Recurring ear infections- enlarged Tonsils Adenoids No operation until 3

[Overtherainbow202]

Hi, I am new to mumsnet. Sorry for the long message. I have been reading lots of older threads relating to my topic and have got some great insights into my DS current issues. I have a few questions and would be great full if anyone has any insights or direct experience of having a child with recurring ear infections since 15 month old now 2 & 7 months back to back antibiotics. We got grommets fitted at 23 months he was not responding to his name constantly pulling at ears in pain hyperactive head banging poor sleep. We thought this had solved all problems we were wrong he continued to get upper respiratory infections a constant dry cough stopped eating sleeping trouble swallowing. I went back to ENT who was less than empathic and basically couldn’t wait to get me out the door said DS had allergies and prescribed antihistamines. I left deflated knowing there was something more possibly adenoids. Another 3 months later a burst ear drum and a really miserable toddler I pushed with A&E for some X-rays and turns out he has adenoid tonsilar hyperthropy chronic rhinitis sleep apnea and needs surgery. His development has been significantly impacted by this he is speech delayed and his general communication is also behind. There is some questions now on if his development delay is caused by his medical difficulties or if there is something else going on like ASD. We want what is best for our DS so will explore everything to rule in or out. One last thing we have been told we cannot get the surgery until he is 3 which I understand there are risks and we certainly wouldn’t expose our DS to unnecessary surgery but he really is miserable sick nearly 3 weeks of every month is there certain circumstances that it can happen a couple of months before their birthday? Really appreciate your help guys!!

Hi OP. I have some experience of this. My daughter had her tonsils and adenoids removed for sleep apnea and frequent ear infections just after her 4th birthday, however, there were children younger than 3 getting the operation. I believe this is because it was a large children's hospital with an A&E department. I believe the rule about not being able to have it done prior to age 3 is for hospitals that don't have A&E care or anaesthetists able to assist in those under 3. Could you ask about this and explore having the operation at another hospital? Your other option is to go private, but again, I think you'll struggle to do it under age 3.

Thank you @fedupsweetpea for your reply. We have to go private as the wait times to see a public ENT is over 3 years for initial consultation and that is without the wait time to have the surgery done. I can see why the private hospitals would be reluctant to do it because of risks and not enough staff if anything should go wrong. I suppose we are just desperately trying to get a solution soon as he is so poorly most of the time and I don’t like having to keep giving antibiotics. It’s hard to watch, but we will just have to wait and manage as best as we can.

I really feel for you, we have been there 😓 it's awful. We were in and out of hospital every time she had ear infections as she would have severe retractions trying to breathe as soon as she fell asleep. We were waiting over a year for help but wait times weren't 3 years. We went private for our initial consultation with the surgeon we wanted but luckily our nhs funding had come through for the op so he just moved us straight to his caseload. It was then about 6-8 months wait for the op. This was pre covid though. You really have my sympathy. If it's any consolation, the difference after the op was night and day. My daughter too was on constant antibiotics for ear infections. - she hasn't had one since & shes 9 now. These days they don't tend to take the whole tonsil out, the tend to sort of shave them right down to the bud, but that can result in them growing back, which is what happened to us 🤦🏼‍♀️ (she's had tonsillitis since!!) assume adenoids have too, but they've not grown back enough to cause problems. The surgeon said her adenoids were absolutely enormous so it was good getting it done!
Any questions or support I can give, just ask. They were dark days & I remember them too well xx

One of mine had tonsillectomy and adenoidectomy at just over 2 and a half. Started getting tonsillitis at 10 months and it never really went away. Hearing issues, constant pain, faltering growth, blue/grey appearance all the time, then sleep apnoea. Tonsils were grade 4 and partially blocking airway

However another one of mine started the same way but never got apnoea, and had periods in the summer without symptoms. So we were happy to watch and wait, then by 6 or 7 just had tonsillitis or ear infection once or twice a year.
In my view tonsils might be more important than we think for immunity, but it is a balance. Child 1s whole life was miserable and all they knew was being tired and in pain. Once tonsils came out, we had a completely different child.

Hi @Cuckfancer I agree with you on weighing up the pros and cons of the op. I definitely think it’s an operation we would not consider unless absolutely necessary and ENTs will not do it either unless it medically warrants it. We took DS to a different ENT for second opinion after we had the X-rays done in A&E and he said the same thing tonsils are suppose to protect the kids immunity but in his case they are doing more harm than good like you describe with your first LO. It is hopeful to know that the difference after surgery is so quick, very reassuring to hear.. We will just have to wait and manage it until he is 3.

My dd had lots of ear infections when younger which tended to slow down by the age of 3. By time she was 4 we were really not getting them at all, but this was the start of covid. Her teacher picked up she may have hearing loss due to the way she said words (start and end missing). We went private and she was right. That explained her delayed speech. She did not have delays otherwise. She has had 3 rounds of speech therapy and now discharged. She was referred for op for grommets and to look at adenoids. They said tonsils were fine.
When they did op in August (5 yrs 9 months) she didn't have any glue ear so they didn't put in grommets but said adenoids were massive! So they were removed. She did have sleep apnea as well. I'd say her sleep has improved. We have just got over an ear infection and burst ear drum. Has no hearing in that ear now and GP said looks like glue ear which will take 6 weeks to resolve. At her review follow up from surgery she was already at 10% conductive hearing loss. She has never seemed sicker since having her adenoids removed. Catching everything and taking longer to recover than anyone else in the house. I'm not sure in balance it was worth it for us. If they offer anything further I am not convinced I would take them up on it. And I was the parent who phoned monthly looking a cancellation for surgery.
We have another follow up appointment sometime this year.

Oh no @Sleepwhatsthazzz that sounds really tough especially as you got the surgery to help with your LO. I am sorry to hear that. I think maybe that’s why the ENT is waiting until DS is 3 as you say things can settle down for them. I can totally understand why they would wait. For our DS he has been on 16 antibiotics over the past year and half has spent 3 weeks out of each month with a chronic cough unable to eat and his hearing and development affected. Despite having grommets in he continues to get ear infections. At his development check it was suggested we should get him assessed for ASD due to his lack of social interaction with his peers in crèche and as he is not thriving developmentally. For us between his medical difficulties and the questions marks over his development we were so worried exhausted and upset. I contacted a private psychologist last week and she kindly advised us to wait until we get his hearing/ throat issues resolved first before considering an assessment. He had a hearing exam recently which showed he had fluid again in his ears and his hearing will continue to fluctuate. Either way we just want closure and to move on the absolute best case scenario is that everything does settle down by itself🙏🏻. I hope everything works out soon for your DD x x

@Overtherainbow202

Your story sounds so like mine. Chronic ENT issues, developmental delay, question over ASS (for communication & social only). My DD has also got grommets in for glue ear but not adenoids/tonsils out - despite tonsils being enlarged and everything pointing to adenoids also being enlarged.

Just wondering if you have gad any developments since? Do you feel hearing is still impaired (because of adenoids/tonsils) despite grommets being inserted?

My son had grommets at 18 months and adenoids removed due to recurrent ear infections and snoring. They were constantly ill up until this point even had febrile convulsions when he got ear infections. They asked on the day of the grommet operation if he suffered with his tonsils (he didn't at this point) as they would have taken them out also at the same time. Within weeks of having adenoids out and grommets in his speech improved and he began to walk more confidently (he only started walking at around 17months, I now think it was delayed due to all his glue ear problems). About 6 months later he started suffering with his tonsils as we were still under ENT he had them out a few months later I think it was just before he was 3. Since then we have had very little problems with his ear nose and throat other than the odd ear infection here and there which has cleared up quickly and not been as painful for him. I'd just get on at the doctors and ask for the surgery ASAP.

@ENTnightmare Hi there I set up this thread as @Overtherainbow202 but for some reason my username did not save to my account. Anyhow i do have some updates and not very positive I’m afraid yet. I contacted another private ENT in December he prescribed a preventative antibiotic for 2 months he had a breakout infection Xmas week and needed a regular antibiotic. He had a hearing exam done also in December but would not fully cooperate as his ears are so sensitive and sore it showed fluid in his right ear and his hearing is likely to fluctuate. He also had an at home sleep study completed over 4 days we had an appointment on the 3rd of March with ENT and approx 2 weeks off the preventative antibiotic. He said the study showed no significant sleep apnea so therefore no need to do surgery and that DS would most likely grow out of this. I explained I feel there is something still not right with his ears etc he replied that it was more likely to do with frustration as he is most likely on the spectrum, I disagreed but it was to no avail. I left yet another ENT feeling frustrated and angry and no closer to a solution. A week later I was back in GP the infection came back 5 days after that I ended up in A&E DS was in agony the antibiotics not working. Explained the history to ED doctor and that I was encouraged to find a general pediatric doctor as he might have a autoimmune disorder the ED who is a Pediatric doc said my DS is too healthy to have a general autoimmune issue and it is a local issue to ENT area. He examined ears and they were red and bulging. The only thing he could do was prescribe a strong targeted antibiotic for ENT issues to try help DS until we have an appointment with a public ENT consultant on 28th March in the same hospital- he will send over his notes from that night. I will be advocating strongly for a proper solution and will not be fobbed off any longer. He has spent that last year and half nearly in constant pain miserable and failing to thrive developmentally. I spoke to psychologist who said we need to get his Ear nose throat issues addressed before you would get an ASD assessment or even speech and language- how can u expect to make a clear decision when there is so much other noise going on and how can u expect him to engage with a SALT if he is in pain and distracted and possibly struggling with his hearing.

I can keep you updated if you like on the latest appointment? I am based in Ireland and I know there is strict rules on surgery under 3 I believe the UK is the same. However, I have encountered some mothers who had their DC surgery under 3 depending on circumstances. I feel my DS is a right candidate for surgery to give him back a better quality of life. I would keep pushing and not accepting no and go with your gut. I hope this helps x x

@Hopeful202

Your story sounds so familiar to mine. Do you mind if I PM you?

Your poor DS.

My daughter had tonsils and adenoids out just before she was 3. She had significant sleep apnoea, some infections but nothing like your DS.

The adenoids did grow back (a known risk when they are removed early) she had them out again aged 5.

ENT are horrendously busy, but please keep at them. The improvement from both operations has been huge.

Hi @ENTnightmare of course send a PM x

@babysoupdragon2 Thanks for sharing, it is comforting to know that your DD saw huge improvements in her quality of life. The issue i seem to be having is that I have not found an ENT that is prepared to offer surgery despite DS history. Hopefully my appointment next week will have better outcome.. He needs a breakthrough at this stage.

Thank you. Sent xx

Hi @Hopeful202 did you have your follow up appointment yet?

@ENTnightmare Hi yes we did have DS first public appointment. We established that he no longer has a grommet in the left ear and that would explain the horrendous pain he was in two weeks ago. As there was no active infection in the ear it was deemed unnecessary for him to warrant a grommet to be inserted. He had hearing exam on the day and it showed no fluid and his hearing was okay. I feel I am knocking on a closed door. The hope is he will grow out of it, i need a record of the amount of times he presented to the GP A&E with ear infections and has ordered a sleep study. His old chronic and persistent cough is back. Completely understand the reluctance to surgery but he continues to suffer. Will have to manage as best as possible and see how it goes

@Hopeful202 sorry I realise this is an old thread, just going through something similar with one of our twins. How have you got on?

@GraceAndPremTwins Hi I had another public appointment with different ENT on the 18th of December and he agreed he needs his adenoids out and new set of grommets put in now we have to wait for the procedure it could take up to six months but I am hoping he will get a cancellation. I called private ENTs too and their wait list is over 8months to see ENT and then would be longer to get the surgery. So will have to wait it out. This winter hasn’t been as bad as last year but he is still getting infections. At least we know now he will be getting it done soon.