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Who else has children with hearing aids?

(41 Posts)
geogteach Fri 28-Jan-05 19:59:30

Noticed a couple of threads on hearing loss recently. DS is recently diagnosed with moderate loss at 31/2 and has just got aids. Interested so I know who to ask when I have my next mold doesn't fit / battery is flat / need to cut tubing crisis!

stringbean Fri 28-Jan-05 22:01:52

Hi geogteach. My dd has had hearing aids for about 7 weeks now (she's 18 weeks old) so we're at the stage of grappling with toupee tape to keep them on and taking her to the audiologist every couple of weeks for new moulds. Not sure I can be of much help as we're very much in the learning stages too, but do feel free to ask, it's good to know someone else out there is going through the same thing. How are you getting on?

geekgrrl Sat 29-Jan-05 06:44:44

hi geogteach, my 3.5 year old dd has had hearing aids for over a year now - you've probably seen my thread below, she's also getting glasses now. She's been needing hearing aids for over two years but we were with a rubbish audiology dept who couldn't get the molds right (she has Down's syndrome and very little ears). Are your ds's aids digital or analogue? Dd has digital ones and they're great. She wears them all the time without problems. How is your ds getting on?

Peckarollover Sat 29-Jan-05 08:06:25

Can I ask a question? My DS is at very early stage of getting a hearing problem diagnosed. Dont even konw what the problem is yet or how severe but just wondered the history with your kids - what is actually wrong? Will the hearing aid give them good hearing back?

geekgrrl Sat 29-Jan-05 18:09:33

hiya PR, my dd has, due to her having DS, abnormally tiny ear canals & eustachian tubes and as a result chronic severe glue ear. She's had grommets once but it was a tricky procedure, her ear canals are like slits and have a 90 degree kink in them, grommets didn't help and the surgeon said he wouldn't do it again until she's at least 7.
With glue ear and other conductive loss problems hearing aids work really well, as conductive loss just muffles the sound. With dd having digital aids she gets great sound quality and can hear really well now.
Inner ear problems (sensorineural loss - where the hearing nerve is affected) can be trickier to rectify. Hearing aids can help immensely but the person does not necessarily end up with perfect hearing, imagine it like a radio that's not properly tuned into a station.
Audiologist check whether the loss is conductive or sensorineural by putting a loud speaker against the skull right behind the ear, thus circumventing the middle ear. Children with conductive loss will pass this test but fail other standard listening tests.
My daughter was suspected to have hearing loss as it is so common with DS. She had an auditory brainstem response test under GA (they put headphones on baby and stick electrodes to the scalp to measure the brain response to clicks) when she was 1.5 years old which showed that she has moderate/severe loss.
Check out the NCDS website they've got a lot of info on there.

Hope this helps.

biglips Sat 29-Jan-05 18:20:43

geog - you need to go back where you got your hearing aids from for the moulds, batteries etc. just to let everyone know that if its a weekend and you didnt realised that you've ran out of batteries, you can buy them from boots (only boots sells them) for 5 for £2.50 - 3.50 (ive done it loads of times as im deaf), also asked the audiologist where is your local clinic to get free batteries so instead of going all the way to hossy.

geogteach Sat 29-Jan-05 19:17:43

Basically getting on fine, DS has accepted the aids well but has grown out of first set of molds so whistling is a problem while we are waiting for the new ones - seems to bother us more than him. He has digital aids. History is some glue ear but also a neural loss, his loss is severe at high frequencies but moderate overall. This will not improve and probably not get worse but won't gaurentee that bit . He has a teacher of the deaf and has had one speech assessment but as speech is relatively clear SALT is holding off for a bit to see if aids help him get the sounds he is missing. Aids have definately improved his hearing but it is by no means perfect, current issue is he can't hear the computer which he finds frustrating as he can't read yet. Last weekend we went to a party organised by the Surrey deaf children's society which was great as DS had never seen anyone else with a hearing aid before, so now he realises he is not the only one.

stringbean Sat 29-Jan-05 20:21:22

Geogteach, not sure if you have to use toupee tape to stick the hearing aids on behind your ds's ears (we do this with dd, but she's much smaller), but we've also found that a little square of tape inside the mould at the top helps keep it in the ear and cuts down on whistling when the moulds are getting a bit on the small side and you're waiting for new ones. Dd has sensori neural loss plus glue ear too - won't bore you with the details as its all on the 'newborn with hearing loss' thread.

We see a teacher of the deaf too, who is brilliant. At the last visit I got a bit upset about dd's hearing, and the teacher later dropped into the conversation the fact that her youngest son is profoundly deaf and has a cochlear implant. Was touched that she disclosed this when she clearly didn't have to; its just comforting to know that other people know what you're going through .

Cristina7 Mon 31-Jan-05 07:36:34

Hi all. I've just registered with this site so I'll be catching up on the reading here. I have a son who is 5 and is profoundly deaf. He wears Phonak Supero 413. He has good speech and understanding (but terrible in noisy situations, we hope the new digitals will help him with this). He attends a good mainstream school and wears a radio aid there. He reads very well (I taught him using the phonics approach), is sociable and has many friends.

An excellent website is www.listen-up.org.

biglips Mon 31-Jan-05 10:26:16

crist - i wanted what your son had got but my hossy dont have them - hope they will get them cos i found out about that in a local newspaper about a young girl in her 20s had got them and she can more or less hear as a hearing person. ive just got the ones below them and they are good too -cant complained but i realised how crap my normal hearing aid were and DP is more happier now as he stopped repeating words for me (bless him!)

biglips Mon 31-Jan-05 10:26:57

Message withdrawn

Cristina7 Mon 31-Jan-05 14:23:58

Biglips - that's a lot of money but they are good aids. I listen to them (I try and do it every morning, just to check all's working in order) and they really are crystal clear. I know with other aids, for example, I wouldn't be able to follow the TV without subtitles or listen to my husband with lipreading, because the sound through the aid just wasn't clear enough. And if it's not clear enough for me, with perfect hearing, what chance has he got?

The trouble with these digital aids is that they do take a while to programme. We have spent 1.5 hours at the hospital programming them first time, then took our son in again to cut out 4 dB because they were giving too much feedback, then another 1.5 hours at the follow-up appointment 4 weeks later to see how he gets on with them. Of course, I don't begrudge the time spent there, but it just shows though that they do cost the NHS more and not just in terms of equipment. They told us at the hospital that they no longer send analogue hearing aids for repairs because they are being phased out and being replaced with digitals. Fantastic!

Are you all in touch with your local NDCS branch and is it an active one? Ours, I'm glad to say, organises quite a few activities throughout the year and it's lovely to meet the other children and see how they've come along within a few months.

Cristina7 Mon 31-Jan-05 14:32:28

Geogteach - my son is 5 and we still use toupee tape. We change it once a day only, every morning, although maybe more often in the summer when he sweats more. He's got very used to the tape and doesn't like the aids without it. He is a very active boy and has only once lost an aid, in a softplay centre, he must have got really sweaty. He was with the nanny and they had a good look but couldn't find the aid. My husband went again after closing time and had a look under all the balls etc (centre staff were very helpful), no luck. Fortunately, we always have a spare pair of hearing aids (analogues) and we even keep old earmoulds for such emergencies, so with a bit of Otoferm we made do until the next hospital appointment. (Very understanding hospital, perhaps also because it was the first time he'd lost an aid and it was an analogue one too, not digital.) The earmould fitting does get easier with time. We only do new moulds every 4 months or so nowadays (he's 5y 3m). Nightmare when he was a baby especially as the local hospital were useless at sending them out to the lab, they'd wait till they had a good enough number and then sent them in a batch, which meant 3-4 weeks delay just before sending them out. They were already whistling by the time they returned. We changed hospitals very quickly and have no complaints about our current one. Cristina

biglips Mon 31-Jan-05 18:49:27

well my baba got her 1st hearing test this thurs coming and im sssooo nervous, as i dont really want her to be deaf (she is very alert by noises but not sure about her left ear as sometimes she is alert with her right ear only and then other days she is alert with her left ear only!! - how do you know?)

Peckarollover Mon 31-Jan-05 19:17:30

Harveys referral has come through and we are back at the hospital on Monday

Does anyone know whatI can expect at this apointment?

He has failed his hearing test at the doctors then had an appointment at the audiology department where they detected hearing loss and have referred him to consultant.

geekgrrl Mon 31-Jan-05 19:17:46

where do you get the toupee tape from? we only got some little stickers which are no use at all.
Our hospital is also very slow with ear molds - the lab they use takes two weeks and then it takes them a week to post the aids out to me. Really annoying, but at least they manage to make molds that fit for a little while rather than not at all....

nutcracker Mon 31-Jan-05 19:47:50

Hi could i just pick everyones brains on this thread please.

My Ds aged 2.1 failed his hearing test. He passed his one at 9mths but i had him reffered from his 2 yr development check as i felt that he sometimes had trouble inderstanding me. He was also reffered for his speech to be assessed as he says quite a bit but most of it only understandable to me.

I am very confused about the tests he had last week. The first test was where i sat him on my lap and there was a box either side that made a noise and then lit up and showed him a toy. Ds showed no reaction to the noises at all in the is test, only responded to the light and the toy. The lady doing the test and the doctor seemed to be very puzzled by this and the doctor said to Ds "well, you didn't do the test, thay always do that test". Not entirly sure what she meant by that. Ds just didn't seem interested.
They then did the test similar to the one at 9mths where the person stands vehind them with the little machine. Ds turned to most of the sounds then, which confused me as some of them were quiter than in the other test. Ds did seem to know that someone was behind him though.

Anyway, the doc said that at 30 decibels he failed and so it was a fail. He is to be retested in April.

I'm not sure what to think. Dp keeps saying i am being paranoid and perhaps i am but 3mths is an awfully long time to wait and find out.

Do you mind if i ask you geogtech, how was it discoverd that your son had hearing loss ??? Did you suspect or someone else ??
I think i assumed that Ds's speech would be almost non exsistent if he had a prob but i read that you say your sons speech is ok.

nutcracker Mon 31-Jan-05 19:49:18

What is the chance that at the re test he will pass is probably what i really want to know, but i know you can't tell me that, just thinking out loud.

Cristina7 Mon 31-Jan-05 20:39:41

Geekgrrl - We bought the toupee tape from a shop on Wigmore Street in London (it has usual medical supplies but also more "alternative" stuff), they also have a hair clinic in the basement where they do wigs etc. The toupee tapes come in two strengths and the stronger one is better. About £4 per roll, a roll lasts half a year or more. We buy a few rolls once a year and keep one in the car, one in his school-bag, two at home.

Nutcracker - a 30 dB hearing loss is quite small but well worth being addressed. My son's hearing, with aids, is currently at 40-45 dB, so you can imagine how deaf he is by comparison. His best ever aided thresholds have been at 30-35 dB. I know the diagnosis is still worrying for you. Could it be due to glue ear?

Blossomhill Mon 31-Jan-05 20:42:17

Nutcracker - has ds had his speech assessed yet? My dd had glue ear and often failed her tests although some of it was down to lack of understanding due to her language difficulties. I know that when dd was assessed for her speech the first thing they did was have a hearing test to rule it out.

nutcracker Mon 31-Jan-05 20:46:10

Not sure about the glue ear Christina, he has never had an ear infection to my knowledge though.

Think i am more worried because i was in the room when they did the test and saw how he just completely failed to respond to any of the noises from the first test.
When they did the second one i asumed he had passed, so was a bit shocked to have them say he failed.

She did say 30 was borderline, but that his speech could be affected if he is not hearing word sounds correctly. That could well be the case as I think his speech is a bit behind and hard to understand. Am waiting for his speech assessment appointment though.
Would ringing them and telling them he failed his hearing test move me up the list do you think ?? Really want his speech assessed before his next hearing test.

nutcracker Mon 31-Jan-05 20:46:44

Ooops cross posted Blossom

nutcracker Mon 31-Jan-05 20:48:49

The only thing that concerns me is that sometimes i have such alot of trouble getting him to understand me.

Was looking on a couple of websites that said asking to have tv turned up was a sign of hearing loss, Ds doesn't do that as we have it wuite loud anyway, but he does turn the leappad up very loud and when he was on the balamory website ealier with me he pointed at the volume control, for me to turn it up.

Blossomhill Mon 31-Jan-05 21:12:29

Nutcracker - If you was in another room and called ds would he hear you then???

geogteach Mon 31-Jan-05 21:18:18

Have to admit I haven't learnt DS audiograms yet, people keep asking me. His loss is severe at high frequencies, presumably why he doesn't seemt o notice the whistle from his aid which is driving me insane. This particular one the impression was taken before christmas and we got it last week and he'd already grown out of it! His speech is good, I asked for the original test because he said ' huh' and 'pardon' just about every other word and having a conversation in the car where he sits behind us was impossible. Some of DS general loss was due to glue ear and he had never had an ear infection so that is possible nutty. I'm sure once we get 2 molds that fit it will all be a bit easier but the next bridge to cross is whether DS will need a radio aid when he starts school in September and who funds that?

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