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General health

11 month old with recurrent perforated eardrum - help!

24 replies

mears · 18/12/2004 09:13

I am looking for help for a colleague and hopefully prospective mumsnetter.

I have just finished night shift and said that I would start a thread here to see if anyone else has had this experience with their baby.

My poor colleague is emotionally and physically drained looking after her 11 month old DD who had had recurrent eardrum perforations since she was 6 months old and it has happened again. Her DD is obviously distressed and cries a good deal of the time which is extremely draining for everyone DD included. She is waiting for an ENT appointment and has been told the earliest will be April 2005. The GP has not prescribed antibiotics this time even though pus is draining from the ear. I have suggested getting a swab taken to make sure it is not an infection that needs treated.

Could craniostopathy help at all be helping drainage from the ear?

Could you bump this thread to the top throughout the day so that my poor colleague can find it as she learns to navigate round the board. I am sure someone out there will have some helpful advice.

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mears · 18/12/2004 09:26

This link is quite iformative. Click here

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mears · 18/12/2004 09:35

am off to bed now.

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TinselTamum · 18/12/2004 11:06

I do so sympathise. I don't know if I have anything very constructive to say, just sympathy and my experience, but at least it will bump this discussion.

My dd was just the same- her eardrum had perforated about 6 or 7 times by her first birthday. When she was hospitalised for something else at 11 months they had all the medical students coming to look at her ear because it was such a perfect example of a hole in the eardrum. I have to say, I'm afraid, that it continued unabated until she was 2.5 (although never as bad in the summers) and then slowed down until she was 3. Since then it has only happened twice, at 4.5 and now at 6.5 (her ear is streaming as we speak, and she's in a lot of pain). We weren't referred until she was 2.5 when it was already getting a bit better and the advice was to wait as so many children get better as their tubes get longer. Grommets would have been the only possibility, but she had outgrown the need for them by the time we went back when she was 3.

The advice I was always given was that she should be given antibiotics once the eardrum had perforated to keep it sterile while it healed, and that's what we did. However, I was talking to the doctor on the phone yesterday about her current infection and he said he's just read some research that suggests that even this is not necessary. He prescribed some for her anyway, and certainly if you think about experiences like SenorApostophe's, when her dd got mastoiditis, a blanket ban on antibiotics doesn't sound sensible. I waited varying lengths of time over the years before taking dd to the doctors, and she alwyas got better within 12 hours of startings her meds regardless of how bad she had been before, so I feel that they did help her. I would agre with mears about getting a swab done, and also mention that amoxycillin never worked, but Cefaclor always did.

We never tried cranial osteopathy, but I would have tried anything if I'd thought of it- it is so unbelievably exhausting dealing with all those nights with a child in a lot of pain.

The only positive things I can say is that a) they do grow out of it (but not much comfort at the moment) and b) dd's hearing has not been affected.

Mears' colleague- if you're reading this do have a go at posting and I'll keep my eye on this. My sympathies.

Jimjambells · 18/12/2004 12:06

DS2 was prescibed antibiotics for a perforated ear drum a couple of weeks ago- however I have since found out that recent research (don't have the reference- could try and find it) shows that it makes no difference to outcome and can actually make infections more likely to return, and make the development of glue ear more likely. That's apparently why so many GP's are now reulctant to prescribe. I did give him the antibiotics (prescribed by a locum0- I would have had more confidence in my own GP as I know he isn't keen on routine use of antibiotics) but next time probably wouldn't unless he got very ill with it (but this is getting similar to the other thread). Could a doctor reveiw her case every couple of days to ensure that antibiotics are not needed? I must admit I am blase about most things, and very anti antibiotics unless very poorly- but I still was worried about the perforated ear drum (I would have been happier leaving an unperforated ear infection- even if he had actually be more uncomfortable- really didn't like the fact it was perforated).

Would recommend in the long term trying cranial osteopathy and/or also seeing a homeopath. Both can have good results with ear infections - and are safe to try anyway.

mears · 18/12/2004 15:39

Thanks you two .

I am up now and will keep bumpimng this thread so that it is easy for her to find. If anyone else does have experience (good or bad) please do post so that she realises she is not alone.

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mears · 18/12/2004 16:06

bump

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AimsmumTheRedNoseReindeer · 18/12/2004 17:44

My DD eardrum has perforated 17 times in last 2 and a bit years. I have a lot of aympathy because I know it can be really hard as nothing really helps to make it better. My DD has just turned 4 and got a grommet put in a fortnight ago(its only ever her left ear, no problems at all with her right) I'm hoping this will be an end to her problems as she has suffered quite badly and has missed a lot of nursery ect. However, we were back to hospital last night as the grommet had become blocked and she was in pain again!! Although, I also have to say that her hearing has never been effected in the least and i think this is quite common.
Also I have found antibiotics will clear it up as I also have left it varying times in the past before going to the doctors, antibiotic ear drops often work better than oral ones.
Dont know if I'v been of any help, but at least you know you are not alone.
Good luck, take care

mears · 18/12/2004 18:05

I think she will find it useful to know that others have had this experience without damage to hearing. I think a major problem also is that her DD cries a lot of the time which is very distressing to them both. It is very hard to enjoy a baby who is constantly screaming.

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TheHollyAndTheTwiglett · 18/12/2004 18:11

Can she possibly afford to get a private appointment with a consultant .. which would bring the initial consultation forward and hopefully help her get a diagnosis and course of treatment earlier

I don't have any personal experience but I am horrified at the waiting lists they put our babies through ... poor wee mite

mears · 18/12/2004 18:12

I was thinking of suggesting that also, thanks.

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AimsmumTheRedNoseReindeer · 18/12/2004 18:22

Sorry I also meant to say that by constantly hasseling the doctor and going everytime there was a problem I managed to get my appointment brought forward, and eventually got a cancelation appointment for the op much quicker by asking to see the main consultant at the childrens hospital. Also it may help if she mentions the effect it is having on her. Hope this helps, as I couldn't have afford to go private.

PINNY · 18/12/2004 21:18

I just want to thank everyone for their messages of advice and support - especially mears for starting this! I really am at the end of my tether and my poor bambino appears to be constantly in pain! She has always been really mucousy so i thought she may have a lactose intolerance (after ruling out permanent colds!)I then changed her to soya milk, with little effect as eardrum continues to perforate (5 times since 6 months old, is 11 months now). I am willing to try ANYTHING including craniostapathy and would be grateful for further advice as my knowledge on this is very limited! Thanks again, for once i don't feel so alone with this!

Jimjambells · 18/12/2004 21:30

Best to ask around and get a cranial osteopath on recommendation (same for a homeopath). They don't help every case- but can do amazing things. First time I took ds2 the osteopath said "does he cough up a lot of mucus" I said "no never" she said "oh strange as he's full of mucus". Then at 1am that night he sat up and coughed up this thick green gunk which must have been there since birth! I couldn't believe it. It hasn't particularly helped my autistic son (although homeopathy has) but for draining things (chests, ears etc) I'd really recomment osteopathy.

A friend of mine took her son to see one as he had very bad glue ear. It didn't clear it completely (he still needed grommets) but it did improve matters a bit for him.

mears · 18/12/2004 22:12

.

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mears · 18/12/2004 22:54

Glad to see you made it PINNY .

I am going to start a new thread on how to cope with a constantly crying baby and see if there are any gems of advice there. Will post a link from this thread too.

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mears · 18/12/2004 23:06

here

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Bigfatmomma · 18/12/2004 23:17

Just to say that I've seen an ENT consultant with my 2.5yr old with a perforated ear drum and recurring infections. We're automatically referred as part of DS's treatment for cleft lip + palate.

I asked the consultant about simply leaving the infection to work itself out, but he said that he doesn't recommend this in case of further damage to the ear drum.

Had never heard of recurring perforation before: consultant and audiologist both talk in terms of DS's eardrum "still" being perforated after grommets fell out.

Wishing you a speedy resolution to the problem and an end to your little one's pain.

kinderbobsleigh · 19/12/2004 00:54

There is a Book called "no more Amoxicillin" by a woman called Block. She describes a technique for draining the face and head. Maybe your library has this or can order it in.

PINNY · 19/12/2004 09:59

Well another unsettled night was had by all! DH, DD#1 and i all giving it "twinkle twinkle little star..."! Poor DD#2's ear still draining away - now onto day 6. Is this normal?, when she gets an antibiotic it usually only drains for a day or so but this time (without an antibiotic) it seems to be going on and on. Ok, this may be a bit psychological on my part!

I would love to be able to go private with this one but really expensive and unfortunately just can't afford to. I'm going to chase up her ENT appointment AGAIN on monday and plead!- maybe a few tears will help!

My main concern has been the longterm damage this may cause and would just love to see my baby go a day without some form of pain!

mears · 19/12/2004 10:47

Pinny - have you looked into getting a consultant visit privately but referred back to NHS for any treatment needed? That might be an option if crying doesn't work.

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TinselTamum · 19/12/2004 10:55

Hello PINNY. I'm so sorry you've had another dreadful night. I'm actually wondering if it's possible that there's a particular bug going around- I mentioned in my post yesterday that my dd currently has an ear infection for the first time in 18 months, and her ear is still streaming. Like your dd, she usually only had any kind of discharge for a day or so, but this is well into day 3 and still going strong. She has been fine in herself ever since the antibiotics though (maybe coincidence, I know ). I'm not all that far from you in Mumsnet terms (Edinburgh), which is why I just wondered if there might be something in common.

Now, I hate to disagree with Twiglett (cos she's lovely) but I'm not sure it would help much to go private. It seems to me that the treatment is grommets or nothing, and as they fall out after 6-12 months putting them in for such a young baby would potentially mean a lot of repeated operations. I still think you should push like mad for a referral though, and I would not be happy not to be giving antibiotics personally from your description (but I know that's not necessarily rational).

If you decide to try cranial osteopathy I know a fantastic one in Edinburgh if that would be any help. She's very sound, and very realistic about what can be achieved. You can CAT me if you like- mears will be able to explain

Meanwhile, you just have to believe that it will pass, it will get better, and there are lots of us to have been through it and whose children's hearing has been unaffected. Big hugs.

mears · 19/12/2004 11:08

Found this for you PINNY cranialosteopaths

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mears · 19/12/2004 11:16

I have just had a quick look and there is a cranial osteopath in Galston and Glasgow as well as Edinburgh. I won't see you for a few days so, CAT means contact another which you will see at the top of the page. Click on it and Mumsnet will send an e-mail for you to TinselTamum then she will reply to you. I'll start another thread about cranial osteopathy as well.

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mears · 19/12/2004 11:24

newthread

I am off out today PINNY so I hope you will get some good advice here. I will let you get on with mumsnet yourself now because I am sure you will quickly pick it up. Definately use this site to have a good moan as well. I promise I won't follow you around. Hope you get some help and reassurance. See you soon, mears

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