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Q&A on hearing loss in children with experts in paediatric hearing care sponsored by Phonak - ANSWERS BACK

(38 Posts)
LucilleMumsnet (MNHQ) Mon 20-Jan-14 11:30:00

We're running a Q&A with Phonak, the world's leading manufacturer of hearing instruments and a team of leading experts in paediatric hearing care to answer your questions on hearing loss in children and how to provide them with the best possible care and support.

Do you have to repeat yourself regularly and are concerned it might be because your child has a hearing loss? Or has your son or daughter already been diagnosed with a hearing loss but still struggles to hear in some situations despite using hearing aids?

Whether you want to establish if there's a problem with your child's hearing, or you're keen to understand how to provide further support to a child that’s already been diagnosed with hearing loss, our experts are here to help.

This is to mark the launch of a groundbreaking new hearing device, so we've teamed up with a panel of experts that lead the way in paediatric hearing care to answer any questions you might have on children with hearing loss.

The futuristic wireless 'Roger' device, which looks like a gadget worthy of James Bond, can help those with hearing difficulties to hear and understand more, particularly speech in noisy environments and over distance. Launched by Phonak, the revolutionary Roger device promises to improve the learning and development of 45,000 youngsters in the UK who are living with hearing loss.

Our panel of leading experts:
• Claire Benton, Clinical Lead for Paediatric Audiology within Nottingham Audiology Services
• Tony Murphy, Wireless Communications Specialist at Phonak UK. Tony is the go-to guy when it comes to wireless technology. He’ll answer any technical questions about Roger and how it works
• Frank Quinn, whose 7-year-old sons were the first children to be fitted with Roger in the UK. Frank will provide first-hand experience of the technology and how it has helped aid the learning and development of his children

The Q&A is now closed but you can read the answers to all the questions in the archived Q&A

This Q&A is sponsored by Phonak.

confusedofengland Mon 20-Jan-14 19:55:59

I have a question regarding hearing. DS2 is 2.9. He has had 3 hearing tests over 8 months & at each one they have found fluid in his ears (in the springtime one they found fluid in both ears, in the summertime one just in one ear, then in the winter one in both ears again). Is this glue ear? They also said he did not comply sufficiently with the tests to show whether or not his hearing was affected, although I believe the tests they were using were too advanced for him (I would say his understanding is delayed). He also has a fairly severe speech delay, which is causing me concern.

We are going to ENT tomorrow to have him looked at again. At what point, if at all, is anything likely to be done about the fluid in his ears? And what could be done? I know it causes him discomfort because he often pulls at his ears, and I also believe it causes some hearing loss as he can repeat sounds but not words, so it seems like he is not hearing thing clearly enough to copy them.

DeWe Tue 21-Jan-14 11:13:12

My ds (age 6) is due his third set of grommets in the next couple of weeks. Glue ear was picked up very early due to mulitple (20+) ear infections in his first year.

He, despite grommets and SALT still has pronunciation problems, mostly with blending sounds and s and sh.
However I was noticing that his big sister (age 10) has very similar pronunciation problems, although not as bad. Is it likely that she, too has hearing issues?

HypodeemicNerdle Tue 21-Jan-14 20:00:31

My 9 yr old DD wears a hearing aid for a moderate hearing loss on one side. I would like to know what Roger is and how it could help my DD

mummyto2boysandagirl3 Thu 23-Jan-14 10:17:24

Ds1 (4.5) has pretty bad glue ear and moderate hearing loss both sides bcos of it. He started reception in sept but hates going he's told dh & I it's bcos the noises hurt his ears and told the head that he can't hear his teacher and finds the work really hard as he often doesn't understand what he's supposed to b doing as he's not heard the instructions properly. He is at the front of the class and gets 1 to 1 time with a ta during "lessons" is there anything we and the school can do to make school more enjoyable until he gets his grommets fitted?

TinyTwoTears Fri 24-Jan-14 10:45:05

I'd like to know the same as hypodeemic, what is Roger, how does it work? How is it different from a radio aid?
DS has bilateral sensory neural moderate hearing loss. He has great pronunciation, is is very good at phonics and reads very well but he struggles with knowing the direction of sound and finds it hard to concentrate in a group setting. He is six.
He was part of a study for radio aid use with preschoolers but freaked out when the radio aid was switched on. We haven't tried on since.
How would Roger change my son's experience of sound?

floradoors Fri 24-Jan-14 12:57:22

My ds (10) has mild hearing loss in his left ear which he's had since birth. Although we've had several consultations so far he hasn't needed a hearing aid but it did have an affect on his speech development when he was younger, although he's fine now. His primary school have been fantastic - he's always sat at the front of the class and the teachers have always been instructed to speak slowly as he does lip read to help compensate for his hearing problems. He's going up to secondary school in September. It's a big school and although we'll obviously discuss with them about his hearing, its going to be difficult to make sure all the different teachers help him out (by sitting him at front of class etc.) Also I think the school will be much noisier than his current school. He's always been keen to avoid hearing aids but I'd be interested to hear more about the wireless Roger device and whether he'd be eligible for one.

zipzap Fri 24-Jan-14 13:02:38

Both my dc (8 & 5) can hear but I worry about how well they are hearing things as they both have some problems pronouncing words correctly - it's becoming more evident from ds1's spellings that there are lots of things that he's not only spelling them wrong, but if you read them phonically, they are phonically wrong too. Then when you get him to say the words he's supposed to be spelling, he's spelt them phonically correctly for the way he is saying them, which makes me wonder if this is how he is hearing them... (for example, which led to an interesting conversation on the way to school this morning when he wanted an explanation for 'bawdy' - but was actually talking about 4-D confused)

So I guess my question is, if I know my children can hear (whisper 'who wants a biscuit' from the other side of the house and they are there), is there any way to monitor the quality of what they are hearing when there are potential indicators (ie the poor pronunciation of certain sounds) that there might be some problems with the hearing?

(I guess if it were eyesight that you were talking about, then I know my dc aren't blind, and that they have reasonable sight as they can see words on a page to read them. But it's knowing if they've got the equivalent of mild long or short sightedness or a bit of a squint... It's easy enough to take the dc to the opticians to get their eyes checked but you don't ever think of doing the equivalent for getting their hearing checked and it's not something you want to drag them to the doctor's for if there isn't a major problem.)

cathpip Fri 24-Jan-14 14:00:16

My ds has a mild/moderate loss and is aided, he is in reception and uses radio aids which are superb "I can hear the teacher mummy, from across the room"!. How is Roger different to a radio aid? Could it eventually replace radio aids? How would a child be deemed eligible? At the moment my sons radio aids are provided by the local authority, and hearing aids by the NHS, how would Roger be issued or would you have to fund it yourself?

MissBetseyTrotwood Fri 24-Jan-14 14:26:45

My DS has profound hearing loss in his left ear and normal hearing in his right. He uses a soundfield system at school but is not otherwise aided.

He has had a speech and language delay and is very, very slowly learning to read. He's 5 but does struggle with phonics and hates school as he's starting to struggle to maintain friendships as he finds hearing the game in the playground difficult.

He also has vestibular hypofunction, something that I have struggled to find out much about since his diagnosis, even on the NDCS website. This has also impaired his ability to fit in as he can't really run like others his age.

So my questions are:

Should his hearing be aided?
If so, what would his options be?
Is there anywhere I can find out more about vestibular hypofunction?
What is Roger? Could it help a child like DS?

Thanks.

Paintyfingers Fri 24-Jan-14 15:34:23

I am very keen to know more. DS had 50% hearing loss due to glue ear we believe for a whole year hmm

speech delay now although grommets have given him normal hearing. Plus very flat time and limited vocabulary. Struggles to say p, m or b hmm

I'm worried about needing future ops and the waiting lists for those.

Pineapple10 Fri 24-Jan-14 17:36:41

Hi - I would love to hear more info about the wireless Roger aid and whether it could benefit my child 14 who has moderate 'cookie' loss in one ear (other ear is ok) and wears an aid which he is increasingly self conscious about. Thanks

SweetPeaPods Fri 24-Jan-14 21:27:15

My nephew currently wears an nhs hearing aid. How does it compare to other nhs aids, and will it be available to all hospitals? My SiL finds that different hospitals issue different hearing aids, so she is not sure what is better, or if it just goes on price? She has read up about blue tooth devices for example but the hospital won't issue them because he only wears 1 not 2. Sorry that might be more than one question. Thank you.

KepekCrumbs Fri 24-Jan-14 22:01:30

Could it help adults with hearing loss too? I struggle with my hearing aids in my job sometimes. I get so tired with all the hard work listening is for me. I have to concentrate so much to hear.

bordellosboheme Sat 25-Jan-14 01:17:49

My son has moderate bilateral high frequency hearing loss....

1) what are the main causes?
2) how can I best help him to develop speech (he is 2)?
3) how is it likely to affect him socially?

keelo123 Sat 25-Jan-14 03:36:15

We are desperate for answers but more desperate for help from someone that specialises in hearing loss but for some reason it's seeming totally impossible. I have hearing loss myself and have prescribed l&r hearing aids which add to the concern for my 8yr old daughters hearing. She has definitely got a rather big loss and she did start out having tests which confirmed it- BUT- we moved house and any appointments keep getting sent to our old address. Despite changing this by ringing the relevant people (on many occasions) and my gp putting it in writing and other ways of informing, the address on my daughters records still have not been updated and seems as of they never will be!! She's really suffering and it's extremely unfair to her. She's developed a stutter over it which comes and goes because she's feeling uncomfortable in the knowledge that people are talking to her and she has to hope that she gives an reply that fits in with what has been said. It's really frustrating that she can't even hear her family even when we are raising our voices. I can't seem to find help from anyone and can't find anywhere to turn. I feel like my daughter is being neglected and I can't do anything thing about it!! This terrible issue has/is causing other problems among the whole family alongside! WE are desperate. I would absolutely LOVE for someone who can help, to get in contact- I need someone to save my little girl from going downhill with education and her confidence! If anyone can help us then please please do!!

keelo123 Sat 25-Jan-14 03:40:38

Referring to my last post- if anyone can help us then please email me either through mumsnet or the following email address:
keelos_cloud@me.com

keelo123 Sat 25-Jan-14 03:40:54

Referring to my last post- if anyone can help us then please email me either through mumsnet or the following email address:
keelos_cloud@me.com

Paintyfingers Sat 25-Jan-14 07:36:46

Keelos,I have had similar with appointments for a different chronic condition I have myself.

If you didn't move too long ago you may still be able to get the post office to do a mail redirect, so the post comes to the new place.

If these are hospital appointment letters going astray you can call PALS at that hospital who are there to help patients and explain the situation with the letters to them. They should be able to sort it out.

Paintyfingers Sat 25-Jan-14 07:40:31
Parsnipcake Sat 25-Jan-14 08:28:12

I would like to see hearing aids have a gps added in if it was possible. My daughter is forever losing hers, and won't tolerate the clips to hold them in place. If there was some sort of homing device ( like on iPhones) it would be fabulous!

scarfaceace Sat 25-Jan-14 13:51:20

Could the Roger device help somebody who is completely deaf in one ear and who has no nerve responses at all? (due to a childhood ear infection)

BrigitBigKnickers Sat 25-Jan-14 19:53:24

Hi- ToD here- we have the Dynamic FM MLXi receivers with Inspiro transmitters and Digimaster 5000 SF systems in our classes.

How is the Roger system different?

Queenmarigold Sat 25-Jan-14 21:00:50

My daughter has high frequency loss due to carboplatin. She finds it impossible to hear when there is background noise. I would love to hear more about your hearing aid.
Can you also advise, is moderate hf loss a candidate for hidden aids- if find a way to pay privately in future; bullying worried me

Keelo123 please contact and became a member of the National Deaf Childrens Society (in fact a good piece of advice for everyone here). They have an advice service, legal and support services too. They also run weekend breaks (largely free of charge) for families and they will take groups of deaf childrenyou on their own. They have been fantastic over the last few years with us and my DS. The children get support and advice as well as meeting other deaf children, it really is a fantastic service!

I would like to know some more details of this Roger, is he suitable with all HA's, what about CI's? And how does it differ from a normal radio aid? There is very little actual information in the OP about exactly what this is and how it will work to improve the hearing experience.

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