Grommets in, still hearing loss - adenoid removal?

[ENTnightmare]

My toddler has suffered from frequent ENT infections since she was a baby. Mostly ear infections. She has delayed speech and communication as well as questionable hearing (although impossible to get a retest via NHS and private don't test under 3s where I am).

She was diagnosed with glue ear and managed to get her grommets out, I questioned if she could get het adenoids out - surgeon said wait and see as grommets usually solve the problem.

Well, 3 months later the problem hasn't been solved as although the glue ear may have cleared there is still significant pressure from the swollen adenoids so hearing and speech delay is still a major issue. I have tried to contact consultant but have just been told to wait until review which is almost a year away.

What do I do? I am fortunate enough if it comes to it we can go private, however we are under ENT care which is the hard bit.

Has anyone been through getting grommets in and the hearing loss not not being resolved until adenoid removal?

@OrderOfTheKookaburra

I think the NHS test is so stupid, the clear boxes with the animals/sounds in them light up so how can they gauge that they are turning to the sound and not the lights.

I think the adenoids are having a greater effect than initially though. I just want tl know if they can still affect hearing even though grommets have been inserted as the pressure on the eustachian tube is bound to hinder hearing.

ENT problems in children are so exhausting , you are dealing with a child with regular infection which is a whole problem in itself but you then have the caveat of these problems having a direct knock on effect on speech, hearing, eating, sleeping, concentration and behaviour. With the cherry on top of being gaslit by doctors and surgeons who won't believe what you are telling them about how significant your child's problems are.

That is so true! The only reason we got a referral in the first place was because this really lovely locum got the shits with the rest of the practice and said "I'm referring him. This is too much, and I don't care what anyone here says!"

Can I ask when these were done? Those are the hearing tests I remember from being a child, but they v only give dd the kind where you hear single tones and press a button. And I think that that’s a different thing, just because she can hear someone is talking doesn’t mean that she can understand what is perceived as a muffled sound.

DD1 had grommets but eventually the ear infections & hearing problems came back. She had a second lot of grommets plus adenoid removal & hasn't had any problems since & that was nearly 10 yrs ago.

I was surprised that DD1 didn't have her adenoids removed to start with. As I had my adenoids removed and grommets put in when I was younger. Glue ear runs in my extended family as quite a few of us had it.

I’d be pushing from the sleep apnoea angle if I were you. If you can get a video of the pauses in breathing that can really help build your case.

We ended up going private but I showed the consultant a video of the sleep apnoea and snoring in addition to the glue ear, and it was agreed to do tonsils, adenoids and grommets in one operation. All this was done at just under 3 years old. We were fortunate that the consultant was of the opinion that it’s better to just get it all done in one operation than have multiple surgeries (and he wasn’t quite sure how my child had been eating with golf ball sized tonsils even when not infected!).

You’re right that removal of the adenoids is meant to help drainage from the ear. We still get discharge from the ear with the grommets in, but it’s not infection based now, more like snot! Apparently that’s normal though.

Coupled with speech therapy we’ve noticed a real difference. In the interim between a possible second surgery I’d look into whether speech therapy would be appropriate for you. We’ve been doing cued articulation and that’s made a noticeable difference. There are lots of videos on YouTube. Our speech therapist recommended the one by Jane Passy.

Just wondering how much people paid privately for ENT and adenoids out?

This is really good to read, I feel a little vindicated in knowing that even though the grommets are in place that the adenoids and possibly tonsils can still be contributing to the lack of hearing. We have started speech therapy, however it is difficult at the minute until hearing problems are totally resolved.

I think we're just going to go private. Even if I win a fight with the NHS it'll still be ages before op, when it is affecting development you don't want to waste any time.

This is good to know as I feel like only half a job was done. Were the adenoids affecting her eating/sleeping?

I researched last night and apparently enlarged adenoids can eliminate your taste and smell (like covid) and food can be tasteless, I've noticed a massive decrease in my daughter's diet - I wonder is it down to that?

@BouncingWorms - it was at East Surrey Hospital at Redhill. It was just over 10 years ago now though.

@ENTnightmare - I second the sleep apnea angle, the only other under 3 year old was put straight onto the list without a wait based on that. I think it took about 2 weeks from memory of what the parents told me.

We have a private consultation booked 🤞 all goes to plan.

Can anyone give me advice on how to basically say, the grommets haven't really gad any effect, as an unqualified parent (who has ready every square inch of the internet on this topic) I am certain the adenoids are still causing hearing loss and balance issues.

Well, my ENT was clear that there was no way to definitely know whether the adenoids were or weren't causing problems until they went in. So if the grommets haven't fixed the issue the. The adenoids should be the next port of call.

I’d just explain. The symptoms and ask the ENT to look at the adenoids.

we went privately, I described the symptoms and the ENT said he was almost certain it was large adenoids, opened DS’ mouth and sure enough they were huge.

operation at 2.8 to remove tonsils and adenoids and insert grommets. Three years later and he’s a different child.

Just go private. Every month makes a child fall further behind. My son comprehensively failed a hearing test - a private one. He had grommets and his adenoids removed within a week. There was a cancellation on a surgical list. The ENT specialist said she was removing the adenoids as he had tendency to dribble.

Has your child ever had a hearing test, either pre or post grommets? Without one, you won’t know what effect the grommet insertion has had. The grommets may have come straight out which is why they are not effective. If your child’s hearing loss was caused by glue ear then the grommets would have had an immediate effect.

Your comment about NHS hearing tests being ‘so stupid’ is really rather offensive to the qualified Audiologists performing the test. An NHS hearing test is really not an inferior test. In fact, the Audiologist may be more qualified and experienced than someone working privately.

The test you are describing, called VRA, works by initially conditioning the child to turn for the sounds by firstly showing them the sounds and lights/toys at the same time. Once conditioned, they are only shown the lights/toys as a reward for a correct turn. The child is NOT rewarded for turning unless there is a sound. We aren’t idiots, we know that some children will check between sounds and that we do not show the lights and toys until AFTER the child has turned.

At your ENT appointment it will be important to establish whether the grommets are in place before going into whether or not adenoid removal is needed. If the grommets are in place, a hearing test is extremely important as if your child still has a hearing loss with grommets in then it is really quite possible that the hearing loss is permanent.

@AudiologistHere

Apologies, I didn't mean any offence. I in ni way audiologists were unskilled , believe me, ai've been trying to see one since December. I also didn't mean the test itself was ridiculous what I meant was that the lights often made my child turn so perhaps the boxes should have just been sound.

I suppose I am looking at it from the position of a non-verbal, non understanding child so they weren't able to take part in one of the other style tests.

The test meant my child was sufficiently able to turn enough to most sounds that they were able to rule out hearing loss. The tympanogram had a flat line indicating glue ear.

She had grommets in 3 months ago but so far has't made a lot of progress with listening and speech. She is having severe problems with enlargement of her tonsils adenoids. She has since had 2 infections since grommets (throat and sinus). I have been trying to get a follow up hearing test and I have to wait on her review in December. You can't get it done privately apparently.

Can you please explain how air can flow and liquid can drain if the adenoid is compromising the eustachian tube? Also, I know grommets are still in as GP looked. Is there a chance they could be blocked or glue ear still present by just looking in or does it require a test?

What symptoms did you experience?

Was balance an issue with you?

I'd agree with you regarding the tests, we've seen multiple NHS audiologists with my 2 year old (she's been open to audiology since she was around 18 months) and they've all been able to tell when she's turning and preempting and when she's not looking because she's become distracted. In all honesty, as a mother to a child who is open to 7 different hospital specialities due to a complex genetic condition, we've felt audiology provided our daughter with the most age appropriate testing, appropriate time and child centred approach with quick response when she needed Hearing Aids whilst waiting to see ENT.

Slightly off topic but in terms of adenoids, does anyone know if issues there can cause sticky eyes as well as the glue ear issue? My daughter has moderate hearing loss attributed to glue ear at the moment, but she's also got gunky eyes pretty much constantly and she seems to always have a cold. This thread had me wondering if it was potentially connected, although I suppose we'll have to wait for ENT.

Audiology said my DDs hearing was fine both times she was tested. When she wasn't doing what she was supposed to they declared her bored. No, she couldn't bloody hear the sounds.

As with all things it depends on who you see.

Still so cross about this more than a decade on.

This is what I felt, they said she was getting distracted but I felt she didn't hear some of the sounds and that's why she didn't turn.

What hearing diagnosis did your child end up with?

The lights won’t be shown until AFTER the child has turned in response to the sound, as a reward, not in response to the light, otherwise it isn’t a hearing test at all. If your child was being shown the lights BEFORE responding to the sound then the test was carried out incorrectly. It’s an internationally used hearing test, it’s not something made up (it is called Visual Reinforcement Audiometry).

In terms of the glue ear… treating the glue ear will only improve the hearing if there was a hearing loss to begin with. Glue ear in itself does not always cause a hearing problem. If the grommets are in place then you can assume they’re working and that your DDs hearing is currently in the normal range (there are some cases where a child’s hearing loss wasn’t caused by the glue ear, but this sometimes only becomes evident after the grommets have been fitted and after they still have a hearing loss. This is pretty unusual though).

If the grommets are in place then removing the adenoids isn’t going to improve her hearing. Removing the adenoids could help prevent further glue ear from occurring once this set of grommets fall out.

Have you considered that her speech delay is not linked to her glue ear? Does she see Speech & Language? If this were my child, I would be booking a private SALT appointment and cancelling the ENT one (if the GP has said the grommets are in place).

@MaltedCow It’s good to hear that your DD has been looked after well by Audiology. I don’t think I’ve ever heard of sticky eyes being linked but if she’s generally unwell with colds then glue ear and sticky eyes can both be symptoms of that. I doubt sticky eyes can be related to enlarged adenoids.

My mum has grommets, and is still really struggling with hearing (and smell and taste)

Turns out her ear drum is perforated, which can be a side effect of grommets. Quite common apparently and causes all of the above.

ENT has advised it will heal, but will take a while, and just to sit it out. And talk loudly at her 🙄

@AudiologistHere

Yes we are currently under SALT, we are currently working on single words, hearing is still questionable - (it was mentioned it could be be more attention and listening skills due to glue ear/hearing loss and current episodes of sleep apnea).

I'm at a bit of a loss to be honest. She failed her newborn hearing test due to too much fluid in her ears, she passed the ABR test a few weeks later. She had a low birthweight and I have been told she has really small ear canals.

The test you talk about she passed as they said they were satisfied she turned enough times, she then got a flat line on the tympanogram, consultant confirmed glue ear after grommets surgery.

We're 3 months in and I feel she is still in her own little world. Hence why I question are the grommets blocked - if they are how would I know?

My next steps are tonsil and adenoid removal to see if it helps anything, I really don't know where to go from here. I am utterly desperate 😢

@ENTnightmare i’m so sorry you’re having all of this stress. A doctor or Audiologist can usually see if the grommets are blocked or a tympanogram can confirm this (the test done for glue ear). You probably wouldn’t know otherwise. Did her hearing improve straight after surgery but then go down again after?
how old is your DD?

@ENTnightmare ive not heard of a refusal do do a hearing test post grommets. In my department, it is standard to do one 6 weeks post surgery to ensure the hearing has improved. I think it’s terrible that they aren’t seeing her until December.