Baby perforated ear drum

[yentirb]

Hi,

Since March 2022 my 17 month olds ear had perforated 6 times. Each time there's periods of intense screaming for hours, pure agony and then it bursts and leaks A LOT of green and sometimes bloody, waxy discharge.

First time I went to A&E because I'd never seen anything like it, they explained it had perforated and it would heal by itself but if it continues to leak green they'd recommend antibiotics because it may come with a middle ear infection.

It's happened many times since, my GP practice will not put me through to a doctor, just the same nurse prescriber who on most occasions will not prescribe antibiotics for a middle ear infection (or any infection for that matter). The newest refusal was "are you sure it's not just teething?"

Each time I've gone to the walk in after getting nowhere with the GP. The walk in centres (two that see children in my area) are both on skeleton staff and will triage not treat. So they explain it's infected, please get antibiotics from your GP.

Now I'm at the point where it's happened again, I actually think he has little to no hearing in his right ear from it.

I've not got a specific health visitor i had one visit once, so I rang their office and was told
Someone would phone me back, I've chased this again on Friday and obviously will continue when they open. I will be ringing GP tomorrow again.

Walk in told me A&E is not suitable because it can be dealt with with GP. But surely, he can't go on like this? He doesn't sleep, he's not always in constant pain but when it bursts he's in agony. His ear smells infected, it's just cruel he's absolutely miserable. So I went to A&E last night and it was a 15 hour wait, he got seen after 11 (thankfully) and they said "it's perforated, not healed and looks inflamed" and advised me to see a GP Monday.

What the hell do I do I'm so upset, I'm really struggling. He screams and headbutts things and I don't know how to help him.

The nurse said "this is normal, some kids are like this" but to be in so much pain and not respond when I call him near his right ear is not normal.

Sorry for long text I haven't slept properly for a few days and I'm stressed beyond belief just looking for anyone who's experienced similar

Your baby is at risk of permanent hearing loss. His situation is absolutely not normal. You need an ENT referral. Can you afford to go privately?

Absolutely agree with the above. Push for an ENT referral. Put in a written complaint to the gp practice manager.

DS had this, do you have a cranial chiropractor specialising in children, they did wonders for DS ears, after treatment he never had another one, then we just went for preventive treatment. The treatment was never painful, more like a massage at the back of the head around the ears and DS was always happy to receive the treatment.

My DS had this, all with the same ear. I'm genuinely shocked that your gp doesn't prescribe antibiotics for it as standard.

After the 2nd perforated ear drum, my gp didn't even need to see DS anymore, I put through an econsult explaining it had happened again and they would prescribe ABs without even seeing him.

He grew out of it around 3/4. The gp explained to me that some babies naturally had narrower tubes in their ears which weren't good at draining, which lead to ear issues and a perforated eardrum. They said its normal for some babies and they should grow out of it as they get older snd the tubes get bigger.

However, they also said it was really important to have ABs everytime to prevent any infections that could cause permanent damage.

I would ring 111 today requesting ABs as per your A&E visit and then contact the practice manager of your gp surgery tomorrow with a complaint about how the whole reoccurring situation is being managed by the surgery and requesting an agreed process of what you should do next time it happens as he needs ABs.

Also ask about if an ENT referral is needed.

Good luck

Tbh I'd go and camp out at your GP surgery and refuse to leave until you've seen the practice manager and seen a doctor.

We had this - we went private for an ENT referral.

I cannot afford to go private, I'm barely surviving I'm a student nurse with no chance of going private otherwise I would

I'll demand to speak to a doctor, failing this I'll put in a complaint.

You can ask GP to refer you to ENT, be insistent. I am your son 30 odd yes on - I had reoccurring ear infections and have hearing loss both sides. I've had a number of surgeries to correct. I'm sure you are already, but make sure you keep that ear dry.

ENT referral is essential. The GP must refer you. Make a request
in writing also. If there is any way at all you can manage private do so and then be moved to NHS list. My ds had this and has barely any drum left now. There have been many knock on consequences
over the years. Do not allow the ear to get wet, even when it appears ok. Sympathies.

Another saying you need an ENT referal. Perforated eardrums are absolute agony.

Me and db had perforated eardrums all through childhood, into adulthood and we are both deaf in one ear. I know someone else has mentioned keeping the ear dry but its really important that you do

@kindlekeeper I can't, I'm a student nurse and I'm already struggling. We survive off DH wage and it's barely enough to keep us going and I already work bank shifts around uni.

Just an update, I had a telephone doctor appt. The doctor wouldn't let me get a word in edge ways, questioned me on the length of time and why I hadn't presented to A&E with my concerns? I explained I had, and 111 and walk ins on multiple occasions and with their own nurse at the surgery. She said she couldn't evidence this on her system? I said I had prescriptions, appointment cards (which I had to show work) for evidence she just said well I can't evidence it.

She said made me feel negligent, kept questioning and repeating what I said and twisting it. I couldn't even speak I just stayed polite and said goodbye while I gathered my thoughts out of shock.

DH heard the conversation on speaker, took himself to the surgery to follow the complaints procedure as the gp wouldn't talk to him. He said they kept telling him to calm down even though he is as calm as they come, no raised voice, nothing.

I went to A&E and DS ear has self grommeted? So it's burst to the point of a hole and that's why it's leaking constantly. They said everything I've done in the lead up to today was correct and the Gp should've made a refferral a long time ago.

A&E doctor made an ENT referral and told me she's seeing this a lot and advised me to make a complaint, contact PALS and change GP surgeries.

Why won't they refer you?

My sons used to burst a lot but not that many. He had congestion and had grommets for a while ( didn't help).

Anyways a referral was pretty easy tbh .. can you ask the Gp again

@boboshmobo A&E made the referral in the end, after the GP was awful, had me in tears after the appointment today

Ds was like this.

He had ear infections every 10-14 days from 10 weeks until his first set of grommets at 20 months.
The grommets came out about aged 3.3 years and then he had 8 burst ear drums in as many weeks until he had the next set of grommets.

I did get antibiotics as his never cleared up without it. He just continued with a high temperature and raging earache.
When that set of grommets came out (aged about 6yo) we tried no antibiotics and found that if he didn't have antibiotics his ear drum would burst, but if we can get antibiotics in quickly we could avert this. He then had more antibiotics.

He's 15yo and still gets 2-3 ear infections over winter. Our GP knows him and I phone up and leave a message saying he has an ear infection and go and collect antibiotics from the pharmacy within the hour. He hates antibiotics!!

What I suggest is play up the hearing rather than the infections. Our GP said "grommets keep consultants in BMWs" (but happily referred ds) because they don't tend to look at the infection and say grommets are needed, but they do look at the hearing. You want to show that his behaviour (esp as he's beginning to look at school), social awareness, speech, and other development is being effected by his lack of hearing. Ds was lip reading a lot of the time, which I didn't realise until ENT pointed this out.

Also there may be a waiting list for ENT, but if you go in the summer and he seems to pass the hearing test (ds loved hearing tests-they told him he was a pilot) then you may need to point out that he's worse in the winter. Ds' hearing in August was totally normal; by October it was down to 10% of minimum expected for his age one time.
I refused to be signed off when he got a normal hearing test in the summer, when he was 10yo, and I was right-the winter one again brought his hearing down to below 50%.

@yentirb that's terrible ! Why does it matter to them ffs ?

Some gp's are so awful !

I'm really shocked at your update op. I'm ragng on your behalf. Definitely a formal complaint.

I'm absolutely disgusted on behalf of you and your poor son. Appalling. My DS is prone to ear issues and I would have been livid if our practice treated him with such contempt. I hope you get this resolved.

I'm going to write a complaint tonight, ive never known such an unsupportive and unhelpful doctor. I work in healthcare and I would never ever speak to anyone the way she spoke to me.

DH thinks there's been negligence on their behalf, but they want to pin it on me rather than take accountability

In your complaint to the practice make sure you refer to your intention to also make a complaint to the British Medical Association. You’ll be taken far more seriously by the practice manager if you do

I’m glad to see that your baby has been referred to ENT. Ears are so important and he should not be having recurring infections. I have had problems with my ears all my life, including perforated ear drums and major operations. I have poor hearing too. It is because of my experiences that I was so concerned when read your first few posts.
The way you have been treated by your gp is nothing short of negligence. I think it would be a good idea to write a strongly worded letter to the practice manager and take it further if necessary. You need a different gp practice too.

The BMA is the doctors' union, so they aren't the right people to complain to/threaten to complain to OP. It's the GMC who deal with complaints against doctors.

I'd start with requesting a copy of the complaints procedure for your practice and follow that (it may be in their website). If that doesn't bring you a resolution, then NHS England is probably the next step. You can also complain directly to the GMC if you wish to do so.

I hope you get some appropriate care for your little one, it's outrageous that he's being left to suffer in this way. Is there anyone in the family or a friend who might be able to help you out with paying for a private consultation? For ENT you may not even need a referral letter, you can usually self refer privately.

Best of luck

Fight. My DD had this for a year and now has permanent holes & mild hearing loss.