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?

My memory from DC was we were told inserting grommets were about reducing glue ear and reducing infections; hearing improvement might co-occur but wasn't the goal.

We did however see immediate hearing improvement. After grommets came out we had recurrence of issues and then tAdenoids taken out 2years later.

Has she been tested for golden staph? I had that and had wayyyyy too many ent infections including inner ear etc until they found out.
I had adenoids done later

Are the grommets still in place? If they are and no hearing improvements I would be pushing for more investigation as to why her hearing hasn’t improved and what needs to be done to improve her hearing.
Hearing is so crucial for speech development, Communication, making Friends etc

I absolutely agree. The adenoid problems are really evident, snoring, sleep apnea, mouth breathing, bad smell from mouth, really excess mucus/snot.

The grommets are still in place. I suppose the glue ear was causing the ear infection and loas of hearing but I am hoping it's the adenoids causing a 'secondary' reason for impaired hearing.

No she hasn't, I just checked it up there and she doesn't seem to fit the symptoms but worth knowing about for future reference. Thanks!

That's good to hear. Why had you the adenoids removed?

She seems to be having problems with balance, hearing, speech and headaches/dizziness (she's not talking yet but she hold her head/eyes often as though she has a headache)

My GC has had both. She got hearing aids when she was five. The grommets didn't do much tbh, probably cut down the need for antibiotics for a few weeks at a time. The issue is that not even the consultants know if it will do what's hoped. Once my GC got hearing aids her speech caught up.

"She seems to be having problems with balance, hearing, speech and headaches/dizziness (she's not talking yet but she hold her head/eyes often as though she has a headache)"

That's typical/usual glue ear symptoms.

Yes it is, however, she has has grommets in which is supposed to relieve the glue ear. I have been researching and I have found things to suggest the pressure from the enlarged adenoids on the eustachian tube is continuing to cause middle ear problems.

I am wondering has anyone had grommets in but continued to experience glue ear symptoms?

My son improved after grommets and adenoids were done

Who did the original referral? GP or HV, my HV said they can push through hearing assessments if no luck with GP. But either way I’d be going back there asking for a retest.

It’s possible that she needs to learn how to listen (probably a better way of phrasing that), and slt can help with that. It may be that hearing has technically improved but there isn’t a corresponding improvement in comprehension.

@ENTnightmare just go private. We did the NHS dance with my son. Nightmare. Back and forth to ENt and multiple hearing tests in the end we went private had grommets in, adenoids ojt and tonsillectomy in tbe same 45 min operation. Very impressive and now my son has super hearing, and sleeps well. Game changing. Annoyed we left it until reception to do as he is now a year behind. Should have had done when 3/4

Poor little mite. I have no direct experience op, but in your shoes and if I had the cash I would 100% go private and have the adenoids out, as long as the private doc recommended it.

Has she been tested (MRI Now I think?) for cholesteatoma?(so?)

GP did original referral, I asked to be re referred to audiology but I couldn't get referral as I'm already under ENT care and they won't see us again until review which is almost a year away.

This is interesting, something I will pursue if it's not the adenoids. Thanks!

I think that is what we are going to do. I'm really annoyed as Surgeon wouldn't take them out initially and said to 'wait and see', well waiting and seeing isn't helpful when it is affecting development. I've tried so many times for a review for the consultants secretary to continually fob me off.

However, we are fortunate to be able to afford it, it's just really annoying me that we were so close to getting it sorted.

We had grommets tonsils out and adenoids removed and still had infections.
But touch wood she seems to be outgrowing the infections now as her body grows. We were told this would happen as the ear canal grows there better drainage.

We just saw an amazing ENT last week for my son's recurring ear infections (he does NHS but we went private). I was so impressed with him - if you are near London let me know if you want his name. We are trying long course antibiotics first, then he suggested grommets & adenoid removal if those don't work.

Yes, my GC and when children we know went to have them under the next hospital trust their consultant felt that the grommets wouldn't help. My GC is having antibiotics about half the time that she did pre grommets and still can't go swimming. But if her symptoms pointed to having her adenoids removed, then we would have given it go.

Hoping we have a similar outcome 😊

One of my DDs had glue ear, a different one with severe speech delay actually had auditory processing issues. She had an inverted hearing curve - so low frequency sounds were too sensitive, high frequency sounds she could barely hear.

Good news is that we tried Johansen Therapy when she was 3.5 on the off chance and it worked incredibly well and went from hearing of only 35-38 decibels in the high frequencies to being where it should be in the high teens.

Oh that's really interesting! I've never heard of that, I must look into it!

Did your DD with glue ear have adenoid problems also?

Not particularly but I'm sure they took them out at the same time?

She was a very very tall near 5 year old and having grommets completely changed her, so much more confident, went from near mute at school to putting her hand up. She clearly really struggled with her hearing prior to that.

It is really hard to do hearing tests on toddlers, which is why they may be resisting. I think DS was between 18 months and 2 years old when he had 2 separate tests done. One was with sounds coming from the side which didn't work because he kept looking to side to double check anyway.

Second one they had a bunch of plastic toys/figurines in front of him and the tester sitting in front of him covering her mouth (to prevent lip reading) and a nurse behind us with a decibel reader. She then gave him instructions such as "pick up the horse". So if they don't have the language ability to follow verbal instructions it won't work.

His hearing was quite bad and the only reason why his speech wasn't as badly delayed as it should have been is that I accidentally started treating him like a deaf child anyway, making sure he faced me when I spoke to him, over enunciating what I said to him and mouthing it clearly so that he could SEE mouth and tongue movement for the sound formation. (I had previously been involved with the deaf community.)

We had all 3 done, grommets, adenoids trimmed and tonsils removed. But DS kept cycling through ear, throat and sinus infections so we knew all 3 were affected.

BUT, as DS was under 3, only the head of the ENT was allowed to do the operation so we had to wait 6 months. They really don't like doing these operations for under 3s, and on the day only 2 of the children were under 3. (They performed the operations in age order from youngest to eldest so very clear).