To march back to doctors and DEMAND a referral?

[jojane]

My DS2 is 17 months and since he was a few months old has had at least 20 instances of his eardrum bursting. There is no indication of an infection then at bedtime he starts screaming and screaming for hours, dose him up with painkiller but it doesn't touch the pain for him, he eventually falls into a fitful sleep and by the morning the ear has burst and lots of gunk has come out.
Last year when I took him to doctor I was told that I didn't need to bring him in every time it happened, made to feel like I was over reacting. So I don't take him in the next few time, over Xmas and new year he had both ears go and lasted a few days but being over Xmas no gp open.
Before Easter after a particularly bad episode I took him back in and saw a locum, who gave antibiotics (again) and said come back for a referral if it happened again. Lo and behold last week both ears went so took him back and was made to feel like I was over reacting again but managed to convince him to look into it further, more antibiotics and an appt to go back in a couple of weeks to have a look at ears when healed.
Last night an ear went again so took him back in and saw a different doctor as other is on holiday and wa sbasically told, nothing they can do, grommits dont do anything, he will grow out of it and won't affect his hearing.
After I came out I felt very angry and upset, it's not nice to see my baby screaming in pain every couple of weeks and surely they wouldn't fit grommits if they 'didn't do anything'?
My friend thinks should march back in and not leave until I get a referral, what would you do?

top tip for ear infections, ask the GP to prescribe antibiotic eye drops*, there is one type of antibiotic eye drop that works brilliantly on ear infections, almost gives instant relief, it defiantly works better than oral.

our middle DS has had on going ear problems since a tiny baby, despite having various operations, he still gets infections,

one of the specialists prescribed it, my GP was very impressed, and now prescribes them for others, it quite hard to get some GPs to believe you,

*Crprofloxacin. (ciloxan)

It's honestly been the most brilliant way of treating ear infection, I really recommend it.

My dd had repetitive burst ear drums and we tried taking her off dairy after something I read. Interestingly the only 2 times she has had an ear infection since have been the 2 times we have tried to reintroduce dairy. The gp says it is a coincidence and I acknowledge it may be but seeing as every time her ear drum bursts she is given antibiotics this means 3 days off nursery so I'd rather not give her dairy.
I would definitely ask for a referral if I were you.

My daughter had this from 6 months until around 4. Every cold she got would end up in burst ear drums and gunk everywhere. She couldn't sleep lying down when she was getting ear aches. She was in a lot of pain. She had various different things, including a low dose (5ml a day) of antibiotics. The thing that worked best was antibiotic ear drops, which we had to get from a specialist, so we did need a referral. They're right that grommets won't make much difference - I was told by the ENT that a grommet does is what the ear drum does when it bursts - relieves the pressure - but won't stop the infection coming. I was told that some children are prone to ear infections when they are young but grow out of them as they grow older as the ear gets bigger and there are less kinks for infection to get into. They are not necessarily right when they say that it won't affect the hearing. My daughter has a permanent hole in one of her ear drums as it never healed and has a minor hearing loss in that ear, being unable to hear low frequencies. It doesn't affect her greatly, but it is there. She is 13 now and has to still wear ear plugs for swimming and showers. She could have an op to mend it, but we were told that unless she's still having infections, not to bother as it often doesn't work and any surgery is a risk.

I'd ask for a referral and research the antibiotic ear drops - our gp wouldn't/wasn't able to prescribe them, but the specialist did and was the best thing. Also, neurofen/ibuprofen works better on bad pain/inflammation caused by infection than paracetamol does, so stock up on that.

For bog standard ear infections, the advice is that pain killers are as effective as antibiotics as they reduce the inflammation and the infection clears up on it's own - but when the ear drums are repeatedly bursting, then I think an ENT referral would be useful. My daughter had to put up with it for 3.5 years before she gradually grew out of it.

My son had repeated ear infections from 6 months to about 4.5 yrs old. We got him referred (actually we ended up paying to see a consultant as it was a 26 week wait on the NHS). The consultant prescribed stronger antibiotics than the GP and this cleared each occurance. His last infection was 4 years ago! I assume he just grew out of it. Yes get a referral. My son's hearing is fine now but I will say that his spellling is appalling and I put that down to not being able to hear in infant school and missing the important phonic sounds at that early age.

I agree with going back and calmly, firmly and politely requesting a referral to ENT. Mention that they told you they would refer you next time you came back, but they haven't got around to this yet.

No child should have to put up with this level of pain, and it is very unreasonable for the doctors to keep fobbing you both off like this.

DS3 was like this. I didn't see a doctor with him until he had a seizure from the temperature and was kept in overnight, they said not to give antibiotics (and we had all sorts of ongoing problems from ds1 having antibs for repeated ear infections so I was more than happy not to).

He grew out of the constant ear drum bursting about 2 and a half ish (which was the same age as ds1 grew out of repeated ear infections). I suspect they had dodgy shaped ear canals.

"They're right that grommets won't make much difference - I was told by the ENT that a grommet does is what the ear drum does when it bursts - relieves the pressure - but won't stop the infection coming."

But if this is true, does it matter if the infections still happen, if they don't cause the pain any more and don't affect hearing the way a burst eardrum does? I would have thought the grommets would be worth getting just for that if they do have that effect. I know I have been seriously tempted to stick a needle in my ear myself sometimes if it would let the gunk out and relieve the pain! Wouldn't it be better to get the same effect, but without the hearing problems and other hassles of a burst eardrum?

I wish I had grown out of them so young, but unfortunately mine kept on (though not quite as often) well into school age, and I think I still got occasional ones even as a teenager. The one I got recently was the first one for many years though, luckily.

You're going to hate me for this but...when I was a child I had exactly the same problem, ear infections about 15-20 times per year, eardrum burst each time. Mum was having to come to the school twice a day to clean my ear out as it produced so much gunk! There was even a picture of the hole in my eardrum published in a medical journal because of how close to a perfect circle it was!

Anyway, the doctor said the same to my mum, it will stop, I'll eventually grow out of it. I had it until I was about 7/8 and then they did suddenly stop. No other ear problems until I was about 25 and then I developed vertigo but this has since been sorted with some exercises designed to balance the fluid in my ears. Back to normal again now, thank goodness.

We still talk about it now, how severe and constant they were for years and then suddenly they stopped. We can't believe the doctor was actually right- we didn't believe him at all back then and sought second/third/fourth opinions, including from hospital doctors, but they all said the same. Doesn't take the pain/discomfort away, I know, and at least I was a bit older than your ds so I understood what was happening :( feel very sorry for you both

Your poor baby. The pain is terrible I know from experience. If it was me I would be begging for a referral.

I would also be researching and racking my brains to see what was causing it. Mucus build up causing infections? Whats causing a mucus build up? Narrow tubes? Colds? Food intolerances? Allergy? Etc

I don't know - I was also told that they can also fall out with lots of infections so then they stop working anyway. I think they're for when gunk in the ears affects hearing and unless the hearing is being affected they won't do it, because any surgery is a risk etc. In my daughter's case the infections didn't affect her hearing significantly so her speech wasn't affected and the doc didn't think it would have helped her. She is left with a hole that I wish wasn't there though.

2rebecca my DS (2) had grommets for persistent ear infections. he didn't have demonstrable hearing loss but I fought for him to have them for the infections. He's had the grommets in for almost a year and has not a single infection in that time (compared to 18 solid months of infections and about 20 separate antibiotics prescriptions)

I think the grommets have allowed the fluid to drain and not allow the right environment for infections to take hold. The consultant said it would be "like opening a window and letting fresh air in" and it has been.

OP. You need to insist on an ENT referal and fight for grommets. I think NICE says not before 2 but I kicked up a massive fuss and got them sooner. The operation changed our livess.

You need to get a diagnosis of recurring otitis externa (which can cause a lot of discharge in the absence of perforated ear drum) or otitis media.

Ear/eye drops only every work in an outer ear infection and in fact some antibiotic ear drops can be dangerous when the ear drum is burst.

There seems to be more and more evidence that grommets don't make much difference for kids with recurring otitis media and have their own risks, but I entirely agree with everybody who says you have every right to insist on a specialist opinion.

20 infections in 17 months?? Bloody hell. Your poor DS. Has he ever had treatment with nasal drops (to debung the Eustachian tube - google it: it allows the middle ear space to drain. Or NOT, when blocked) or decongestants by mouth?? Also yy to regular Ibuprofen when he is in pain.
I am a GP btw, no specialist, but would certainly refer when faced with that kind of frequency of problems. In anybody, but most certainly a child.

On another note: do go back and insist on a referral. But please don't go in all guns blazing. Use the broken record method: "I appreciate you feel I am overreacting, but I need to be reassured by a specialist in this field". Repeat as required .

V best of luck.

Sorry, should have specified, my son had some hearing loss, intermittantly, but not enough to meet the criteria (he had hearing at one of the three hearing tests he had during the three assessment appointments - impaired hearing at the other two). That's why the hospital originally said no to grommets but I kicked up a fuss and got my way (and was right )

Also while we were waiting for the op, augmentin was the only antibiotic which worked. We had more or less every one you can think of but augmentin on an extended (three or four week schedule) was the only one that worked properly.

Discharge can be swabbed and sent for culture which will tell you which bacteria is to blame (IF it is a bacteria, and not viral, in which case no antibiotic will make a difference) and which antibiotic said bacteria is sensitive too.
A swab when his ear is discharging might be another thing to ask for. It does not hurt (taken at the outer ear).

You need to see ENT as an outpatient. In our hospital, ENT suggest no oral antibiotics if it has perforated, but sometimes use ear drops of ciprofloxacin as the concentration in the ear is high but effects on the rest of the body minimised. Last few children I have seen like your little one were accepted by ENT without any fuss.

Do you smoke? I ask because I remember that there was something in the news a while ago about second hand smoke or stale smoke on clothes causing ear infections in children.

Otherwise next time it happens take him to a & e like someone else said.

When you do get seen by the ENT dr's please also ask about adenoid removal.

DS1 had repeated ear infections from about 4 months to 2.5 and had severe glue ear as a result-he had virtually no speech. They originally said that we had to wait and he'd grow out of it but it was awful seeing him like that so we used DH's medical insurance through work and saw a different consultant who said his adenoids were probably huge and therefore not allowing the eustatian (sp?) tube to drain therefore causing the ear infections and glue ear...he said that he usually takes adenoids out first and then do grommits at a later date if need be because they can often fall out whereas once the cause of the infections is gone then hopefully they shouldn't get them anymore. He actually had both tonsils/adenoids out at 2.5 and hasn't had an ear infection since (he's 7 now).

I remember when my brother was little he had recurrent ear infections , eventually one of the Drs came up with a plan , when brother had an ear infection he was given a course of antibiotics , say 7 days , my mum had to take him back to the drs on the 7th day , the dr checked his ears and prescribed 3 more days of antibiotics , my mother then took him back on the third day , dr checked his ears again and said they were now clear . After that he didnt have any further infections . The Dr said that sometimes the infection doesnt completely go away and it takes a little while for it to build up and become symptomatic again . So by re-checking the ear and giving a few more days of antibiotics the infection was cured .

He also suggested giving him phenergan on a night time if he got a cold . I think that was due to physiological reasons though, as brother was born with a cleft lip/palate .

I am intrigued as to how smoke can 'cause' ear infections , especially as apparently so many are viral . Are they suggesting that second hand smoke contains viruses ?

Thanks for all the info, need to look into a few things tha have been mentioned.
The other ear burst last night :-( so both ears have burst twice in less than 2 weeks

We don't smoke, never had not anyone they come into regular contact with.
I understand that grommets won't 'stop ' infections happening but from what. I can see they stop the build up of pressure and eventual bursting of the eardrum which is the painful bit for ds, I realise there isn't a magic cure and this is something he will probably grow out of, but there are things a specialist can do to make thing more comfortable and less painful for him,

Will ty and fine referral guidelines - anyone know where to get these from?

The doctor I saw yesterday is useless we saw him when ds1 was a few days old and came out in a rash (first time parents with meningitis flashing in our brains) he was useless, immediate and aghhed and said he had no idea what it was and spent ages looking in books (ok doctors don't know everything but they should project a bit of confidence, especially to nervous parents with a pfb! )

I get what you're saying about looking in a book. We had one of the doctors looking in the book every time to check. It panicked me slightly with dd1. Gradually I realised that actually it was a good thing, because she didn't just jump to the most obvious conclusion, she checked there wasn't anything rarer that she might have missed. It was almost a sign of confidence in her, she was confident enough to admit she didn't have all the answers. I find the registrars who anounce with confidence much more alarming now.

Babies with rash can be very difficult as they can't tell you if it itches, anything hurts etc. Ds also does interesting rashes quite well. Mostly viral, but occasionally with no known reason.

I think the statement I was given on grommets was "we don't guarentee it stops infections but for some children it has that side effect." It does for my ds.

I guess because ent are linked so if you are sensitive i guess it can irritate the whole lot.

I know from experience how you can get an ear infection from your nose (not from smoking though) - not nice as its right inside your head!!!

Surely you'd rather have a dr check in a book than NOT check?

I suppose I could start making it up as I went along in future .

Smoking/second hand smoke does not cause ear infection, but contributes to airway irritation which in turn causes swelling of the lining of various tubes (incl the Eustachian Tube) which predisposes susceptible people to recurring infections.

Info re glue ear with good illustration including Eustachian Tube