any other parents of hearing impaired children out there?

[2under2]

We've just found out that both our daughters (3.5 yrs, 22 months) have a moderate hearing loss due to glue ear. Thankfully our eldest should be able to get it sorted out with grommets, but the little one's placement of grommets was unsuccessful because her ear canals are just minute. The ENT surgeon is pretty certain that grommets won't be an option for several years and also that the glue won't just go away, so now we're looking into hearing aids. I was wondering if there's anyone else here who has a child with hearing aids?

It is such a shame that the surgeon thinks grommets would be impossible for your 22 month old. My son had his fitted at 24 months, very successfully. Is there any way you could get a second opinion?

Also, I'm not 100% certain that hearing aids can help with the type of deafness that glue ear causes. Has this way of coping with it been definitely recommended to you?

Something else to look into might be also be cranial osteopathy and also complementary medicine such as homeopathy and dietary solutions too.

I've heard good things about cranial osteopathy helping clear glue ear too.

In answer to your original question though, whilst my DSs don't have hearing aids, a friend's DD (aged 4) has had hearing aids for a year (and now has a cochlear implant) but she is profoundly deaf.

DS has a level of glue ear although we are still waiting to see the ENT specialist about it. The possibilities mentioned to us were grommets or removal of adenoids - I think that this reduces infections which are causing the glue. But as I understand it glue ear has a sort of muffling effect (sorry I'm not meaning to be patronising I'm sure you know all this already) like being under water for instance - so surely an hearing aid will just make the muffled noise louder rather than clearer?

Not sure if DS will clear up naturally he's had far fewer colds/ear infections etc this winter than last. And speech coming on quite well although some of his pronunciation is like he's got a cold (when he hasn't) which makes me suspect this is how he is hearing it.

Also I had hearing problems as a child and was eventually given an hearing aid which basically didn't work. I don't think my problems were that severe for it to make much difference and I think I was given it as a way of clearing me out of the system which it did.

dont know if this applies but we found out our daughter was partially deaf about a year ago and she must have been this way since she was little. she is about 25% deaf in both ears which isnt enough to be picked up on standard tests.

so what i want to say is, give thought to speach therapy and getting you name on lists and asking about it as i have found out it varies from region to region - in manchester dd was automatically entitled to a speech therapist through school but down south she has to be a special needs child in school to qualify - which as a near 10 yr old who cannot pronounce words properly i find a total disgrace that the local authority isnt more proactive.

any way i have tailed in to a rant

enquire about speech therapy now , dont leave it too late and end up being on the bottom of a two year waiting list - may as well get on the list now and say your child doesnt need speech therapy come the time
too much time passes, lists are too long, resources are too short - dont get caught in it if you dont have to
good luck

Thanks for the replies! We have actually been going to a cranial osteopath every month since dd was a newborn. Dd has Down's Syndrome and glue ear affects 90% of children with DS, so I was hoping to prevent it by going to see the CO often. Dd already has speech therapy, too. Unfortunately glue ear is notoriously difficult to cure in children with DS as many have unusually small ear canals and the gunk tends to be particularly sticky. I got a second opinion from an ENT consultant at Great Ormond Street who agreed completely with our ENT surgeon.
I do think hearing aids will work from what I have been told - it has been recommended to me by all the medical people who deal with dd's ears. If she doesn't get hearing aids she will not learn to talk as she cannot hear speech properly at all and the ENT consultant thinks that he won't be able to get grommets in until she is 6 or 7 at the earliest. sigh I'm just not sure dd will be all that pleased to have something stuck in her ears. I have a hard enough time to get her to keep her hat on or her socks! Still, I guess other people have been through it and have coped. I do find it a bit difficult to accept though as dd seems to hear plenty of sounds, does a great rendition of 'Twinkle Twinkle' with 'baba' for lyrics but correct melody and babbles plenty.

2under2- my ds1 is 3 and a half and can't talk properly at all - mainly vowel sounds with a fe b and d's etc (this has always been put down to his autism although I've been saying to everyone that his speech problem was a separate issue). He's failed two hearing tests. Anyway eventually I found a speech therapist who actually wanted to hear him speak (amazing noen of the others have bothered). Anyway she found that the sounds he isn;t saying corresponds to the part of the auditory spectrum (thinkI made that word up but you knwo what I mean) that he is failing his hearing test on. He can also sing perfectly in tune and can understand what is said to him. She exaplined that if he is missing part of each word it becomes very difficult to learn to speak. For example if he is saying "up the stairs" he says "uh he ain" but the SALT said that's what he may well be hearing. Anyway disgusted with the NHS and fed up of banign my head against a brick wall we are off to get a private assessment from BIBIC-. That's not relevant to you, but just to say it may well accept her speech and I'll let you know what we find out. Hoepfully we'll be seen by next month.

sorry been away all weekend- may well affect her speech and ignore other typos

I concur with your and the speech therapist's theory jimjams. I had speech therapy as a child - dunno what sounds I couldn't get but do know that I still cannot pronounce "th" - it always comes out as 'f' or 'v' and thats how I hear it.

jimjams, thanks for that. Finally a good way of explaining to dh how dd will perceive speech. dd understands a good amount but does not say a single word other than 'no!', she used to say 3-4 words about 6 months ago but doesn't any more. Thankfully we have been getting speech therapy for over a year already and it is easy for us to get good services because dd already has a disability. However, we still get to play the waiting game when it comes to ENT and audiology appointments, which is driving me nuts!! I think I have found the right aids for dd (some called BAHA softband which is a headband and bypasses the middle ear) now all I need is an audiologist. I just want to get on with it all!!

thisis not onthe hearing part but 2under2 my little has also has Downs syndrome and I was wondering the valueo cranial osteopathy?? Any ideas. Her hearing is okay although we have been unable to have a satisfactory test at this stage. She made too much noise through the last test and so the computer was not able to test her effectively. We have an appointment with ENT and an audiologist next month. They didn ot mention glue ear last time we went for an appointment although Dh and I had read about it. I did not realise it affected so many hcildren with Down Syndrome. Thank you for that information.

oh I know I am not having a good day - look at that typing.

eidsvold, Hi there! We also never had a satisfactory behavioural response test - dd is for too interested in flirting with the person in front of her and dissolves in giggles at the slightest eye contact with them, so it never worked. We eventually decided to see an ENT consultant privately because I'm a natural worrier! The ENT chap said that behavioural tests aren't much use in children with developmental disabilities anyway and put her on the waiting list for the brainstem response test under general anaesthetic. She'd passed one when she was 4 months old but that was before she'd been through her first winter. We waited 6 months for this ABR, shame about the wasted time but the test was well worth it. The level of loss is a bit stunning though - everybody who is involved in dd's therapies thought she could hear ok, but the middle ear that the surgeon could actually get to was so full of glue there's no doubt that her hearing must be considerably affected and the ABR results are true. Anyway, so much to that!

As for cranial osteopathy - I'd read so much stuff that it is particularly good for children with DS as it can alleviate some of the problems the small midface brings about. I don't know how old your daughter is, but when dd was under 1 she was always snuffly. I think the osteopathy did help with this a bit and opened up her nose. And, well, apparently it can also help prevent glue ear. Maybe dd is just unlucky that it didn't work in her case. The osteopath also always did a lot of work on her chest because of the heart surgery, apparently when they rib cage is forced open (don't you just feeel like passing out thinking about it? ) it can cause long-lasting congestion and the osteopathy supposedly moves everything back into it's rightful place and helps prevent adhesions. I've had cranial osteopathy myself for sinusitis and can say that the touches are always extremely light, a bit as if he was just stroking my head with his fingertips lightly (maybe he was? ) and dd always relaxes and enjoys her appointments. Please feel free to email me ([email protected]) if you want to keep in touch.

Does anybody know of a type of hearing test for children that they themselves have faith in?
My ds (now nearly 4) has had glue ear for ages (although it was not diagnosed properly for about 18mnths)and the hearing test at our ENT clinic is based on him hitting a drum when he hears a sound in his earphones. He is such a lively boy who loves to bang things - especially drums and the ear phones are such a novelty that I've no confidence in the results of the test (we get different results each time - always showing some hearing loss).
I would like to request a different test to try and get a more accurate measure of his hearing loss - (I've had to walk over hot coals just to get him in to the clinic, so I want to be constructive about it rather than seeming to lack faith!).
(By the way, I've heard that there are a few ENT schools of thought about glue ear - our consultant is of the 'keep the ear dry at all times and use Piriton' school, and this seems to work for ds - but it does mean no swimming which is hard for him.)

Caroline55,
here's a description of a test which has recently been trialled in the UK in newborns where they look how the ear itself responds to sounds, rather than wait for a response from him/her. I'm pretty sure the success means that this method is to be adopted for all newborns eventually, but I'm not sure whether it's ever used for older children like yours.

bundle my daughter had that test but it was very inconclusive - firstly as she had a lot of fluid in her ears and second time she would not be quiet nor would she go to sleep. Essentially the babies need to be asleep for it to work effectively and as Dd wanted to chat to the audiologist it was useless. At one stage the computer was trying to filter out 139 'bad sounds'.

2under2- I'm talking to BIBIC (British Insititute for Brain Injured Children) tomorrow morning about getting ds1 properly assessed- especially for hearing. A consultant audiologist sits on their advisory panel. I'll ask them how they do it and then get back to you.

The best hearing test we've had so far was the puupet one. There's a sound and the puppet moves. They're on different sides of the room so they turn to see the puppet on hearing the sound. I was very clear that ds1 had hearing loss in his left ear with that test- if he turned at all he turned to look at the right side. That was performed at the Nuffield Speech and Hearing Clinic in London. I'll see what BIBIC do- they're obvioulsy used to developmentally delayed children (which is why I want ds1 seen there).

Caroline, there is the ABR test that bundle is talking about which is available for everybody, though as you've heard it needs to be done whilst the child is asleep (for babies) or under a general anaesthetic (for anyone over 6 months). ABR only tests certain frequencies though. My 3 yr old daughter also had a hearing test last week where they got her to put little men into holes in a toy boat whenever she heard a sound and that was very accurate. Maybe they could get your ds to drop a brick into a bucket or something like that? It sounds like drum-bashing is just not the right test activity for your ds!

eidsvold, how annoying, I thought that test sounded ideal. hope you all get some joy with this hearing business.

Caroline5 - you can get special made-to-measure ear plugs which your ds (?) can wear swimming. We've had them since dd was 2 & it's made a big difference (and she can now go swimming a lot). Don't know how we would have managed the family holidays without them. You can normally get them from audiology depts if you've been referred, but we've also had them fitted at a private hospital The private hospital will do them for anyone, not just people being seen there (got elder dd some too) and cost about 35.00.

thanks for that 2under2 - my husband and I are going to look into that for our daughter although it is horribly expensive isn't it??? (cranial osteopathy i mean)

it'll be between £25 - £35 depending on who does it and where you live etc., and then you only go once every 1-2 months.

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thanks robinw!! will check it out and talk to the ENT consultant with it on Tuesday. I think I will push for hearing aids as an immediate help but will pursue other avenues to get it cleared up properly hopefully.

I too am thankful for those websites robin. I am beginning to suspect my daughter has excess fluid onthe ear and might want that information up my sleave when we have our next ENT/Audiologist appointment.

2under2 thanks for that information - I am going to do some research and check out the people listed in our area to see what I can find out. Thanks also for your email. I find your postings so helpful as I am a few steps behind you and feel that I am a little better prepared to deal with things as they crop up.

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