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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.

RachelMumsnet (MNHQ) Fri 21-Feb-14 16:57:29

Phonak have asked us to post the following message following the recent Q&A:

Thanks for all your questions. We hope the answers provided by Phonak’s experts have been helpful. If you’re still keen to find out more about the Roger system and hearing loss in general, you can do so by visiting www.hearingadvisor.co.uk

deakymom Sun 16-Feb-14 00:18:02

hearing loss after an ear infection is our problem he still has a little gunk in there and all we get is eh? eh? whats that? mmm? i would love to have something done about this

LucilleMumsnet (MNHQ) Thu 06-Feb-14 15:21:46

You can now see the expert answers, as well as plenty of information about Roger, here.

LucilleMumsnet (MNHQ) Mon 27-Jan-14 10:53:38

This Q&A is now closed and we've sent your questions over to the experts. We'll post up the answers next week, thanks to everyone who took part.

ShoeWhore Sun 26-Jan-14 22:38:27

Hmm not much info in the OP. My son had glue ear and I am now told may have permanent mild hearing loss - my niece has just been told the same thing. I'd like to know when this new aid might be appropriate and if it could help him in the longer term if he needs it. at the moment he is happy wearing his hearing aid but he got upset at a concert last week as he said it was too loud and hurting his ears. He's 6.

Paintyfingers Sun 26-Jan-14 12:55:39

Apparently their talk forums are fab too, though I've never used them myself.

Paintyfingers Sun 26-Jan-14 12:55:04

Ndcs are amazing and the advice and support for me when DS had glue ear was invaluable. Their lovely paed audiologist called me back and answered all my questions and they provided support when a pre school setting I called made a few ill informed comments about deaf children hmm

isitme1 Sun 26-Jan-14 10:27:20

Thank you very much for that will check it out x

here is a link to them.

It's the National Deaf Children's Society. It's a charity that does exactly what it says on the tin smile

isitme1 Sun 26-Jan-14 09:42:54

Can I ask whats ndcs? blush

Itisme please see my NDCS advice, they have all sorts of support for newly identified deafness, including weekend workshops. They have been a godsend for my family. Good luck.

isitme1 Sun 26-Jan-14 09:00:09

My niece has recently been diagnosed with some type of hearing loss. They arent sure if shes fully deaf now or if she has some hearing remaining in one ear. 1 ear is fully gone.
Shes under a year old and her newborn hearing was fine. We are waiting for her to see the specialists.

Whats the best way we can help her live a 'normal' life? Where do we start with all of this as nothing has been discussed. Will this device you have mentioned be available to her by nhs? Thank you

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.

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

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?

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)

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!

Paintyfingers Sat 25-Jan-14 07:40:31
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.

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

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 03:36:15

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!!

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?

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.

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