22 month old, ear infections and barely any words. Worried I’m failing her

[sickandsleepy]

My daughter is 22 months and has had quite a few ear infections over the last year (about six, always in both ears). The GP says ear infections are very common in toddlers, but I’m starting to wonder if they’ve affected her hearing and speech.

She only says about three words, although not very clearly - bubble, duck, book and some animal noises but doesn’t say mummy or daddy yet or anything else. She understands things and will bring us books or things she wants help with, but because she can’t express herself she gets really frustrated and sometimes hits or lashes out.

She’s had hearing tests which showed slight hearing loss and glue ear but they keep just saying come back in 3 months, and because of that I’m actually paying privately for her to see an ENT next week. I’m convinced the ear problems are part of why she isn’t talking much, but I can’t shake the feeling that I’m somehow failing her or missing something I should be doing.

Has anyone else had a toddler with recurrent ear infections and speech delay? Did things improve once their ears were sorted? I think I just need a bit of reassurance that I’m not letting her down somehow.

@VividDeer yes please I would appreciate that so much

Messaged you a name of someone in Bristol.

Surely if the NHS list is long (which I know it is, over a year) then it makes more sense to put the child on the waiting list sooner so they can get treated. He is not making sense. I wonder if he is trying to wait until your child is 3 so he can operate at his hospital and get his fee. If he refers you on to someone who can do the operation earlier or you get treatment on the NHS then he doesn't get any money.

@sickandsleepyim so shocked at this experience, it couldn’t be more different to ours.
i know Manchester is far, but if you bring her to Prof Bruce at the Spire then he will operate if she needs it - as you know, my son’s operation is planned before his second birthday. He listens, my son has had 1 ear infection that I’m aware of. Documenting an arbitrary number of infections is stupid, she has glue ear and her speech delay is affecting her day to day life to an extreme level. Hate that kids are ignored like this, imagine an adults communication difficulties being dismissed like this. What’s more outrageous is that you’ve paid for the privilege of being ignored in this way. Write a review of this person, and take your daughter elsewhere

Ask ENT to refer you to audiology. It’s pretty common for children to have temporary hearing aids while they have glue ear. I posted upthread about ways of supporting speech development on the NDCS website, this is the glue ear page. They are the major charity working in this areas and have reliable info www.ndcs.org.uk/advice-and-support/all-advice-and-support-topics/causes-types-and-signs-deafness/causes-deafness-and-hearing-loss/glue-ear

Sorry quoted wrong post!

@StacieBenson exactly, if it’s long then put me on it asap, that’s not a reason to NOT put someone on it?? I had the same suspicion about fees, because it just simply doesn’t make any sense the way he conducted that appointment. He ignored key facts.

@MrsC2018 I’m seriously looking into it because if it’s my only option then I’ll do it to have her get help. She’s almost 2 and isn’t talking, and he said audiology tests aren’t that reliable anyway so even though she had hearing loss it didn’t count. Also, my child needs to continue to suffer infections over and over again, not be able to go to nursery, miss out, just to tot up the infection count? It’s madness. I agree, absolute waste of money and time, but I’ll be taking her somewhere else to make sure at least I’m listened to the next time.

I could of written this myself a few months ago but at 27 months my son suddenly started to find more and more words as they go through a big development at that age .
we have new words everyday now , the pronunciation needs work and I put that down to ear problems .
Give it abit more time before getting too concerned

@WhatDurhamtaughtme thank you, she does see audiology but audiology were reluctant to look into anything like that even though she’s had glue ear present at both appointments and now at her appointment today too, I may give them a call and ask if there’s anything that can be done. I think someone mentioned up thread that hearing aids are difficult for glue ear because it fluctuates so much.

Hi, yes definitely. I had a 1yo with slightly delayed speech and terrible glue ear caused by endless ear infections that affected his hearing. We got grommets privately and the problem was solved. He is super chatty now. They removed so much gunk from his ears. If you can afford it, I would. Sorry you’re experiencing this!

We were at the Portland with Chris Pepper and he did the op at 17 months. Absolutely lovely amazing doctor.

We’re under audiology and have been all along, our referral to ENT came from the HV appointment at the 12 month check. In our area, even with the speech delay and glue ear present for 1 year (4 hearing tests 3 months apart each time) we don’t meet the threshold for an audiology referral to ENT for a consultant review and consideration for grommets. Audiology (for us) is just appointments every 3 months to confirm that glue ear is still present, them empathising how hard it is for him to have a speech delay and them discussing that they will refer for hearing aids in the next hearing test 🤦‍♀️
it’s infuriating.
I can’t imagine how you feel to be ignored from the private ENT appointment as well @sickandsleepyi also didn’t realise how lucky we are to have very few ear infections. He has a permanent cold throughout the year and has tonsils that touch even when not infected (he’s a keeper!) but has very little time off nursery for illness.
we paid an extra £150 at the appointment for them to do a hearing test for Prof Bruce to look at them and there and Adam, the audiologist did another test where I held a microphone on the bone behind his ear - it basically showed that my sons hearing is fine if you bypass the glue in his ear. He’s never had that test before either which they were shocked at 🤷‍♀️
I did an online contact form and they called me to discuss what I wanted and if they could help us before I booked an appointment, they might even know someone more local to you that will operate on 2 year olds if that’s the best course of action for her

My DS was exactly the same. Had grommets put in at around age 3 and was speaking full sentences within a week. He just couldn't hear anything.

Ask if they have an aural care nurse/dept attached to the ENT consultant. Eventually (after I admittedly burst into tears and told them I couldn't take any more) they got him in front of an aural nurse who pumped his ears full of antibiotics. A few weekly appts and the infection went and didnt return for a very long time.
The consultant said my son doesn't aspirate fluid as well as "most" people do which is partly the reason for multiple infections.

Also to add- id never seen so much gunk in my life. It was really bad.

When my son was little this was him, he’d talk but not words you would understand
He had lots of ear infection even Ouse dripping out down his neck.He got referred to ent dept at hospital where he was put in list for glue ear and grommets.

Dont waste your time getting antibiotics tell gp he/she wants testing for grommets needed

@sickandsleepy so sorry you had that experience with the private consultant. I would consider complaining because it’s not on to completely dismiss what you’re saying especially when there’s clear evidence. There is no way on earth he would willingly accept his own advice if it was his child. I’m sorry I could only recommend somewhere in London (like others my sons was done at 18m at the Portland).

I know they say that the issues can resurface later if operated on too early but I don’t understand why they won’t even put you on the list for NHS especially as it’s so long and your child is already experiencing some developmental delays as a result.

A PP suggested involving the HV, I wonder if attacking it from all angles might help. Essentially make yourself a nuisance until someone listens. Not ideal advice I appreciate. Hopefully you have more luck with a different private provider.

@hicketypickety oh he would absolutely not accept his own advice, it’s insulting! Currently I have her booked to see another consultant on Thursday just for a second opinion. She’s definitely completely behind on her speech and I know that’s a red flag for them.

The frustrating thing is I have the HV involved, but as soon as they did the referral to audiology they all but washed their hands of it all. Do you mean maybe ask them to write a letter or something supporting what I’m saying?

When my son (then just around 3) had glue ear and hearing issues the ENT consultant cleared the glue ear at the first appt, ordered an instant hearing test and prescribed low level antibiotics for two months to see if they made a difference, which they did. Then a follow up check up, then appointment made for adenoids removal because they were still swollen, grommets not needed as the glue ear hadn’t returned. Sounds like a useless ENT consultant you had I wouldn’t be accepting that, go elsewhere.

@sickandsleepy I can feel your frustration through the page 😢 yes I would ask if the HV (or perhaps nursery, though it may not be taken as seriously) to write a letter stating that she’s not hitting milestones XYZ and they believe it’s due to her hearing issues. My mum was a head teacher before retiring and I know she has written similar letters for children’s parents in the past - saying that whatever health condition was affecting their attendance and learning. It won’t be a silver bullet but it all adds to your case IYSWIM. I hope the second opinion is more helpful.

Even though you might feel like it it’s really important (especially if she gets poorly a lot) to remember by continuing to push and not take no for an answer you are categorically not failing her - quite the opposite in fact.

Op i am going to dm you if that’s ok

We found a private consultant to operate on my 1 year old last year to put in grommets (and remove tonsils and adenoids). We are in the south west.

He is also putting grommets in my 5 year old this year.

We have found the NHS absolutely shocking for both kids, especially audiology. Absolutely useless.

@hicketypickety that’s a good idea, I’ll see if they can help me out. I think I’m so frazzled by it because I feel like they’re acting as if I’m overreacting and making a bigger thing out of it than it is. But I’m sure I’m not? But I’m starting to doubt myself and that’s annoying me even more!!! Such a mess 😭

Just popping in to see how you're getting on with your search for an ENT that will actually help you.

DS had his grommets and adenoids done last week, the surgeon said that both his ears were full of thick fluid and his adenoids were bigger than normal. DS doesn't have any new words yet, but he's repeating after us a lot more than he was before his op, and very cutely he now whispers when we do too (which is new in the last few days). It hasn't been night and day, but he has noticeably improved in the last week.

Yep my DS. 26 ear infections in 18 months. Was hell for us all. His ears were so bad. They would discharge this awful crap. It was all during Covid too so help was very minimal. We ended up under ENT. They fitted grommets which sort of helped but don’t stop it. I ended up standing in children an and e and refusing to move until I saw the on call consultant. He ended up having his adenoids removed at 2 years old which then did stop the infections.

i was worried about speech too. We never saw a HV cos they stopped during Covid so I couldn’t take concerns. We couldn’t go to baby group due to Covid and when we could go out everyone had their face covered so he really struggled with speech development. When I finally go to see a HV when he was 3 she agreed re his speech and reference for SALT. We have been under SALT now for two years and his speech is much much better but it’s been hard for us all. He has a speech disorder as opposed to delay so has had to practically re learn words etc as what he was hearing wasn’t right and he couldn’t in early mouth movements and hear a variety of voices in speech development.

I would push and push hard to get the help you need. Early intervention is key.

@WhimsicalObsidian - thanks for checking in. I paid to see our local hospital's lead paediatric ENT who I didn't find before because he doesn't practice under any private hospitals, but you can pay to have a consultation with him and then he can add to his NHS list if he believes surgery is required.

He gave me the option of watching and waiting, long course antibiotics or for her to go on his list to insert grommets and have her adenoids removed at the same time - on examination he said her tonsils were large which means her adenoids probably are too. I chose for her to go on his list for surgery and I'm feeling very very relieved that at least she's in a queue now and at least we don't have to wait the initial time to even see a consultant. If she continues with the infections I'll be asking my GP to write and ask if she can be pushed up the list.

He did say that children with hearing loss do still begin talking at the same rate as those without, but don't pronounce things correctly, and that it could be more developmental than hearing which has concerned me slightly and don't know who to contact about it as the HV say they can't do any neurodivergence checks until they're older. She's on the waiting list for SALT.

Stressful!!!

@sickandsleepythat is a positive step in the right direction at least. My DS had grommets, tonsils and adenoids all done in the same op - must be a common problem! He also stopped snoring which was amazing (I presume as a result of the adenoids coming out). Fingers crossed that you don’t have to wait too long for surgery.

At least if your DD can have the operation then it will rule out hearing as one of the things impacting her speech development (and will stop the ear infections which is a positive in itself). It means you will have one less barrier in your path. You have probably already started but if not could you / nursery work on some makaton signs in the mean time to improve her communication? It might build her confidence too.