Glue ear - going private?

[LittleSausageFingers]

I hope that this is the correct place to post about this, MNers here were very helpful on my previous threads about my little girl. 10mo DD has hearing loss as shown by VBR and tympanometry showed her ear drums are completely rigid, pointing to glue ear, but I'm really struggling to get a diagnosis and feel like we're being passed from pillar to post by the audiology department. They said they will need to do more tests (VBR with little headphone things that sit behind the ear?) to check the hearing loss isn't due to something else, then the said that they might wait 3 months to refer to ENT in case it resolves by itself.

Meanwhile she doesn't make any speech type sounds, she can't hear a thing at home, and is really falling behind with her verbal communication.

Does anyone have experience of similar? We are thinking of going privately to an ENT, is this sensible or should we wait it out with the NHS? Or should we go privately to audiologist instead? Three months seems such a long time to wait in such a small child, especially when I've known she can't hear for at least the last 4 months.

DD has constant ear infections from 6 months old (and glue ear). we went private when she was 16 months as GP refused to refer to ENT. We saw a private consultant who was also working on the NHS. He was quite shocked that we had not been referred yet and said DD needed grommets. We could not afford the procedure privately so he referred us back to NHS. We had surgery to get grommets 3 weeks later on the NHS.

Glue ear is exceedingly common and comes and goes. All three of my dc had it. With two of them by the time they got the referral it had resolved itself (took about three months). My ds had a flat tympanograph so was referred back for a second test after two months to see if it would resolve; it didn't so he got grommets. If it is glue ear, it is good practice to wait a couple of months and test again to see if it has resolved. I see no point in waiting to refer to ENT though. The other thing to consider is whether grommets would be best anyway. The stay in on average 9 months then if glue ear remains a problem will need redoing with scarring of the ear drum each time (and a GA). A friend's dd has Down's, children with Down's apparently get a lot of glue ear for longer/older age so rather than Grommets they had a hearing aid.

If you can afford to go private, your consultant may well then take you on to his NHS list if further treatment is required assuming you don't have private cover for surgery

If grommets are needed there are different types, standard ones are usually extruded in 9-12 months but if a child requires them more than twice long term grommets can be inserted

You may want to look at the link between diet (dairy) and mucus that can be linked to glue ear

My dd is 4 and has had rigid ear drums (slightly retracted) since her first test at 17m. Never had an ear infection, asd and it's a nightmare to pin down hearing loss. She used hearing aids for a few years, now they think the loss in only mild and in low frequencies. Frankly most the tests have looked farcical and every single test has the same result and a wait and see...

I'd love to know a bit more but have been in an endless loop it feels if retesting

we had titanium grommets that lasted 18 months.

but agree, it is a general anesthetic and wasn't an easy decision but DD did not only have hearing loss but constant ear infections that went hand in hand with high temperatures and a lot of pain. she had it for almost a year before getting grommets. waiting did nothing for us but just prolonged her suffering.

Thanks all for the replies. I'm really keen to get DD sorted as she really can't hear much at all, and her speech and language development is really suffering. No ear infections, thankfully. I know it can come and go, and wouldn't make the decision to go for surgery lightly, but I feel that if I get at least a private consultation then I'll be doing everything I can. My DBro and I both had grommets as kids with success.

Hi op, we have been through this - I will pm you.

Hi

If it is just glue ear, then it could resolve itself spontaneously, hence the 3 month standard wait and retest prior to referral to ENT. I would suggest waiting the 3 months but in the meantime push for the BoneConduction ABR test with audiology to be done as soon as possible.

The reason for this is that with "just" glue ear, that once sound exceeds 60dB (the level of a clear spoken voice at about a meter away) then the effect of muting the sound due to glue ear is over-come. Most children of your daughters age pick up most of their language while sitting on a parents lap, with story time etc, so just using a clear voice (not soft and gentle) makes all the difference.

You say "she doesn't make any speech type sounds, she can't hear a thing at home, and is really falling behind with her verbal communication" this seems to suggest more than just glue ear. If there is an underlying sensory hearing loss, this needs to be established as soon as possible for intervention to help. Or if there is a problem with speech and language development, this too needs establishing as soon as possible.

For this reason I would be asking if your audiology / ENT department would be willing to do ABR under general anaesthetic. It is not liked by most places, and generally reserved for children with special needs that cannot cooperate with standard testing, but it is possible to request it. I doubt that you would be able to get this done privately.

Grommets only last a few months, before they come out. Sometimes a one off set of grommets helps sort things out, however with on-going issues you cannot keep getting grommets (they scar the ear-drums, so more than 4 sets of grommets is not recommended for anyone). Hearing aids are sometimes used instead of grommets, but for this the audiology dept would definitely need more information regarding the hearing (bone conduction testing - the behind the ear one).

The best advice while waiting is to make sure that where possible you make sure you get your child's attention focused on your face before speaking to them, and talking in a nice clear loud (not shouting) voice, so that they can lip-read at the same time as listen, use gestures with your speaking for language too. Plenty of time talking to them about everything, to encourage language development. If it is just glue ear, the speech and language will very quickly catch up when it is resolved.

At 10 months old, I don't think rushing to get grommets is the most helpful. Pushing to get a full hearing assessment is more important (be that at the same time as grommets or not).

Hi willitbe

Thanks very much for your message and really helpful information and suggestions. ABR under GA has been mentioned to us, so I will ask again about this when we get our next audiology appointment.

I think you're right that we need to get a full hearing assessment. She's coming on so well in all areas except for verbal communication. She scored a big fat zero in the "communication" section of her 9 month review. We had wondered if there was a behavioral issue behind her not responding to sounds, autism etc, but there are no other "red flags" to suggest that (at least to us).

I will be phoning up the audiology department tomorrow to see where we can go from here. Thanks

Our DS had glue ear as an infant although it was mild. It did eventually clear over 12-18 months. We opted for cranial osteopathy (able to access for free from a relative) although it's impossible to tell whether this was what helped clear things.....

Anyway it's recently been suggested to us that we get DS checked over by an ENT consultant in case some of our DS' troubles are related to tonsils and adenoids. We have decided to get a hearing assessment done privately at CHEARS as they can also screen for APD; if his hearing is impaired/depressed we will then look into ENT. If you don't get anywhere with the NHS you could maybe see if they can help.

My googling found that Mr Hartley at the Portland Hospital seems to get a good review for ENT. I am realising that our DS might have benefited from an ENT overview years back, rather than basic hearing assessment/audiology. Maybe this is why you don't feel you are getting answers.

CHEARS had this hearing checklist which might be useful although it sounds like you are quite clued up already. Good luck