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?

Grommet insertion is performed by perforating the eardrum. They put a little hole in the eardrum and insert the grommet into the eardrum where it sits, keeping the eardrum open and therefore keeping the middle ear aerated.

I think it did improve after as she turned to more background noise then before e.g. a door opening. She has has a lot of heavy colds pre and post grommet surgery. In fact she was still recovering from one when getting grommets in (still v snottery).

Can a GP do a tympanogram test? I can't book an audiologist appt because we are under ENT care and ENT won't test until the review which is 9 months away.

GP has looked in her ear recently, they saw he grommet but didn't mention it was blocked. They also said she had a build up of wax in one ear too. The last time she had this she had to get it removed under GA as she wouldn't tolerate the micro suctioning without it

It's years now since my DC had their grommets, but I still remember the consultant saying that grommets alone are often useless unless you also take out the adenoids too. Things may have changed, but back then he left the DC until they were 5 before he operated because he said the risk of bleeding from adenoid removal was much reduced from 5 onwards. He said he would have done it younger if DC's problems with hearing had been severe enough to warrant it done sooner, but if possible 5 and older was always preferred.

Either way, grommets and adenoids together is the way to go.

@ENTnightmare No, the GP can’t do the test. I’m very frustrated for you that you cannot see Audiology. They would be able to check her grommets, hearing and issue hearing aids if her hearing is still down. Will there be a hearing test at your private appointment?

I am going to ask, I may have to be referred back under NHS as I don't know if that particular test is carried out privately.

I am going to stress that I need a hearing test, otherwise how do they know the grommets have worked.

I feel the adenoid and tonsil issues have really dampened the spark in my daughter, she has no life in her, it is almost as if she has depression (she's only just over 2.5). I realise how ridiculous that sounds but with her issues of tonsils/adenoid enlargement causing pressure, poor sleeps and possibly brain fog. She is just awake after a 14 hour sleep and woke up yawning. Her balance is poor, she is constantly holding her head (around her sinus), her attention span has gotten really short. She also vomits in her sleep occasionally and her appetite has gotten really poor and she is losing weight (used to be a brilliant eater) these are all signs of enlarged tonsils.

I brought her to an OT as I had some ASD suspicions and was told that it's unlikely as she doesn't fit the criteria apart from speech and communication (and running and jumping), everything else is age appropriate. The OT said it is most likely a vestibular issue causing these problems as it doesn't seem to be sensory or something like dyspraxia.

I am no expert but I really do have such a gut feeling the adenoids are causing a lot of these issues. I'm mentally exhausted chasing issues on my daughters behalf but we are too easily fobbed off by professionals at times (not undermining them as they have been life savers as well).

@ENTnightmare

She has auditory processing disorder, with an inverted heating curve. Too sensitive to low frequencies and hearing impaired for her age to high frequencies.

@AudiologistHere

Sorry for pestering you but is it possible for a toddler to have tinnitus? And if so can it be diagnosed? Reason I ask is that she frequently puts her fingers in her ears, sometimes moves her head from side to side as if trying to (shake something out) and sometimes holds her forehead like she has a headache.

Again it could be adenoid based pressure causing it. I just have to many questions

APD can't be diagnosed until later childhood - can it?

It could be a case of her hearing language for the first time and trying to understand it.

Well it can if you treating them for it and it works! It was a "by chance" thing.

NHS won't consider it until the are older. She was 3.5 at the time treatment started.

@ENTnightmare Ask away, I’m happy to help!
My own child had tinnitus associated with glue ear when she was a toddler - she had the language to tell me she had a buzzy bee in her ears. It can’t really be diagnosed any other way (other than them telling you).
The main symptoms that I see with regards to adenoid problems are mouth breathing, snoring and glue ear. ENT don’t tend to remove the adenoids unless there’s an additional reason other than just glue ear.
Putting her fingers in her ears could be tinnitus but it could be teething pain or something else entirely. Another ENT check of adenoids and tonsils would help to either confirm or rule out these issues.

APD cannot be diagnosed until later and even then, it isn’t something that is easy to diagnose. You’re right that her speech issue is likely to be something else.

@AudiologistHere

Thank you so much. As I said above the adenoids/tonsils are causing so many issues which are having an effect on her development. The sleep apnea due to adenoids (up to 20 secs of no breathing), mouth breathing 24/7, and the vomiting/appetite loss from the enlarged tonsils I believe are causing delays in cognitive development which obviously has an affect on speech.

Hi @AudiologistHere I have managed tl get a follow up appointment with the audiologist. My concerns are that she may not be hearing all frequencies, she would turn to a baby cry, a door bell or a pan drop but she very very rarely turns to voices unless I should really loudly.

I am aware this could be behavioural but is there a chance it could be frequency related? I know @RandomMess had a similar issue with her daughter that she has shared on here.

Also, if the behavioural test isn't conclusive is it worth asking for the ABR test or is it really uncommon to do that at this age? Thank You in advance

Might it be behavioural because understanding what voices say is difficult due to previous hearing loss and playing catch-up on differentiating sounds, and therefore times them out?

My DS's teacher was adamant we have him tested for absence seizures due to him just "tuning out" during class. Turns out he was tuning out because the concentration required to understand verbal information was so high due to his brain not knowing the difference between similar sounding letters that he just shit down periodically.

Caused by partial deafness in his formative years.

How did you remedy it @OrderOfTheKookaburra

Time and a good teacher. Some tutoring to give him his confidence back (thanks to the cow of a teacher that criticised him openly).

Some speech therapy if you can. He was supposed to have the speech therapy but it was never provided. After I hit the roof the speech unit provided DS's infant school with the packs and they put together little groups that needed help with those sounds but wouldn't have qualified for actual speech therapy.

It's of TLC and reassuring him that it would get better.

In all honesty the biggest thing that helped was moving to Australia where state primary schools don't push homework etc as much, and due to age differences he repeated a year. That gave him the breathing space.

He's now one of the top students in math and science. Still doesn't love English. Does read a lot though.

The other thing is you speaking very clearly to her, slightly over enunciating words and slowing your speech down. Get her look at you when you speak to her so she can see as well as hear the words being pronounced.

Be as clear in your speech as you can.

Read to her. Use audio books that she can read along with. She needs to see and hear the word at the same time.

But also, time out. She will absolutely need down time so make sure you don't overload with out of school activities. Really good sleep environment - her brain will be processing so much in her sleep.

@ENTnightmare I'm pleased to hear you have a hearing test coming up. Although there are different issues that can be related to hearing, it isn't possible to test for these in a toddler and really, the simplist answer is often the most likely.

If your child passes the hearing test, they will have heard a range of frequencies at a quiet level and therefore, this should suggest that their lack of listening to you is linked to behaviour and not hearing. This could be within the normal range of not listening when engrossed in a task, or more of a problem such as those experienced by children with additional needs. Passing the hearing test will mean that your child CAN hear your voice. They may not understand what you're saying but this is more likely linked to behaviour and development. Try not to get bogged down in wondering whether there is a frequency they can't hear to explain their difficulties as this really isn't applicable to a child not responding and is more likely an issue in a child with a particular pronunciation issue or problems listening in noise.

ABR testing is usually reserved for children who cannot be tested behaviourally at all. It is normally performed under GA. I would avoid this test if your child is responding to the sounds; it won't provide additional information.

Feel free to send me the hearing test results and I can fully explain them if needed. Hope it all goes well x

@AudiologistHere apart from when the audiologist says they've passed but in reality the child's hearing is very poor for their age which is then a huge barrier to them learning to speak

My DC was at 38 decibels for high frequencies at 3 and they deemed that as ok when it should be more like high teens

@RandomMess Sorry you've had a bad experience but hearing ability fot a child's age isn't a thing. It's either within normal limits or not and this doesn't vary by age. Hearing is measured in 5 or 10dB increments so a hearing level of 38 wouldn't be a thing.
Audiologists are being given a bad rep here.

@RandomMess not sure what you mean by 'high teens'. Hearing is within normal limits at 20dB HL or quieter at all frequencies or at 25dB HL in a sounfdield.

Well that's even worse because my DDs hearing was up at 38 decibels and yet she passed her NHS hearing tests both times!

@RandomMess but hearing isn't measured to that scale? It would be 30, 35 or 40.

This was a private hearing test so her hearing was assessed as being between 35-40 I guess 🤷🏽‍♀️ but according to NHS it was FINE and the reason she talked like a hearing impaired child was nothing to do with hearing 🙄

Well, NHS and private hearing tests are the exact same test. It's more the management of the hearing problem that has been the issue. Hope things are better now.

Well yes the NHS team didn't do their job properly 🤷🏽‍♀️ fortunately after private APD treatment she has near perfect hearing curve unlike the distorted one she did have.

The same team similarly took 3 years to decide one of my older DC needed grommets which once done transformed from selective mute to chatty and interactive.

Zero faith in them.