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7 year old daughter has cookie bite hearing loss

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Hi all,

I have stumbled upon this forum while looking into sensorineural (cookie bite) hearing loss. My 7 year old daughter failed her hearing tests at school (2 x) so we got a full hearing test which demonstrated mild mid-range hearing loss which I gather fits the cookie bite profile. It is a bit stunning given that we have never noticed any issues with her hearing. And obviously very stressful. It sounds like it is likely congenital. It is hard to find a lot of info on this kind of hearing loss profile in children. I am left with a lot of questions. Is it likely to worsen? How quickly will it progress? Curious if anyone here has had a similar experience personally or with their kids. If so, how have things progressed?

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Well the first thing to do is not panic. Next if you can post your daughters latest hearing test that would help. From my own experience my loss was first noticed in the third grade hearing test. Nobody in my family noticed anything. Started wearing first set of hearing aids in my mid 20s. Don’t know who made the congenital diagnosis but that usually implies her loss will get worse as she gets older. But there are options available and at her age the future looks brighter for aids and even cochlear implants, if necessary. You should probably get her tested every year. Usually with a genetic loss the won’t show much decline from year to year but when you put the test results next to each other you may see a steady decline over a longer time frame. But her current audiogram would be very helpful to decide if she needs help right now. I know you feel bad. It’s your daughter. But don’t panic. We’re here to help help. Take your time. Don’t let anyone try to force you to get aids. There are a lot of people out there looking to make a sale. And remember. Aids don’t fix hearing loss. They try to help. And prepare yourself for sticker shock. Keep in mind everyone’s loss is different and there’s no such thing as one aid fits all losses. And how she hears through a particular aid will be unique to her.

Thank you. That is really kind and helpful of you to share. I will try to attach her here.

I did panic a little bit, although I also realize that she is at the mild end and things can obviously be more difficult than what she has. The recommendation from the audiologist was not to try aids at this time since she isn’t demonstrating any issues. I really was wondering how likely it was to progress since as you point out it seems like it tends to get worse. There isn’t a formal congenital diagnosis either, but she didn’t have any obstructions and so I believe the audiologist said it is often something a person is born with, and that is also what I have read so far (this test was only yesterday!).

Thanks again for your insight. It helps to know she may not need aids etc. until later in her life - it is just tough to see children wrestle with these issues. She is obviously worried about it now.

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Her hearing still looks like it is within normal ranges, only a slight loss. The best thing to do going forward is to ensure she has yearly hearing test like they recommended on the letter and if it then worsens (hopefully not), it can be treated with hearing aids so she can continue to hear like she “normally” would and would really enable her to continue to develop speech discrimination and language… something I wish I had done many years ago but vanity and stupidity came first! But she will be OK, honestly. I had hearing problems pretty much all my life and managed fine. I hope I am right and if I am wrong, knowledgable people on here can correct me! Take care :slight_smile:

I had a high frequency hearing loss that was found when I entered kindergarten along with the need for glasses. I ended up being a high myopia. This all happened in 1958, so hearing aids were very different than today. My parents got me glasses, but held off on the hearing aids. Every year I would fail the hearing test and not get hearing aids. Looking back I think it was the correct decision, as I learned to be an expert lip reader. Now at age 70 I am doing the hearing aid route. My audio test showed the high frequency loss and a slight low frequency loss which is tied to me wanting to get hearing aids for normal voice communication. I am at 60db and falling at 1000hz and above. So, from my experience I learned to over come the hearing loss in different ways as I grew up. Now I was terrible in English and mangle words that drive my wife crazy, but I chock that up to where I grew up. Everyone talked like that where I lived. And for every grandchild that was born, I always was a little worried when they did the infant hearing test at the hospital, as I thought maybe this is a hereditary thing. But they all passed.

So, my advice would be to monitor this every year at the start of school and see if anything changed. Glasses correct your vision very well, hearing aids work but they cannot match natural hearing. In other words, her loss is not severe at this point.

How is she doing in school? How is she doing in background noise?

Given a new diagnosis I might retest at 6 months in a child, but I’m conservative. Annual is probably fine. But take this time to ask around and find out who the best pediatric audiologist in your area is. Sources of information on that might be the educational audiologist or itinerant teacher of the deaf and hard of hearing connected with the school, might be parents of other children in the area with hearing loss, might be your family doctor.

We do genetic testing for newly diagnosed children where I am, but I know it’s not available in all areas. You could ask her doctor. It’s not necessary, but some families like to know what to expect from the hearing loss, which knowing the genetics sometimes helps (though etiology cannot always be identified). If a known genetic cause can be identified it sometimes also helps to identify other things that sould perhaps be monitored. It may suggest whether or not the loss will be progressive. For example, genetics on a recently diagnosed child were able to say that her type of loss appeared between the ages of 4 and 10 and that her siblings had a 50% chance of the same loss but not after the age of 10. So, typically not information that affects treatment, but information that can be helpful.

But you are very early. You’ve done the right thing to follow-up and get her tested, and now she will not be missed and will get timely intervention when she needs it. That’s excellent.

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