Audiology behavioural test accuracy - 2yr old said to have high frequency hearing loss

[PeanutButterCrumpets]

My 2.3 year old DD has had three Audiology tests doing the Visual Re-inforcement based testing where a single tone plays and DD is supposed to turn her head at a lit-up puppet display. Two out of three occasions DD did not turn her head at the quieter tones and so Audiology are diagnosing her with a minor high frequency hearing loss. I feel DD zones out quickly and doesn't bother responding to the quieter sounds. She displays a keen sense of hearing at home at the most subtle sounds (low and high freq) and has never given me reason to think there is anything wrong with her hearing. So I have a dilemma on my hands. Do I trust a behavioural-based test and allow them to give her a hearing aid and therefore possibly create a dependency on something she might not need - or do I wait a year when she can speak and tell me herself? Audiology feel thats too long to wait. Can't do an ABR as that means sedating her which we're not considering right now. Is a behavioural test conclusive? Does it beat my own observation of her? I realise i'm challenging a professional opinion but it's because it's based on a behavioural result i'm questioning it. Thank you so much for any advice or opinions!!

Hi. My son is deaf and so we have had lots of these tests. You say your daughter didn't pass 2 out of 3,so she did pass one of them at all frequencies?
I could be wrong but I always thought they took the best results they could get? So if she has had normal hearing levels on a test then your gut is probably right?
Is her speech where they expect for her age? Does she have problems with high frequency speech sounds such as 'shh' or 'th'?

Also, we did a sedated ABR earlier this year and it was very straightforward, but I appreciate you may have your concerns about it

Hi @luckyleads and thank you - yes I am to believe she has shown success at hearing all frequencies previously. DD isn't speaking yet but has been late in every developmental milestone by about a year. Once she gets there she has no problems or wobbles with it and is otherwise fully functional and on the ball and displays great comprehension to what we say to her. She never indicates she hasn't me or my husband and I can whisper instructions super softly at her and she will understand and go and do it. She will also watch her ipad on a very quiet volume and still gesture to the song playing at the right cues whilst looking at me and not copying what she sees on the screen. You have given me food for thought and something to ask at the next appointment that she has passed previously. I feel they'll say her hearing has 'regressed' . I need to ask them to help convince me as I remain un-convinced but at the same time if DD needs hearing support then she needs it.

@luckyleeds That's very useful to know, thanks. I wish we could do the sedated ABR. At birth she had respiratory issues and putting her to sleep is risky - i'm too scared to go through with it. Maybe its something we'll speak more in depth about with the paed x

Being able to hear whispers or iPad and low volume doesn't mean she doesn't have a high frequency hearing loss. I have a high frequency hearing loss, and when people are speaking I know they are speaking but it can be hard to distinguish what they are saying. And especially with any background noise, they sound like they are talking from underwater. Mine wasn't picked up until school. Trust the professionals (or get a proper test done with sedation if you still aren't sure). By disbelieving the professionals and not doing a more precise test either you're just hurting your DDs development.

By the way what is so bad about having a hearing aid?

"possibly create a dependency on something she might not need"

That makes zero sense. Hearing aids don't damage your hearing. That's like saying turning on the light when reading will make you too dependent on light, you should have to try to read in semi darkness. Why not just let her have something that can help her? I can understand if they would cost a lot of money and you are not sure if you can afford it (in Australia hearing aids for under 26 years old and seniors are free, don't know about UK), but if not, you shouldn't withhold something from your daughter that can help her.

My son's hearing aids had to retuned when his glue ear eventually cleared up, and when they were programmed too strongly during that period he couldn't tolerate them. If you trial the hearing aids and your daughter doesn't have a hearing loss then she might not tolerate them and it might help build a better picture of what she does or doesn't hear. Or she might love them and they will help!

@TigerQuoll Thank you, I appreciate your point of view and I must be clear I absolutely want DD to have it if she needs it, but I want to be sure she needs it, as the behavioural test didn't feel conclusive enough. That was interesting to hear your personal experience of having a high frequency hearing loss, thank you, it's very useful information x

@luckyleeds That is super interesting to hear thank you! Yes, we are hoping that we can verify the 'doesn't know what to do with quiet sound' suspicion by re-testing her after having the hearing aids fitted and tuned. If she still doesn't respond to the quiet sounds, then even with reasonable tuning, it's highly likely she just is zoning out, losing focus or doesn't know what to do with the quiet sounds as initially suspected. So interesting to hear that if they don't need them (ie: its too loud), they will not tolerate them. This is excellent information!!

How did you separate your DS not wanting to keep it in his ears from not tolerating it? I'm sure DD will pull them out constantly and I won't know if its because its too loud or because she just doesn't like having something in her ear.

DS was just generally a good HA user. He took a couple of weeks to get used to them initially, but after that he clearly realised the benefit of them and only pulled them out if he was teething or they weren't tuned correctly I.e. too loud.
I'm in a slightly different to you though because he's moderate to profound, so really doesn't hear much when not wearing them whereas your DS will be used to hearing fairly well on her own. Your audiologists will guide you. They won't want her to have HAs if they're unnecessary any more than you do! A few months in trial won't do her any harm and you should know fairly quickly if they're too loud. Good luck!

Thank you so much @luckyleeds, you have been an amazing help with great food for thought. We will be going tomorrow (Monday) for her appointment to have them fitted and will re-test her as soon as they deem her ready. Thank you so much!

You're very welcome! Hope tomorrow goes well. You can get little pictures in the moulds btw, things like Ana and Elsa from frozen,just ask! Lots of fun.
A last thought is whether you might want to teach your daughter some basic BSL signs if she's not quite talking yet. My (hearing) daughter loved learning the signs around 2 years old, she thought it was great, and also helps to communicate with her brother. But in your case, if you teach her the sign for 'noisy' etc then it might help her to tell you if they're too loud. There's a good app called 'sign BSL'where you just type in the word you need and it shows you a video of the sign. A life saver!

@luckyleeds Ah fab re: pictures! And yes spot on we are absolutely introducing BSL - we have someone coming to do a home workshop with us (safely!) but the app sounds great and i'm absolutely going to download that. DD will love seeing it on her ipad and copying the actions haha. My husband showed me an app called Audacity where you can hear what it sounds like when someone has a a partial high frequency hearing loss and it's made everything so much clearer for me in terms of what she might be hearing. She absolutely needs to be hearing clearly. Together with your advice and hearing about your experiences I feel so much lighter and far less doubtful about the diagnosis. So many thank you's. I will update this post and let you know how we get on x

My son has high frequency hearing loss diagnosed at birth. The play based tests are not 100 percent but fairly accurate.
Was your baby in the nicu at any point? Some neonatal drugs such as gentimicin can cause high frequency hearing loss.

Ds had very poor hearing due to glue ear from when he was a baby. At times his hearing was down to 10% of the baseline.

I wouldn't have told without the tests. He could hear, and respond to me, as far as I could tell. He had quite a good vocabulary with speech fine.

ENT pointed out he was lipreading. I had no idea. I thought it was just a rather cute trail he had of turning my face towards him. I didn't realise that he liked to be carried so his ear was near my mouth. I didn't realise that he'd learnt so many cues to compensate for the hearing loss.

@BurningRose Thank you, over the last few days and seeking a second opinion i've come around to accepting the play based testing - they have a ton of data to reflect on and i'm told the failure rate is very low. DD was in NICU at birth for pulmonary hypertension and had a type of gentimicin but we're told it was well below the dose that could cause hearing damage.

@Witchend That is incredible - I had to show your post to my DH! And it didn't affect his speech?! Wow that's great to hear. DD is a super late developer in all areas and so we assume her speech will come just as late but good to know if they want to speak they will and that's super heartening to know your DS's speech developed just fine. We had our HA moulds today and will be going back in a couple of weeks to get them fitted. Not sure if it should be but this is a big shift in thinking for me. Although I am excited to see the look on her face when she starts to hear more

@PeanutButterCrumpets

Ds had grommets and it wasn't the magic cure some people have. But there were a couple of little things that stood out for me.
One time was just after his second set of grommets when he was running through leaves and he turned to me and said "the leaves didn't crunch last year" and I realised that was the difference in his hearing.
And after his third set of grommets where he came home from school with the big news that he'd discovered that "sh" and "ch" made different noises.

He did have speech therapy for a few sessions, just on a few sounds. I'm not sure how much it helped him, but he did like some of the games they had. :D

He's 13yo now, and definitely over bad glue ear, but there's a few things I notice when they're a bit glued up. One is volume he listens to things, the other is he starts using subtitles more.

Even at his worst he could hear the sound of a chocolate bar being carefully opened.

Aw @Witchend you sound so lovely! haha kids seem to have an innate sense for chocolate bars and sweetie wrappers being opened I honestly teared up at the 'leaves didn't crunch last year' bit. I feel awful at how much I questioned the audiologists diagnosis - I really questioned it and at todays hearing assessment it became so clear - DD heard the most subtle low frequency sounds playing (even I barely heard them) and DD then didn't even twitch at the much louder high frequency sounds. I thought, "ok, I now agree". Btw i'm so sorry I don't actually know what Grommets are - did your DS have hearing aids as well as those? Did he accept them ok and was he ok throughout school with them?

Glad it went well today! And glad you have found peace with the diagnosis. I really hope the hearing aids help your DD to hear more clearly

Unfortunately gentimicin can be toxic to the ear hairs, even at a lower frequency. Its a clear marker for high frequency hearing loss.

Glad you have come to terms with it. It took me a while too. There is loads of help and support out there. Good luck.