Glue ear and hearing loss - WWYD?

[RoyalGalas]

My 5yo has suffered with intermittent hearing loss since last summer. It'll get better, and then she'll suddenly be as deaf as a post - we have to shout to make ourselves heard, and it's obviously frustrating and upsetting for her. It does get worse with colds etc, but her it can be bad without any obvious illness. She also has quite nasal speech, regardless of whether she's snotty or not.

We finally got an audiology appointment last week. At the appointment her hearing seemed - for her - pretty good. She was diagnosed with glue ear and moderate hearing loss, and we were told we'd get a follow up appointment with ENT in 3-4 months. The thing is, she has an active cold and is very snotty, and despite me trying to explain that the hearing problems have been ongoing for months, I think the audiologist was just putting it down to seasonal colds.

Would it be a bit pushy for me to go back to the GP and try to speed up an ENT referral? Her hearing this week is awful and I have no idea how she's coping at school. I'm worried about the social aspects as much as her learning. She's doing brilliantly with phonics etc and is generally enjoying school, but she's having to sit beside teachers and TAs because she can't hear, and I've seen her struggling to hear her friends. It's really sad to see and I don't know what another 3 or 4 months will do to her confidence and engagement at school.

To be clear - she isn't struggling like this all the time, it comes and goes, but it's hard to know how to manage it!

Honestly, I'd do whatever it took to afford private treatment. We're going down this route for dd2 as unfortunately the NHS massively let our older daughter down in this area. Within 3 weeks we have had an initial consultation, hearing test and have the appointment next week to explore solutions - hearing aids or grommets. The NHS waiting list is over 2 years in my area and I share your concerns about impact on education (dd is in preschool )and I just wasn't willing to gamble it. The consultant also works for the NHS so we did explore switching back to them once she had been assessed, but the doctor advised that the NHS policy is usually for another hearing test 3 months apart as some children do grow out of the issue, which adds further delay.

@KnickerlessFlannel It hadn't even crossed my mind to go private - can I ask how much it's costing??

Just getting a GP appointment around here can take weeks of waiting, so I think I'd better get on the case with the NHS and try to figure out how long the process is likely to take.

Can I ask how severe the problem is with your daughter? I feel like my daughter's problem is minimised by people (not her school, fortunately, they've been very proactive) and I'm questioning myself as to whether it's "normal" for children to regularly but temporarily lose their hearing?!

We’re in Ireland not UK but we went private and had our ds seen for the same and other related issues within weeks, a friend has been on the waiting list for two years to get her ds seen for the same thing publically. If you can go private do.

I'm not sure your how much your GP will be able to do to speed up a referral if you've only had 1 hearing test, although it's always worth asking! Here, the policy is you can only get referred to ENT once you've had 2 hearing tests 3 months apart. Even when my DS had obviously had hearing loss longer than that for it to have caused significant speech delay it didn't count. We only got an actual date for an appointment with ENT after audiology escalated after his 4th failed hearing test.... Also, what are the wait lists like for grommit fitting in your area? We'd given up on the NHS by this point and gone private but friends have been told that in our area patients currently being operated on have been waiting 18-20 months....

How good is your DD at following instructions? My then 6 year DD old developed glue ear. Given our experience with DS we didn't want to just sit and wait. We bought an Otovent on the basis we had nothing to lose and the evidence is it can sometimes help. My DD was really good at doing it twice a day and it was enough to clear her glue ear (confirmed by the 2nd audiology appointment 3 months later).

I think in all it's going to be about £3500. Dd's hearing is not really impacted by colds etc, she is quite consistent with her struggle but I did doubt myself as nursery staff didn't really have any concerns. I do think they get very good at masking and coping though.

@RoyalGalas DS's grommits were fitted 1.5 years ago. From memory, we had a consultant appointment (£250 ish), a private hearing test (£60 ish), another consultant appointment to confirm the decision to go ahead with surgery (£200 ish), another hearing test (£60, as the hearing test needs to be within 3 months of the operation and with summer holidays and getting a surgery date the previous one wasn't), the actual grommit fitting (£3000 ish), the post op follow up consultation (£200 ish) and a final hearing test to confirm hearing was then normal (£60 ish). We are lucky enough to have private health insurance through DH's work though.

Ds had bad glue ear and had three lots of grommets.

What I'd say is go back and explain how it's effecting her schooling. With his 2nd lot of grommets, I saw a registrar at ENT, and she said "best to wait and see 6 months". 10 days later he was back at the GP with another ear infection and bulging ear drum and the GP asked me if I was happy with that, and I said not really, but at the time I'd just thought relief he didn't have to have another operation. He phoned ENT then and there and got an appointment for a week's time.
The next appointment, they asked how he was doing and I gave a list on how it was effecting him finishing with "and he starts school in September." The consultant didn't actually look like he was listening much because he was writing, and when I finished he looked up and said "can you bring him in for grommets tomorrow?" Which I took thankfully. He said after the operation that as soon as I started saying how it was effecting preschool he knew it was urgent.

Now ds had glue ear from about 10 weeks old (and until he was around 13yo) so he compensated really well. ENT pointed out how much he was lip reading when he sat on my lap and moved my mouth round to face him when he wanted to talk - I had thought it was a cute attention getter for him with two big sisters to compete with. I discovered he was an expert lip reader (a party trick, much discouraged, used to be to tell people their PIN numbers in shops as a lot of people mouth them as they put them in) and he learnt to read using subtitles on the documentaries he loved (which meant he could read words like Spitfire, Concorde, engine and useful things like that before he could read table, chair etc). He compensated brilliantly, and I did have to remind teachers (and occasionally at 16yo still do) about his lack of hearing.

I remember after his 3rd lot of grommets he told me that "the leaves didn't crunch last year" in autumn, and he came out excited from school to tell me that "ch" and "sh" made different sounds-he'd always heard them the same.

Now ds had acknowledged bad glue ear. His hearing was measured more than once at less than 10% of expected hearing. But it was very seasonal. He measured one August at full hearing for his age. In fact they even described it as better than average. In October he was on 25% hearing and November 10%. He stayed at around 10% through to April, and then it started improving again. That is totally normal for children with glue ear apparently. He was always worse over winter, and even now tends to get ear ache 3-4 times over the winter months.

He did ask for hearing aids (he had a friend with them) instead of his third set, but they said his ear drum was bulging badly (they burst not infrequently) and he'd be better with grommets.