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Question about deafness

(10 Posts)
rebl Wed 13-Jul-11 09:53:13

DS was dx at birth with a mod / severe hearing loss. His hearing tests always give the same responses. Thresholds are in the region of 60 - 80db across the board. None better than 60db. But why then do we still think there are times he can hear us and other noises (he's 5 btw) without hearing aids in? Some examples:
When he was a baby he was sleeping in his cot. I went into the room and saw the lid was up on the baby wipe dispenser. Not wanting them to dry out I pushed the lid down and it clicked shut. With the click he startled.
This morning he had his back to me and was facing the wall. No pictures / mirrors or anything that could reflect anything to him. I said quietly "Go to your room and play". He repeated back "Yes, I'll go and play in my room."
He says he can hear dh and I talking in the evening when he's lying in bed and sometimes even complains about us talking downstairs.
He says that without his hearing aids he can hear me and dh quite easily. When asked what else he can hear without his aids he says the cats and sometimes the birds.

We get these things about once or twice a week when he really makes us wonder if they've got his dx right. But he's been tested so many times I find it hard to believe they've got it wrong. But it all doesn't make sense.

Part of his hearing problems seems to be an oversensitivity to background noise and loud noises. We've been told he's much more sensitive to background noise than the average hearing aid user. We've also been told that he's still learning to distingish environmental sounds that given his loss and excellent speech they would have expected him to have learnt by now. For example he still questions the noise the fridge makes everytime it kicks in.

Is there anyone who could explain this discrepancy between his tests and occasional rl situations?

Claw3 Wed 13-Jul-11 10:33:09

I was told that my ds was partially deaf, when he failed one developmental hearing test, after another, upon further testing where they send sound into the ear and it rebounds (sorry a long time ago i cant remember the name of it) he failed that too. I even started to learn sign language.

He did pass a hearing test about 3/4 years later, after failing numerous others.

He totally ignored the tests when given, at one point the tester was shouting his name and he gave no response at all.

Ds has lots of sensory issues and like your ds is oversensitive to background noises, certain pitch loud noises.

Seems to me that in order for ds to focus, he has to block out noise. Also in situations where he senses are overwhelmed, he will not respond when spoken to for example a car ride, cinema.

OT explained that ds is only able to use one sensory channel at a time, so for example if there is a lot going on visually, he cannot use his hearing etc, etc

Ive tried to explain the best i know how, does that make any sense?!

TheNinjaGooseIsOnAMission Wed 13-Jul-11 12:07:40

what sort of tests has he had rebl, have they all been ones he has to respond to? You can ask for an abr to be done under sedation or while asleep which would take any of it being whether he is responding or not out of the question. Have you thought about something like auditory processing? Might be worth giving the ndcs a ring and asking one of their audiologists what they think. I also agree with claw that sensory issues can play a huge part, dd3 won't wear her hearing aids in the supermarket, the noise is just too much for her.

NeonCupcakes Wed 13-Jul-11 12:30:36

Agree with Ninja. Demand Ask for an ABR test to be done as VRA tests can be unreliable. Also worth looking into sensory issues (referral to Occupational Therapy) and, depending on the ABR results, auditory processing disorder. NDCS helpline are marvellous and the Parent Place forum on their website has some extremely knowledgeable posters.

Could also be a fluctuating hearing loss - more uncommon but possible.

DD "passed" 5 VRA tests before being diagnosed profoundly deaf at age 4.5, so you'll understand my scepticism about their accuracy. ABR was what finally proved I wasn't going mad!

MayorNaze Wed 13-Jul-11 12:46:18

it will be to do with the sound frequency of the noises he hears, like radio waves?? ds is borderline profoundly deaf, he can hear whistling and birdsong depending on the pitch of the sound.

also the other points these knowledgable ladies have made ie concentration level, filtering out other sounds, paying attention (!), also other factors such as wax in the ears, maybe even glue ear? ds's condition is static but he definitely seems "deafer" on some days.

a classic from him:

"ds, are you hearing aids working ok, i seem to be repeating myself more than usual?"
"oh yeah they're fine, i'm just not listening to you" angry

he is 12 so i expect much more of this as he gets older angrygrin

do keep asking the professionals questions, all the time, even if you think you are repeating yourself/sounding stupid - DO IT!! ask them to explain his audiogram to you every single time you go - any professional worth their oats will be happy to do this.

am posting in a hurry but pls do post again if you want any tips, i am usually much more coherent than this...

NeonCupcakes Wed 13-Jul-11 13:12:36

grin Mayor. I get that from DD too.

But she's also just wising up to the fact that if she says "I didn't hear you" rather than "I wasn't listening", I can't really give her into trouble.

The concentration/paying attention can be a huge factor. Pre-diagnosis, DD lipread, picked up peripheral visual cues (shadows etc), responded to vibrations etc so much so that even the professionals were unsure if she was hearing or not (despite her having no speech at all at age 4).

dolfrog Wed 13-Jul-11 14:39:45

There are many issues related to hearing, and how the brain processes what we hear.
Sensitivity to sound is Hyperacusis
Having a listening disability is Auditory Processing Disorder (APD)
There is more related research paper information at CiteULike Group: Audiology and Auditory Processing Disorder - library 330 articles

rebl Wed 13-Jul-11 20:21:23

Ninja He's had ABR when a baby a couple of times. Consistant 70 - 80db across all frequencies both ears. Since around 12months he's done ones where he has to respond. Again consistant responses in the 60 - 80 db both ears.

Neon If it was a flucuating hearing loss would we expect to have picked up 1 good day so to speak over the last 5 years during tests?

I think I'll call NDCS or post over on their forum and ask. Its really bothering me and dh.

hatchypom Thu 14-Jul-11 18:26:30

You need to talk to a specialist paed audiologist (a doctor) not just an audiological scientist. Until you said good abrs I would have gone for auditory neuropathy spectrum, as these kiddies do have fluctuating loss. Abr and oae are the standard tests that do not need a cooperative child (and therefore can not be learnt or tricked) but they do need a skilled interpreter. They consistent of electrodes (on the head) for an abr or the oae is essentially an echo test to see if the ear before you get to the cochlear is working. Ultimately, it boils down to the impact on accessing the world, hearing aids, however sophisticated always have their limitations.

NeonCupcakes Tue 19-Jul-11 15:49:51

rebl, wanted to come back and see how you were doing. I see he's had an ABR - as far as I know they're pretty accurate.

You've had a lot of good advice here (dolfrog/hatchypom, I could have done with you 6 years ago!), but keep pushing and questioning until you get some answers you're happy with.

Good luck.

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