Repeat infections

[EeGBee]

My son (2 and half) has repeat ear infections with effusion and a burst eardrum in his left for the last 2 years.
He has been hospitalised twice - the second time due to infection from his ear going into his skin causing scalded skin syndrome. Two hospital stays on IV treatment for 5 days at a time. The 2 bacterias are resistant to most antibiotics - the only oral antibiotics that are advised is co-amoxiclav. He is under an ENT consultant and his immunity has been cleared by immunology for underlying issues. ENT advised there is no reason to do grommets because he has no ear drum in his left. His ear is kept dry - we have ear plugs & headband for water protection.

I keep getting told this is "normal" children get infections. We haven't had a month clear of infection for nearly 2 years. This is entire childhood in pain, on and off antibiotics, in and out of hospitals and doctors.
I understand children have ear infections and that it does go away with age. But then GPs / ENT also say that the swab is growing so nasty strong bacterias. So it seems contradictory.

So here we are this month onto out 3rd week of co-amoxiclav and the swab is still showing heavy growth of 2 bacterias (same as always) and yeast. GP advise continue with antibiotics despite this being our 3rd week with no improvement. His ENT can't see him until end of the month. Blood work has been requested but again can't he done until middle of April.

Has anyone had similar experiences? Is there anything that I am missing that I need to push for?

Thank you - tired mum battling health professionals for someone to care.

Ds had ear infections roughly every 10 days from 10 weeks old until he had grommets at 20 months.
When the grommets came out he then had 8 infections in 2 months and they put more grommets back in.

But the grommets weren't done because of the ear infections - that can be a nice effect of them, but it's not guaranteed. They're done because of hearing loss. Some children find that the grommets make no difference to the infections, which will be one reason why they aren't keen to do them for your ds.

I'm assuming he's had hearing tests.

Thing is we did pretty much everything and nothing stopped the infections except the grommets.
I would query the no ear drum in the ear. Obviously a grommet can't be done, and would be pointless, but it also means that he probably has no hearing in that ear. It should on the minor positive side mean that that ear isn't painful as the pain is the build up of fluids behind it (which is why grommets can help). Ds used to find if his ear drum burst then the pain went pretty much immediately.
They may mean it's damaged badly, so you need to know if this is a permanent thing or if it may regenerate. If it's badly damaged, but they think it may recover enough for hearing then that may be why they're reluctant to put grommets (which do damage the ear drum further) in, but you could ask if it's worse for a grommet or the ear drum to burst again.

The positive side is that he should grow out of it. Ds was unusual in that he was early teens before he was mostly out of infections (at 17yo he still gets occasional ones) but they say almost all have grown out of it by 8-10yo.
It's also good news in that we're coming into summer, when the infections normally improve (Ds at one point was told he had perfect hearing in August, by October he was back to 10%) and you may find that next year, having grown a little he is much less susceptible to them.

My advice would be to fix more on the hearing side (especially if there are any speech concerns) because they will be more inclined to intervene if the lack of hearing is causing issues because they normally do grow out of the ear infections eventually. (no help now, I know)

Thank you for reply and information on your experience.
He has had 1 hearing test to which it was reported that it was "acceptable". He had start of an infection when this as done. But ENT did not seem concerned about his hearing despite my own concerns.

We all believe (nursery included) that his hearing isn't what it should be, if he is in a busy environment you have to gain eye contact before speaking to him & his speech is much further behind that other children around him at a similar age. He knows basic Makaton to help him say what he needs / wants. We taught him busy when his infections were becoming an issue.

ENT will not operate on the ear drum until a minimum age of 8. Because the graft to repair the drum will fail as he grows. Which I can understand but this certainly does not reassure me for his hearing and speech development.

I'd like to hopeful about the summer but the ear & skin infection he was hospitalised with was July last year.

My next step with ENT after speaking with another parent - their son of the same age having the same/ similar issues. They are looking into possibility that meconium at birth could have caused the ear issues. After some research I have found that it could have caused build up of damaged tissue in the middle ear which can cause reoccurring infections.

Thank you for your post 😊

Thing with glue ear is the hearing goes up and down.

So it's worth going with a report from nursery saying he isn't hearing in a busy environment and concerns about speech when you next see ENT.

With ds as well, I didn't realise how much he was lipreading. He had this cute little habit of patting my cheek when trying to talk to me, and I assumed it was to make sure my attention was on him rather than big sisters. ENT pointed out this was turning my face to lipread.
He was good at it without any attempts to teach him. Did you know a lot of people mouth their PIN number when putting it in the card machine? Followed by ds cheerfully saying "Your number is 1234..." went down a storm that one. 🤣

Write down any time you do something different because of his hearing. Like getting down on his level to talk to him (I did that a lot), and if he says he can't hear, or wants the TV louder etc.
Anything he doesn't pronounce right take a note (some will be age appropriate, but ds came home from a phonics lesson at school to tell me excitedly that ch and th made a different sound. He'd never heard the difference, so no wonder he didn't say them differently)

Put it back on them, your concerns on his development due to hearing. How are they going to help him.

Also is he off balance at all? Might be worth asking nursery. When ds had burst eardrums he was much less likely to fall or overbalance.

I understand the concerns on mending the eardrum, but that's a long time to wait with little hearing, without the concerns that come from having it. Ask for advice to help in the meantime. They may (or possibly won't help) suggest a hearing aid. Ds was keen instead of his 3rd lots of grommets, but they didn't suit his situation.

I'd also ask why they can't do just a grommet in the better ear, to protect it from multiple burst drums, and to keep his hearing.

My GP used to say that "grommets were what kept consultants in BMWs" but actually for ds (and the GP agreed, in fact he pushed for them for him) they made a huge difference.