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?

I just don't k ow what to do as on one hand doctors should know what they are talking about so should I take what they say and leave it or go with mothers instinct and fight for something to be done?

I would go back for a second opinion. It doesn't sound normal. Does he have a bottle lying down or dummy? I think both those things are thought to have an association with ear infections, so might just be worth considering.

I hope it improves soon, as it sounds v painful.

PS always trust your instincts

grommits are only for children with persistent glue ear causing deafness. They aren't for acute infections, no matter how many a child has.

I would go for a second opinion. My nephew had similar issues and was seen by a specialist who gave 6 months of low dose antibiotics to prevent problems and clear any infection in there. It's now 12 months since he finished them and he has had no more problems.

Agree a prolonged course of antibiotics may help, unlike grommets.

Get a referral to ENT, doesn't sound good, poor baby. My dd has grommets, but i'm sorry to say they gave her some bother (recurrent ear infections when she never had any before the grommets) but she was practically deaf due to glue ear so needed them. Defo get it checked out, but just a word of warning re grommets. Hope you get it sorted x

I think a referral to a specialist (ENT) would be wise - even if the ENT tells you the same thing, this is their area of speciality. The GP can treat current conditions, but I believe the specialist should be called in for chronic, recurring things...

Specialist might know of preventative meds that can help, options for pain management or grommits. As the GP doesn't put in grommits, I wouldn't necessarily trust their judgement as to when they are beneficial and when they aren't.

Demand one, you don't want your baby to have pain or hearing damage because the GP doesn't think you need it on the day - other doctors have said it is warrented.

You should definitely go back and make a fuss.

Persistently bursting eardrums can be a sign of Cholesteatoma (sp) and should really be investigated to rule that out.

Sounds like ds. He was referred to ENT and got his first set of grommets at 20 months. He didn't at that point have many perforations though. Just constant infections and glue ear. However when the first set of grommets came out he then had burst ear drum every infection until we had more grommets back in.

I was told if the ear drum bursts they need antibiotics with 24 hours.

Having said that I know my GP said to one mum who asked to be referred or grommets that "grommets are what keeps consultants in BMWs". I quoted that back to him when he initially said he wanted to refer ds, and he looked over his glasses at me and said "but some children benefit from them".

I would go back and ask. Choose your doctor carefully.

Make a note of things that might be effecting. How's his speech? (quite difficult as he's only 17 months to use that one) Does he hear you? Can he hear the TV? Does he respond to his name? Does his behaviour deteriorate when he's got an infection? I suspect his age is against him here. Some authorities don't seem to like to do grommets before 2 yo, and the above questions are much more relevant with an older child.

Agree with 2rebecca, grommets wouldn't be much use, never thought of it like that.

Google the guidelines for ENT referral in your area. Some places just say reoccuring middle ear infections for more than 3 months. If your DS' reoccurring ear infections meet the guidelines for referral for your local NHS trust, print them out, go back and show them. If he appears to be suffering from any hearing problems, he needs a referral anyway - repeat ear infections may cause damage to hearing.

You may need to ask the doctor to go through the notes and count how many separate episodes of ear infections he has had. Your DS may need an extra long / stronger dose of a different antibiotic as well.

You need to go back and request a referral. My dc both had dreadful ear infections. They were grommetted at 15months and 20 months respectively and it transformed their lives. DD has never had another ear infection.

DS subsequently had a perforated ear drum at 9 and again 6 months later. He was referred back to his ENT consultant. The consultant had a look and did some hearing tests. Because of the infections, the ear drum was not healing in a straight line. There is a little bone behind here and calcification can start to occur. If it does a much larger operation is required to prevent permanent deafness. DS had a grommet inserted in the affected ear to help the ear drum stay straight and prevent future damage. It is likely to be a genetic weakness, his paternal great grandfather was stone deaf by the age of 23 - in those days there was non help for his situation.

In my experience what school nurses and GPs say about ear infections, glue ear and perforated ear drums is very very different form what ENT consultants say. The former will say "overall there is very little difference between the grommetted child and the non grommetted child in the context of achievement at the age of 8 or 9". Fact: that is based on the population as a whole, not the individual child.

This makes me so cross and I will add in Austria (where DS's second perforation happened) it is routine to refer immediately to an ENT consultant to have the ear properly toiletted, to have antibiotics prescribed and to get the child in the system for futher investigations, treatment asap. Very very different to what happens here.

Get back to the doctors and ask for a referral as soon as possible - your ds is in pain, is suffering and you have every right to have potential structural problems identified as early as possible.

*farama. That's right that's what DS had. Bang on. OP needs to get this sorted.

GO back , and insist ..... Agree with what has been said....

Btw as an example the referral criteria in my area is more than 6 episodes of ear infection in 12 months - sounds like he's had that many?

you should get him to your nearest children's hospital, say it's an emergency and you will then be in a place where you are physically in the same building as the brains of the business

so you go through triage, then see doc, who will usually chat to his mate the consultant earnosethroat guy onsite

a long wait

but worth a try?

(i once had a gp overseas who basically thought my newborn had 'indigestion' but wasnt sure, but said, if your instincts as a mother tell you sthing is still wrong, then these are VALID (it's what wild animals survive on) and to take my baby straight to A&E at children's hospital

quicker than waiting for GP's to get their heads around it

your child is always in pain, so just go as an emergency patient

hope you are ok

I don't know about grommets vs. no grommets, my experience is based purely on having been one of those children who "always got these" myself, plus a bit of research when I recently had one again as an adult. But I would be inclined to push for a referral based on the following things:

-Firstly ear infections are sooo painful, and both ears together even worse, and 20 in 17 months sounds horrible. (Do you use a hot water bottle or similar, by the way? Helps a bit, though not always a lot...).

• Secondly, the hearing loss/tinnitus etc after a perforated eardrum can last quite a while, and it can be very isolating. In children especially, if this is happening regularly it can affect their development and social integration (says my googling). Certainly even as an adult I found it quite awkward, isolating and embarrassing being unable to hear people properly, and very weirding-out sometimes due to the loud Dr. Who noises my ear was constantly making for the first few weeks! So I would not want this happening to my child on a regular basis, especially once he gets a little older - making real friendships, starting school etc.

The worst that could happen imo is that the experts say, sorry, there isn't anything they can do - and then at least you've not lost anything, right?

as it turns out i am so glad to took my baby to emergency as she was seen within an hour, every organ checked, and every possible specialist was over her like a rash to work out what was wrong with her

Googled that cholest thingy but it sounds like that would only affect one ear? Both ears burst, normally one after the other.
He was exclusively breastfed, very rarely had a bottle and never had a dummy
Has had at least 20 burst ear drums in a year, would say at least 10 since Xmas.
Where would I find ENT referral criteria?

It can affect both.

And is more likely if a child has repeated burst eardrums.

Please insist on an ENT referral.

The hearing thing is hard to tell, he only says a few words and they aren't properly pronounced yet, doesn't appear to be hearing problems but how do you tell in a baby?

My ds1 had Cholesteatoma after a number of ear infections caused by him initially bursting an eardrum by poking a pencil in , silly boy. He had 4 operations to get rid of it and rebuild his inner ear. needless to say at the first sign of infection in Ds2 we were straight to the gp. we luckily got a great gp who clearly knew his stuff and like kids, he had us going back every two weeks for more antibiotics until he was absolutely sure it had cleared. never had another problem with him thank goodness as Ds1 really went through the mill.

NHS page on evidence for grommets

Interesting reading Pesto. I am still saying ds had 11 ear infections from 8 months to 15 months and spent more of that time on antibiotics than not on them. He started to look tired and pale. Nights were disturbed. On a six week course of antibiotics as the first line of treatment he had three ear infections. On the third we booked the grommets. We then had a happy child who did not have another ear infection until he was 9 years old.

dd had about 8 ear infections from age 1 until about 20 months. From December to March (20th the day her grommets were inserted) she did not sleep for more than 90 minutes and during that time I mostly slept in the nursing chair with her upright in my arms. The day the grommets were inserted she slept through the night. From that day she was a different child, she stopped crying, she stopped clinging, she started laughing and chatting. It was notable that the day after she sat in the car mesmerised and chuckling and making a ch chu, chuuu chu sound. We realised she was listening to and mimicking the birds.

I'm sure they grow out of needing them; I'm sure it saves about £1000 per child. I'm sure I wouldn't have let mine suffer as they were suffering for an additional two to three years. Our DC had a loving home and were at no risk of harm. I can imagine what could happen when a mother was completely sleep deprived, struggling, clinging on to a job and with a not very supportive partner.

I maintain the NHS line is propaganda for saving money. It was 16 years ago when mine were small and remains so today.