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Old 11.11.2010, 23:03
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Re: hearing loss. Looking for help!

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Thanks BHBT,

I am sucking info on hearing aids like a vacuum machine.
Right now I am very frustrated because we got no clear answers why this happened, when or what can we do to reverse it. I am a scientist and I know some events are connected by causality: the cause of deafening is ... and we can do... It looks to me that the ORL doctors have a philosophical acceptance of the fact and advise to live with it. I am convinced they are very good and their conclusions are based on experience, however I know even the fight against cancer has a lot of winners. This is not the case against hearing loss. Hearing aid systems are not ways to win but ways to compensate for a loss.

Best, Mihai
The cause of the hearing loss may not ever be proven it could be from trauma, Illness, genetics whatever, and she is still very young. If it is reversible is also a variable dependant upon the cause I'm deaf, and one of my kids 'developed a hearing deficiency which lasted about 18 months, and as strangely as it appeared it cleared..

Your child however will suffer to some extent developmentally if she is not able to full participate. So whilst the Dr's, or nature does it's thing, have your daughter fitted with a hearing aid. The modern digital ones tuned to her audiogram are marvellous, and hopefully it will be short term requirement, but you never know.

Good luck
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Old 11.11.2010, 23:30
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Re: hearing loss. Looking for help!

Wow, so many of us here now! The advice you've been given is great! The acceptance is the hardest part - I too wanted to find out why it had happened to me, but at the end of the day you do have to accept it and adjust to life with reduced hearing. Your child is young so that's a huge advantage.
I agree with PapaGoose, get a hearing aid so your child doesn't miss out developmentally. However, a hearing aid does not solve the problem, it only helps. Sometimes, especially at the beginning with a new hearing aid, getting used to the sound is overwhelming, and your child may show signs of tiredness earlier than before and have headaches etc, due to the noise and also the strain of concentrating on conversations. I dislike group gatherings and restaurants for this reason. Even having a small group of people over for dinner is wearing. So, be sensitive to situations that may be uncomfortable for your child.
Get your child confident about knowing what she needs - e.g., not being shy about telling people to talk to her face, needing to sit at the front. If you can find lip-reading classes that would be great, but I'm sure with her young age she will quickly pick it up.
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  #23  
Old 12.11.2010, 12:09
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Re: hearing loss. Looking for help!

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Hi all

I am also a member of the club! I was diagnosed as being completely deaf in one ear when I was about 6 years old and this has probably been the case since birth. No known cause in my case.

It never really caused me any problems when I was younger as my good ear was "normal" (perhaps only just normal but "normal" nevertheless). My listening skills in foreign languages were on the poor side but I made up for that in other areas and I wasn't really aware of it at the time. I never had to sit on the right side of someone to hear what they were saying. The only issue was knowing the direction of sounds which never really caused a problem.

However, I started to get tinnitus when I was 21 and from about the age of 26 I was convinced that my good ear was deteriorating slowly. Nothing showed up in the hearing tests though until I was 33 when my good ear was showing high frequency loss equivalent to a 60 year old. Again, no known cause and I had always been told that this would not happen. Apparently my hearing was still not bad enough to warrant using a hearing aid.

I am now 37 and it is a slight nuisance. I tend to notice it when I am talking to someone behind a glass shield, such as when buying a ticket at the train station or similar. Sometimes I hear well and I am surprised and other times I can't seem to hear a thing. I am sure I have annoyed plenty of people. Like Traubert says, you can only say "pardon me" so many times. Acting grumpy is a lot less soul destroying than trying to explain it to someone who is never going to understand anyway.

I did go through a phase a few years ago when even restaurants were unbearable due to the noise of chattering (which is known to be over 90dB). This seems to have subsided somewhat now, unless restaurants over here are quieter than in the UK. At least over here if I don't hear someone they think my French is crap instead of just thinking I am stupid. I more or less gave up trying to learn German because it's so hard to catch what people are saying.

Coming back to the OP, I would suggest getting a copy of your daughter's audiogram so that you have a baseline to compare with in years to come. I agree that avoiding loud noise would be a good idea. Stick to the obvious like swisspea says: avoid loud music , guns and industrial noise. Instruments like violins and brass and drums are known to cause hearing loss to the player and to the poor sods sat right in front of them in the orchestra. My ENT consultants always said that the only thing to worry about is bombs going off. I would disagree with that to be honest but it puts things in perspective. Nightclubs are ridiculously loud (at least in the UK) so I would avoid those. Another thing is that smoking accelerates noise induced hearing loss.

As for treatments, unfortunately I don't know of any which would be suitable. Since she has some hearing to amplify, she may be offered a hearing aid but she will have to decide if it's worth the hassle. Your daughter will probably be fine without one (even more so as she already speaks 3 languages) and you won't want to make this a bigger part of her life than it needs to be while she is growing up. Social skills are the main thing.

One more point is that I have found several doctors in the UK advising ear syringing even though this is not advised in people having only one working ear. There is a small risk of causing irreversible damage so syringing is best avoided. The safest method of ear wax removal is by suction which is done by the ENT.

I agree with the others and grynch's joke about seating arrangements made me laugh!
thanks a lot for your insight and advice. We had (will have) some music classes with her. Now you made us rethink. It looks to me that life with such a problem has to be readjusted but it is clearly not a disability.
My daughter has no hearing in one ear so, I do not know what is to be amplified. Based on Internet search, a CROS aid may be needed.
I will mention syringing to the next appointment. It was mentioned at Kinderspital that in CH or USA some of the hearing aid stuff is not recommended. To add to the confusion it is recommended in Germany

Mihai
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Old 12.11.2010, 12:17
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Re: hearing loss. Looking for help!

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The cause of the hearing loss may not ever be proven it could be from trauma, Illness, genetics whatever, and she is still very young. If it is reversible is also a variable dependant upon the cause I'm deaf, and one of my kids 'developed a hearing deficiency which lasted about 18 months, and as strangely as it appeared it cleared..

Your child however will suffer to some extent developmentally if she is not able to full participate. So whilst the Dr's, or nature does it's thing, have your daughter fitted with a hearing aid. The modern digital ones tuned to her audiogram are marvellous, and hopefully it will be short term requirement, but you never know.

Good luck
Thanks, it is good advice.
Still, I have great faith in science and my gut feeling is telling me in 10-20 years this problems will be treatable. During my night searches I bumped into J.V. Brigande's name who is developing a genetic methodology for hair cell regeneration:
'Quo vadis hair cell regeneration' Nature Neuroscience, 2009, 12, 679-685.
From this point is a matter of time not blind faith until it will be developed into a viable treatment.

Mihai
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Old 12.11.2010, 12:23
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Re: hearing loss. Looking for help!

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Wow, so many of us here now! The advice you've been given is great! The acceptance is the hardest part - I too wanted to find out why it had happened to me, but at the end of the day you do have to accept it and adjust to life with reduced hearing. Your child is young so that's a huge advantage.
I agree with PapaGoose, get a hearing aid so your child doesn't miss out developmentally. However, a hearing aid does not solve the problem, it only helps. Sometimes, especially at the beginning with a new hearing aid, getting used to the sound is overwhelming, and your child may show signs of tiredness earlier than before and have headaches etc, due to the noise and also the strain of concentrating on conversations. I dislike group gatherings and restaurants for this reason. Even having a small group of people over for dinner is wearing. So, be sensitive to situations that may be uncomfortable for your child.
Get your child confident about knowing what she needs - e.g., not being shy about telling people to talk to her face, needing to sit at the front. If you can find lip-reading classes that would be great, but I'm sure with her young age she will quickly pick it up.
Thanks! I accept it....for a little longer but I will not stop looking for a therapy (yes a cure). There are advances in both gene and stem cell therapy. Now,it is the beginning but I'll be the duracell bunny of hope.

Mihai
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Old 12.11.2010, 13:09
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Re: hearing loss. Looking for help!

Hi All,

Count me in too. Never got to the bottom of the cause but when I was 26 I lost the high frequency hearing in my left ear and it progressed to full band-width loss > 90dB over the next 5- 8 years. I'm 37 now.

At first I found it really hard to deal with, not knowing what caused it and having previously been perfectly healthy. There is a real sense of loss which can be harder to deal with than the problem itself. The feeling about the problem is a bigger issue than the problem etc...

It affected my confidence and sociability but I now live with it just fine. Of course there are times when it's a pain in the arse, e.g. noisy bars/restaurants, parties when you can find it hard to be part of the conversational flow. I also have bad tinnitus but it's not an issue for me when I don't pay attention to it.

When all this first happpened I thought it would limit my potential in life but you know what - I've achieved a lot since this and I now see it as part of who i am. Once I realised there are a lot worse afflictions and the only limits were self-imposed I quickly bounced back (although getting to that stage probably took 5 years ).

I used to baby sit for a kid who was profoundly deaf in one ear from birth and it didn't affect him much at all because he didn't know any different. He's gone on to get a first class degree and is flying in his career - he even DJ'd at one point so his enjoyment of music wasnt an issue. In that way I think it can be harder to deal with when it happens later in life.

I would also say that if it's a sensoineural loss (cochleal nerve damage) it can't get better naturally as hair cells in the cochlear do not reproduce. I spent a lot of time trying/hoping that there was a medical solution before I realised there is a psychological solution - get on with living life to the full!

The good news is that hearing aids are getting smaller and more effective all the time. I have one but don't use it anymore as it can be a bit distracting when you have one good ear.

mlv,

try not to worry too much about your little girl, sometimes these things can't be explained (this was a shock for me), but the odds are that her good ear will remain fine as long as she looks after it in life.

I don't mean this to sound flippant either but maybe in a few years there will be a medical solution in terms of cochleal cell regeneration. Personally I am hoping to buy a good stereo system again in my retirement;-)

Diggdog
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Old 12.11.2010, 13:16
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Re: hearing loss. Looking for help!

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thanks a lot for your insight and advice. We had (will have) some music classes with her. Now you made us rethink. It looks to me that life with such a problem has to be readjusted but it is clearly not a disability.
My daughter has no hearing in one ear so, I do not know what is to be amplified. Based on Internet search, a CROS aid may be needed.
I will mention syringing to the next appointment. It was mentioned at Kinderspital that in CH or USA some of the hearing aid stuff is not recommended. To add to the confusion it is recommended in Germany

Mihai
No problem! One great thing is that many deaf people are still able to enjoy music. Most people would consider a piano to be OK for loudness. Electronic keyboards or digital pianos are good too. If your daughter really insists on playing the violin she could consider an electric one instead and keep it turned down or stand well away from the amplifier. I think the guitar would be a good instrument, acoustic or electric turned down. I just remembered that flutes are very loud.

If she has no useful hearing in the one ear then I can't see a hearing aid being much use. But the CROS sounds like a good idea as long as it doesn't make things sound even louder in her good ear.

One problem with the hearing system is that it is difficult to investigate without damaging it. If the cause is with the auditory nerve then I suspect it would be hard to treat. But there is always hope and you never know what advancements are round the corner.
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Old 12.11.2010, 13:28
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Re: hearing loss. Looking for help!

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Hi All,

Count me in too. Never got to the bottom of the cause but when I was 26 I lost the high frequency hearing in my left ear and it progressed to full band-width loss > 90dB over the next 5- 8 years. I'm 37 now.

At first I found it really hard to deal with, not knowing what caused it and having previously been perfectly healthy. There is a real sense of loss which can be harder to deal with than the problem itself. The feeling about the problem is a bigger issue than the problem etc...

It affected my confidence and sociability but I now live with it just fine. Of course there are times when it's a pain in the arse, e.g. noisy bars/restaurants, parties when you can find it hard to be part of the conversational flow. I also have bad tinnitus but it's not an issue for me when I don't pay attention to it.

When all this first happpened I thought it would limit my potential in life but you know what - I've achieved a lot since this and I now see it as part of who i am. Once I realised there are a lot worse afflictions and the only limits were self-imposed I quickly bounced back (although getting to that stage probably took 5 years ).

I used to baby sit for a kid who was profoundly deaf in one ear from birth and it didn't affect him much at all because he didn't know any different. He's gone on to get a first class degree and is flying in his career - he even DJ'd at one point so his enjoyment of music wasnt an issue. In that way I think it can be harder to deal with when it happens later in life.

I would also say that if it's a sensoineural loss (cochleal nerve damage) it can't get better naturally as hair cells in the cochlear do not reproduce. I spent a lot of time trying/hoping that there was a medical solution before I realised there is a psychological solution - get on with living life to the full!

The good news is that hearing aids are getting smaller and more effective all the time. I have one but don't use it anymore as it can be a bit distracting when you have one good ear.

mlv,

try not to worry too much about your little girl, sometimes these things can't be explained (this was a shock for me), but the odds are that her good ear will remain fine as long as she looks after it in life.

I don't mean this to sound flippant either but maybe in a few years there will be a medical solution in terms of cochleal cell regeneration. Personally I am hoping to buy a good stereo system again in my retirement;-)

Diggdog
Thanks a lot! My girl is 4 and may see things in a different way than adults. The good part is that she learned to speak (and read and write) and she sits to the right part of the IQ curve.
Nature compensates a loss with a gain.
The hair cells DO reproduce in mammals but only in the first weeks of life (we start getting old quite early in life!!) and it seems that a better understanding will eventually lead to a cure. Let me put it this way: when I'll get your stereo I'll send The Birth of Cool to you. Just let me know!
Mihai
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Old 12.11.2010, 14:33
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Re: hearing loss. Looking for help!

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Incorrect? Could be, I am no expert and can only speak from experience, a hearing loss on two of mine was diagnosed as such and a few months later both children had full hearing again.
As I said I wish this is the problem and you are correct, a good relationship to the audiologist is much better than my observations.
What ever the outcome all the best.
Slammer,
Could you please let me know what kind of hearing loss your kids had? My girl has a profound loss but we do not have a definitive answer if it is conductive or sensorineural in nature (I suspect is sensorineural). In your case it was partial or total, in one ear or both?
It is very hard for me to accept that you wake up one day with no hearing. There were no obvious causes and no pain, now there is no understanding and no direction.
Cheers, Mihai
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Old 12.11.2010, 14:44
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Re: hearing loss. Looking for help!

A little bit off-topic - have you ever heard of Evelyn Glennie?

"Scottish percussionist and composer Evelyn Glennie lost nearly all of her hearing by age 12. Rather than isolating her, it has given her a unique connection to her music."

I saw a film with her a couple of years ago. Unbelievable to see and hear her skills.
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Old 12.11.2010, 15:19
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Re: hearing loss. Looking for help!

We first noticed something was wrong when we called her from one side of her head and there was no reaction, my ex-wife is a nurse and walked around her snapping her fingers and watching where she turned her head.
It did not go away and the doctor gave her a test (this has happened to both daughters) I think the left side at first had a big hole in the hearing range. It took two weeks before the hearing was normal again.
I have just spoken to my ex if she remembered what exactly happened and she has told me that the cause was due to a previous infection killing the hairs and that it had taken some time for them to grow back.
Reference "nature Bd. 418, S. 837"
I feel sorry now that I may have gotten your hopes up too far.
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Old 12.11.2010, 18:12
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Re: hearing loss. Looking for help!

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A little bit off-topic - have you ever heard of Evelyn Glennie?

"Scottish percussionist and composer Evelyn Glennie lost nearly all of her hearing by age 12. Rather than isolating her, it has given her a unique connection to her music."

I saw a film with her a couple of years ago. Unbelievable to see and hear her skills.
Fascinating!
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Old 13.11.2010, 21:20
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Re: hearing loss. Looking for help!

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The cause of the hearing loss may not ever be proven it could be from trauma, Illness, genetics whatever, and she is still very young. If it is reversible is also a variable dependant upon the cause I'm deaf, and one of my kids 'developed a hearing deficiency which lasted about 18 months, and as strangely as it appeared it cleared..

Your child however will suffer to some extent developmentally if she is not able to full participate. So whilst the Dr's, or nature does it's thing, have your daughter fitted with a hearing aid. The modern digital ones tuned to her audiogram are marvellous, and hopefully it will be short term requirement, but you never know.

Good luck
Hi Papa Goose,
Is it to personal to ask you what kind of medical assessment you got for your child? Was it a medium or inner ear problem? Was it medium or profound hearing loss? Was the recovery sudden or incremental?
I get that our situation is not very promising based on statistical medical data of similar incidents but, if bad magic happened the good magic may happen too. This is in addition to my hope in science.
Best, Mihai
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Old 13.11.2010, 22:42
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Re: hearing loss. Looking for help!

It was a fairly rapid onset profound deafness, we noticed that she was becoming less attentive and responsive. The doctor did the normal GP checks and made the hospital referral. Numerous 'it could be's' were from generated from numerous examinations, test and audiograms, and the best advice was... use the aids (back in the days of analogue) until we can find out what the problem was... but mother nature beat them to it.

All I can say to you is it worked for us, after few weeks she was used to them, and she wore them until mother nature decided to reverse the condition. The improvement started on the left 1st as I remember but did take longer on the right, or the other way round.

Hope that helps
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Old 14.11.2010, 11:27
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Re: hearing loss. Looking for help!

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Slammer,
Could you please let me know what kind of hearing loss your kids had? My girl has a profound loss but we do not have a definitive answer if it is conductive or sensorineural in nature (I suspect is sensorineural).
If the loss is 90dB or more than it cannot be purely conductive. It is either sensorineural or mixed (ie sensorineural and conductive). You can tell that from the audiogram (do you have a copy?) and in particular the bone conduction measurements.

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.
I have just spoken to my ex if she remembered what exactly happened and she has told me that the cause was due to a previous infection killing the hairs and that it had taken some time for them to grow back.
Sorry slammer but the hair cells do not grow back once they're gone. The infection may have suppressed cell/nerve function.
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Old 14.11.2010, 16:08
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Re: hearing loss. Looking for help!

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If the loss is 90dB or more than it cannot be purely conductive. It is either sensorineural or mixed (ie sensorineural and conductive). You can tell that from the audiogram (do you have a copy?) and in particular the bone conduction measurements.



Sorry slammer but the hair cells do not grow back once they're gone. The infection may have suppressed cell/nerve function.
BHBT,

The first audiogram (2 weeks ago) showed a threshold around 70dB. The second one (5days ago) showed no answer up to 90-95dB on all frequencies and they stopped the test. After the second test (Kinderspital) we were told that the first one may have had some reception from the good ear and triggered an answer. We suspect the hearing loss occurred somewhere in the last months. She had no obvious infections and the last one we remember (9months ago) was treated with standard antibiotics (amoxiciclina which is not ototoxic). In short, we do not know if the problem is conductive, sensorineural or a mixture.
Do you have any idea of 'alternative' treatments? ...like a vitamine cure or such


my best, Mihai
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Old 14.11.2010, 16:47
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Re: hearing loss. Looking for help!

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BHBT,

The first audiogram (2 weeks ago) showed a threshold around 70dB. The second one (5days ago) showed no answer up to 90-95dB on all frequencies and they stopped the test. After the second test (Kinderspital) we were told that the first one may have had some reception from the good ear and triggered an answer. We suspect the hearing loss occurred somewhere in the last months. She had no obvious infections and the last one we remember (9months ago) was treated with standard antibiotics (amoxiciclina which is not ototoxic). In short, we do not know if the problem is conductive, sensorineural or a mixture.
Do you have any idea of 'alternative' treatments? ...like a vitamine cure or such


my best, Mihai
Without wishing to sounds funny, your child is so young that a number of factors could be the cause. I would have faith in the medic's and a little patience.2 weeks is no time at all, and certainly not time to be wondering about ground spiders testicles or anything like that
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Old 31.05.2011, 13:44
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Re: hearing loss. Looking for help!

Hi There,

I just saw this posting today. I am trained as an audiologist - currently working for a hearing aid manufacturer in Switzerland.

From the hearing test, it appears that one ear is normal and the other is anywhere from severe to profound. It appears to have changed over several tests, which to me suggests it has a conductive component. However It is most likely to be mixed (partially sensorineural (SNHL) and partially conductive), as max conductive overlay is generally around 50dB. If you child is 4 yeras old, they should be able to get clear information using bone conductor during audiometric testing to confirm SNHL or conductive hearing loss

In terms of hearing aids, it is worth trying a traditional hearing aid on the bad ear, but depending on how much of the loss is sensorineural, your child may reject the hearing aid, due to the differences between the ears. We don't only loose volume but clarity in the signal, hence it can be perceived as un-balanced when one ear is worse.

Generally children with UHL develop speech and langauge, hwoever will have more difficulties in the classroom. A device that can really help is CROS hearing system - here a hearing aid is worn on the good ear, and a microphone (trnasmitter) on the bad ear. So if sound is picked up on the bad side, it is transmitted wirelessly to the good ear, and perceived clearly. Another option for school setting is an iSense FM receiver on the good ear.

Tips that have been discussed re: seat positioning etc are all needed.

If you would like more info, please dont hesitate to ask.

Best regards,

Angela
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