said:

I hope this is the right place. I've been looking for info all day. Sorry this will be long. There are questions and a list of screen results at the bottom. 

My daughter (DD) will be three in March. She has sleep issues, extreme tantrums, hyperactivity, speech and social delays. She gets frustrated a lot, and doesn't like using her words. Her receptive communication is delayed. She omits the same letters from several words. I'm not sure if she hears certain words. She had two sets of tubes for high fluid, and her adenoids were taken out last month. She has failed the OAE in her L ear since May. She failed OAE in her R ear and both ears on the tympanometry (TY), when she needed tubes. 

Her follow up for the 2nd set of tubes was yesterday. She failed OAE in L ear. Passed TY on both ears. ENT said ears were clear of wax. She has not had any other mucus draining, or illness since recovering from surgery. He wants to retest in two months. He believes wax is causing it. He would not refer to audiology. Early intervention (EI) and Ped disagreed on waiting. The Ped sent a referral to audiology. 

ENT did not do a follow up screen after her first set of tubes. ENT is uncooperative with me and EI. He will not discuss screen results, or send them to EI. Only tells us pass or fail. EI's OAE does not go past two failed frequencies. So we only know that DD fails the first two. Ped only has TY.

The screen at birth was ABR. I was not present. She had it within hours of the csection. The nurse said she screamed the whole time. From what I've read, the screen may not detect high frequency hearing loss. I read screening too soon after csection birth, or while DD was screaming could give a false result. EI is trying to get those results. All I have is a paper with ABR marked pass, and OAE is crossed out. 

List of screen results:

March 2015 - hospital - ABR pass

2016 - EI and ENT - Numerous failed TY. Could not do OAE.

Sept 2016 - First tubes

May 2017 - EI - OAE: L failed. TY: both passed.

June 2017 - EI - OAE: L failed. TY: both borderline.

July 2017 - ENT - OAE: R passed. Could not do L. TY: R borderline. L failed.

Aug 2017 - Ped - TY: Both failed. 

9/1/17 - EI - OAE: L failed. TY: Both failed

9/20/17 - Ped - TY: Both failed

9/22/17 - ENT - OAE: L failed. TY: Both failed. 

11/15/17 - ENT - OAE: L failed. TY: Both passed. 

 

Questions. Why does he think it's wax if he can't see any? If it is wax, why did she pass the TY? Why is she only failing in the L ear OAE? Can ABR miss high frequency hearing loss? Especially considering she didn't have an OAE. Would the other factors affect the ABR result? 

Thank you for reading my novel. I'm worried and frustrated. Any advice is welcome.

 

Hello KBear,

 

Pardon me for not getting involved before although Mary Beth tagged me, this post escaped me...

 

As Mary Beth said, we cannot give you a valid medical advice but yes - we can clear you some question marks.

 

If your daughter did not pass the OAE, she should be tested with the ABR. However, these tests do not measure same part of the hearing pathway so it could give an additional information. Tympanometry examined the pressure in her middle ear and the mobility of the eardrum especially if she had been implanted with tubes. But, that particular issue has been resolved and her potential hearing issue does not have anything with this separate issue. 

 

I can not explain the behavior of your surgeon, but you can ask for more co-operative ENT with whom you can establish a reliable relationship.

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