Glue Ear/Ear issues in a 12 month old

[LetMeOverThinkIt]

Hi all,

We're looking for wisdom from those that have gone before us. Our son has just turned one. He's had repeated ear infections since November. Amoxicillin galore plus some others (eye drops but in the ears, ear drops, clarithromycin...) Basically repeating the same cycle. Screaming fits at night, ear drum bursts, go to the doctors who take swab and tell us Amoxicillin or another med will sort it, finish the course and the gunk stops. A week or so later rinse and repeat.

He got referred to our local hospital ENT and was told the wait was 6 months. However I phoned up everyday and thankfully managed to get a cancellation appointment which was Friday just gone. They've confirmed he still has infection present in both ears even though he had just finished a 10 day course of Amoxicillin. We've been told no more antibiotics for now as the ear drums weren't bulging and to use saline drops up his nose to try and help the ears to drain. Then watchful waiting for 3 months and if the issues persist they'll consider giving him grommets and will test if he can hear properly.

After a brutal night last night we're just completely done. He doesn't sleep, wakes every 40 mins to an hour. Sobs even when in arms sometimes. We do cycle through all the pain relief he can have (Paracetamol/ Ibuprofen). Fully expecting to see more gunk appear from his ears either today or tomorrow based on last night.

So my question is, is there anything else we can do to help his symptoms? I did ask the consultant this but got nothing other than the saline drops. Has anyone found tilting the cot helped? Pillows now he is over 1? I've read about ear/head massages? Willing to give that a go at this point! Is there anything else I can ask about either at our doctors or at the next ENT appointment?

He seems ok during the day, other than he occasionally hits the side of his head or puts his hands over his ears and gives a little moan. Any time sleep is involved he changes personality!

Any advice or virtual hugs welcome. Two very tired parents here!

We had this 31 and 27 years ago.

DS was grommetted at 15/16 months after 14 ear infections. A wee lad constantly unwell, very tired, on AB's and in pain.

DD at 20 months, the ear infections started later but I recall that from January 1998 to 20th March 1999 I dozed in the nursing chaor with her upright in my arms.

The NHS was not interested. The GP wouldn't even refer to ENT because glue ear resolves once the eustachian tubes grow and by 7 children with glue ear catch up to the average. That was particularly unacceptable because of the assumption that my children should or woukd be average aged 7.

We went private for both children. They were put on prophylactic ABs for six weeks before the grommet ops to give the drums a chance to heal although they didn't stop the infections. It was worth every penny, both children turned the corner in days, slept better and stoppes being persistently ill.

FWIW they both had extraordinarily well developed speech, that didn't mean they weren't in pain or that they didn't have glue ear. I shal never forget parkimg up after dd's grommets, that very day, and she looked up at the tree and giggled and chirped. She could hear the birds and clearly hadn't beforehand.

Long story short - you have to pay and things haven't got better.

A colleague's wife is presently an ENT Reg. Evidently it's a very lucrative specialism for the consultants because they are bisy with theor private practices doing what the NHS won't and therefore have a vested interest for things not to change. It's a bloody disgrace.

Both my kids had glue ear but eldest was particularly bad. It would affect his balance and he'd look drunk despite walking well at 9 months. He was considered profoundly deaf at 2 when he had his first set of grommets. He had infections every time the GP looked but he didn't often have antibiotics as they wouldn't prescribe.

In the end he had 4 sets of grommets, his adenoids out twice and finally his tonsils. He's now 6 foot teenager and doing well. It did leave him with auditory processing disorder so his hearing was fixed but his brain didn't always register.

Youngest had hearing aids from 5 yrs old and never had grommets as his hearing fluctuated so much. The hearing aid worked well apart from him flicking the battery out when I was telling him off so he didn't have to hear 🙄.

We did go privately for eldest for a couple of grommets just to speed things up otherwise it would have impacted school too much. Has your DC hearing been tested or was it not possible with all the infection?

We also took eldest to a cranial osteopath which helped all the junk in his head come out. His nose would stream for a couple of days afterwards but ultimately he needed the op.

@RosesAndHellebores We are very much at the "dozing in a chair" stage here. We've even got a travel pillow hanging on the chair to save our necks now! It very clearly disrupts his sleep however I've found that most of medical professionals don't seem to be concerned about it, or how the lack of sleep affects the entire house

I did approach one private hospital in the area when I was told about the 6 month wait. They were very helpful but said the age of our son meant that there were only 3 consultants on their books that would see him and that it was highly unlikely any of them would operate on him until 3. I was very disheartened but then I managed to get an appointment with the NHS so didn't pursue that further or check anywhere else. I think I'll pick up the phone to a couple of others to see if that's the new norm or not.

I have read about a longer low level dose of antibiotics potentially helping so I think I'll have a chat to our GP when we inevitably visit in a few days for yet another ear swab!

I know he can hear something, I can call his name across the room and he turns around. But it doesn't mean his hearing isn't affected, I hate to think he doesn't know what bird song sounds like! 😥

@HorseMadChild His hearing hasn't been checked yet, she said they would at the next appointment. However due to his age it'd just be one where they check his ear drum can vibrate freely.

Thanks both, it is crazy how the approach to glue ear seems to differ so vastly!

Ours were grommeted at The Lister Hospital, Chelsea and Parkside Wimbledon. The private hospitals have to have a paediatric nurse and paed anaesthetist on hand from a regulatory perspective. For that reason about 4 children were operated on during the same morning.

I don't think medics do care much about the impact of loss of sleep. One had to advocate quite hard. DS also had chronic asthma as a baby and I gave up work because of it. Very, very lucky I was able to but I absolutely could not function and I needed him out of nursery and away from infection.

Just adding - DS had the longer, lower dose of AB's. It had no effect and the infections still occurred.

Oh gosh- I feel your pain on the lack of sleep side! My little one has had constant ear infections since December- abx work and then a few days later we are back to square one!
my Gp keeps telling me I am just imagining things and over reacting 😑 then I end up in a&e with her- 2 weeks ago she was septic with it! I don’t know where to turn too- Im thinking glue ear but my GP is so dismissive I don’t trust their advice, plus I am well aware of the long wait lists! Ive had to remove her from nursery due to her never being there so I was wasting money, but now my job is suffering (i ironically work in the nhs)
I just want someone to examine her and tell me what the best thing to do is, even if it means going private- I feel like no one is prepared to give me an answer! Good luck with your son- I would say go private 100% and it is common to operate on his age- maybe research further afield x

@Becausemymumtoldmeso I'm sorry to read this! I'm thankful my GP was quite supportive and I didn't have to push too hard for a referral. Is there another referral pathway you could go down? Off of the back of your A & E visit for example? I don't understand how things can vary so dramatically based on region and who your GP is. Baffling!

I was very lucky that I picked up a cancellation by phoning every day on the appointments line otherwise I still wouldn't even have had a date for an appointment. He was referred urgently which was a 6 month wait, however its over a year for a routine one at my hospital ENT. The private hospital did say that even though an op wasn't likely, if I got him seen there, at least I'd have the knowledge of what was going on.

I think the consensus is they hope the children grow out of it before needing intervention. And I know the treatments are for the symptoms whilst they grow bigger and the issue (hopefully) resolves itself.... but that doesn't give any comfort or help to those of us cradling our in pain children and worrying about development, hearing, school etc. Just wish there was a magic spray that'd make it all better for them.