Glue ear - any experiences?

[mistypop]

Hi, my son is almost 18 months old. He used to babble and make sounds like words but this all stopped ages ago and now he barely makes any sounds but occasionally says mama. He had a bad ear infection at about 11 months old, and had two different courses of antibiotics. I’m sure it was around then he stopped talking? He does respond to his name but sometimes I have to say it a few times or louder. I have some hearing issues in my family, my mum had glue ear as a child and also his uncle and both had delayed speech because of it. Does this sound like it could be glue ear? He is otherwise meeting all milestones and is so sociable? Just silent… if anyone has any experience of a similar situation I’d love to hear… I took him to the HV who has referred him for audiology and speech and language. Thanks

Where in London are you? My son was diagnosed with glue ear by the gp at 9 months. He wasn't babbling hence why we took him to get his ears checked.

Audiology saw us 3 months after referral and he had moderate hearing loss in both ears. They tested again 3 months later, same thing. And again 3 months later and it had cleared.

The ENT referral took just over a year and he is still clear but they have asked audiology to keep checking every 3 months to keep an eye on it.

It's worth staying in the nhs system if you can because they test the hearing regularly. It's not just a one off thing

Couple of other things the ENT consultant told me:

• it's not necessarily connected to infection. It can just happen when congested. My son has no signs of infection and as far as we know has never had an ear infection.
• between 80 and 90% of children get it before age 8. It's super common. The impact is more to do with timing and how long they have it for

My daughter 11 was diagnosed with both ears glue ear with no obvious sings of hearing loss ( son 2 has one glue ear no obvious signs of hearing loss) it was more her snotty nose and allergies which were the issues and the ENT mentioned her glue ear when examining her , we are in me London and she got her operation at Homerton 2 months later ( last month) recovery very quick no problem I think they are trying to clear back log of operation especially for kids
Ask a doctor or the nursery for their opinion

Hi @loveacupoftea18, is that Mr Lilly as in Cromwell hospital?

@Sofarsogood123 thank you. although he wasn’t babbling, did your son show signs of not being able to hear? did he turn for his name etc? we are in Bermondsey, I’m thinking of getting the hearing test done privately at Cromwell hospital, they’ve offered me an appt next week, but I won’t be able to afford to get any extra treatments he needs done privately so that will be nhs

I’m not sure with a little one so young as my DS was 4 and his symptoms were not hearing us, us having to repeat ourselves, sitting close to tv and sometimes mishearing words (names in particular were tricky as so abstract). His sounds were a bit fuzzy so f and s sometimes mixed up. We paid about £3k in total to have him seen privately and he had grommets fitted and since then no issues at all. We were about 4 weeks from initially booking the audiology test to having the surgery as we wanted it sorted before school.

If I were you I’d push for him to be seen sooner rather than later due to his age and such a critical time of learning to talk.

Hi there. My 3 year old had grommets put in last year because of glue ear.

Just to highlight that all it took was the consultant looking in his ear to diagnose glue ear. My son actually passed his hearing test (after we knew he had glue ear). The consultant said that hearing test alone is not enough to diagnose as (like my sons case) hearing can fluctuate with glue ear so it just happens he seemed fine that day.

We paid to go private as the NHS waiting list was extensive. Hope this helps!

@mistypop no real signs of not being able to hear initially. His father took him to the audiology appointment and I almost didn't believe it because I didn't see it for myself. He could hear at some frequencies and not at others. For example I was convinced he could hear a key go in the door but turns out he couldn't hear standard speech volume so now I doubt myself. Later on it was very obvious to me, once I knew, when the glue ear had cleared and when it would come back.

My son had ear infections from the age of 3 months resulting in multiple bilateral perforations and internittant glue ear between perforations. He had grommets but this did not address the underlying reasons for the infections.

He learned how to speak, despite periods of profound deafness, with the help of baby signing and lip reading. We worked this out as he could understand and respond when we were looking at him but not when he couldn't see our faces and there were some words he only heard in passing without seeing the mouth shapes that went with them and he didn't say those words properly.

He also learned to watch what other people were doing when he didn't hear instructions so many of his teachers were unaware of his hearing losses until we told them. When it came to learning languages, he found French more difficult than German and I think this was due to how some of the sounds are formed and heard with consonants being more pronounced in German but it may also have been related to teaching and differences in his hearing at critical points of learning.. we will never know as he speaks both quite well now.

Osteopathy helped when he was in pain and helped drain his ears when they were blocked and sometimes prevented perforations. We eventually figured out that there were food triggers....

Due to the number of perforations before and after grommets and the inevitable weakening due to the grommets, he does have some permament hearing loss but has managed to mask all of this pretty well.

Yes. We saw him at his Wimpole St office but having procedure done at Cromwell Hospital.

He was wonderful and really took the time to explain everything to us. We had previously seen a private ENT who had dismissed us but I didn't realise there were so few paediatric ENTs.

Hi what food allergies did you find please?

The waiting in london could be up to a year. If you can afford it go for private hearing test. Costs range £200-£300.

3k is about right for self pay if you do not have medical insurance

Hey

How much did it cost to go private? Experiencing a long waiting list here as well.

Definitely get it checked out with a private hearing test if you are worried. My DS had terrible hearing and I took way too long to sort this out despite worries. I was mortified to discover he basically could only hear around 25pc of what was being said

Cost us £4k in total from initial consultation, surgery and follow up. My DS was offered a package deal that included grommets and adenoids out and all care in one price.
My DS had hearing loss of 50-60 decibels so was missing so much of what was being said.
Privately the place we went they only offer it from 3yrs old and min weight of 15kg.

@Bloomz hey I don’t know what area you’re in and if this is the case everywhere - but with the long waiting lists I just keep calling up (or even going in) and asking for cancellation appointments and have got them. I managed to get appts at both Guys and Lewisham about 4/5 months quicker than what they initially offered me. So maybe worth a try.

my son is going to have a hearing aid fitted in the next couple of weeks as they don’t want to do grommets before he is 3, does anyone have any experience of hearing aids actually working for their child? It will be on a band round his head so I can’t imagine it will be easy to keep it on him

My DS was given a head band hearing aid. He chose a red one. Its a conduction hearing aid. He would wear it at home a bit and for a couple hours at nursery but said he found it really loud as he wasn't used to it but that words were still muffled but a loud muffle and said it hurt his ears. The audiologist said if they can wear it all day from waking until they go to bed they get used to it but my little boy just didn't want to wear it. It's a soft stretchy material a bit like a sweat band.
I hope your little one gets on with it well and gets surgery as soon as possible as the difference is amazing!

@mistypop hey I’ve just come across your post and wondered what the outcome of this was?

Your original post sounds exactly like my 18 month old at the moment.
When he started walking (13 months old) I noticed he would constantly tilt his head to the left and right almost rubbing his ears on his shoulders but didn’t really think anything of it - he’s always met milestones and babbled a lot! Started saying “more” “mama” “baba” for dad “no” and I had no concerns. I’ve looked back at videos/ pics from last summer when he was 9months - 12 months and he always looked up and smiled when we called his name however, he had a seizure last summer which turned out was from bad tonsillitis and had loads of colds over the winter - when we took him to the GP they always said his ears were inflamed and red but no infection however when I had this double checked on several occasions it turned out he did actually have ear infections and needed antibiotics which makes me think his other colds he probably also had them but was told he didn’t?!

anyway my parents look after him Monday- Friday and brought it to my attention in the new year they was concerned about his hearing, when I started observing and looking at recent pics videos I have noticed he now doesn’t really respond to us and is 50/50 when we call his name - his not understanding which is a 18 month milestone and only occasionally now says mumma and nothing else.

I contacted our GP was told it’s quicker for us to self refer for an audiologist appointment so I submitted this to our local hospital (SW London) and had an appointment the next week - he technically passed with 1/4 but they said to come back in a couple months so they could re do the test. They also confirmed glue ear but said give it 3 months and see if it naturally clears (being told this in Feb isn’t great due to it being cold season and only last week was he on antibiotics for a double ear infection again 🙄

I have now contacted the New Victoria private hospital and we are going private seeing an ENT specialist and will pay for any surgery he needs… my concerns are these symptoms are also linked with autism so I’ve worrying a lot (not great at currently 32 weeks pregnant with our second) The audiologist did confirm glue ear so I know he definitely has it… I’m just wondering how your little one is doing now? I hate seeing my LB so uncomfortable literally 24/7 he doesn’t stop pulling at his ears and they are clearly making him very irritable which is so distressing to see😭

Hi
this sounds exactly like my daughter! She’s 17 months. Do you have an update on your LO please? x

Hi @atay27
so my son will be 3 in September, he is autistic and has no understanding or any speech- meltdowns constantly all day everyday. When we went private for ENT they confirmed he no longer had glue ear and it had only been in one ear for a couple of months so wouldnt have affected any of his hearing- we didn’t really think it was his hearing as he would run across the house if he heard his favourite tv programme.

As he’s gotten older he Stims all day and struggles to be around his younger brother who is just turning one and also shows a few signs. He still to this day doesn’t sleep through the night and most nights we are up for 3/4 hours in the early morning. He goes to pre school but they wouldn’t allow him a place unless he had a 1-1 there so he has one at school for the mornings he is there.
it’s been so hard and challenging especially with our youngest as we’re constantly watching his developments/milestones.

Hi
Thanks so much for your update. I hope things get easier for you. Sending lots of hugs!

No worries! 😌 sorry I couldn’t be more helpful on the glue ear side!

Hi @atay27 if you want to private message me I can answer any glue ear related questions you have as I’ve been through it all with my son and he’s had grommets now and is like a different child..he’s 3.5 now he was only 18 months when I posted this so it’s been a long journey !

Hello. Yes please! How do I message you? xx