I know it will have been asked before but please would someone come and talk to me about glue ear?

[used2bthin]

My DD has a speech and language delay, she is 2.8 and has been lucky enough to have had speech therapy since she was 2. She had a hearing test a year ago which was fine then another today, I self referred as she has had another three ear infections in that time one of which didn't clear so we had to go to hospital for stronger ABs. The SALT also felt it a good idea. Anyway DD didn't do well with the toys test as she just wanted to play with the toy aeroplane. I know she knew each of the objects but it woud have been impossible to tell whether she couldn't hear or was just ignoring instructions. They then used to test they use for babies bu again DD didn't really comply they know she could hear 40 decibels but couldn't be sure of anything under. Then the glue ear test showed conjestion. I've got to go back in two months but the audiologist said she doubts that glue ear alone has caused the speech delay. DD has a genetic condition and has had a lot of hospital type stuff, she has had two general anaesthetics, countless hospital stays so I am willing to believe they have had effect but surely glue ear alone could also damage speech development?

[PussinJimmyChoos]

www.patient.co.uk/showdoc/23068746/

Its a known that glue ear can contribute to speech delay, even as a stand alone condition

[used2bthin]

Hello was going to text you, wrote most of that whilst on the phone! Thanks x

[PussinJimmyChoos]

[[http://www.netmums.com/coffeehouse/children-parenting-190/speech-language-clinic-261/46264-speech- child-glue-ear.html]

I've committed a cardinal sin by venturing to netmums I know

[PussinJimmyChoos]

www.netmums.com/coffeehouse/children-parenting-190/speech-language-clinic-261/46264-speech-child-glu e-ear.html

second try!

[used2bthin]

Thank you! Will ask you here rather than text as its easier and someone else may want to read, they said about hearing aids if it hasn't cleared after the next appointment, how do they attach would that just be over her ear? She'd pull them off!

[clumsymum]

it depends how long she has been unable to hear, doesn't it? I would stamp your feet to get as many checks as possible.

Make sure that they are CERTAIN it's glue ear. When I discovered ds couldn't hear on his left side when he was 3, they told me it was 'probably glue ear'. I insisted they investigated to get a definate diagnosis, which took 5 months on the NHS. By the time they actually identified it was a cholesteatoma (a kind of infective tumor) in his left ear, it had destroyed the 3 small bones in his ear, leaving him permanently deaf on that side .

Undoubtedly hearing tests on small children are very difficult, and hence unless you insist they keep trying, and find an audiologist who is particularly enthusiastic, you can get stuck in a rut of no-one properly getting to the bottom of the problem.

[used2bthin]

Thanks clumsymum I hope your DS is ok now? What did they do? They did a glue ear test with the thing they put in her ear (technical term!) and it came out flat for both ears. They did it several times to check and the only time movement was sensed was wen DD talked in the middle of it. So it seemed a definate diagnosis but I don't know if there are other more accurate tests? A peadiatrician will be there at the next appointment-two months away. They said that for up to two months after each ear infection she could have muffled hearing so I can't see how it could not affect her speech or what they are getting at saying there will be other factors I also think that they thought her understanding was less than I know it to be because she wasn't able to complete the stupid task!

[PussinJimmyChoos]

I have a private audiologist and for what you pay, in relation to the service you get - it is so so worth it. I would personally recommend getting a test done privately as I think time is of the essence with these kind of things and ime, the ENT can take so long to do this kind of stuff - they misdiagnosed me for 11 years before Mum pushed for appt at GOSH!

As for hearing aids, I think they have special bands that go around the head to keep them on while playing etc and you can get them in all different colours to keep kids enchanted with them but I do think the taking them out is a problem that a lot of people have with toddlers - I had to be bribed to keep mine in!

I wouldn't worry too much about hearing aids just yet - I would focus on a private appointment and pushing forward with a diagnosis. What does SALT say re glue ear - if anything?

[snickersnack]

Well, ds has been diagnosed with glue ear and his consultant is convinced that's causing his speech delay. He has never suggested there could be another cause - the plan is to treat the glue ear with grommets, see if the speech improves, then review.

It figures - he actually has quite a decent vocabulary, but using a very limited range of sounds, because his ability to hear high frequency sounds is seriously impaired.

I'm sorry about your ds, clumsymum. That's awful.

[used2bthin]

Thanks puss I have left a message with the SALT but think she is away so may not hear back immediately. I would pay for an appointment but not sure if they would do any more? It was a diagnosis we were given a piee of paper to give playgroup and everything Her last ear infection was march so this conjestion could still be from that. Thing is we barely go swimming anymore, she used to get ear problems after that. If she didn't have conjestion at the next one though I got the impression they wouldn't worry which is silly because she didn't last time and as glue ear comes and goes, it means nothing!
snickersnack when you say consultant do you mean ENT consultant? All we have seen so far is community audiology. How many times did they test your Ds before talking about grommets? They said today IF she still has it next time then we'd discuss options and maybe hearing aids. I hate the drip feeding of information some HC professionals do, its the same with her genetic condition, as if they think you won't take it all in so just give you what they think you need to know at that moment.

[used2bthin]

snickersnack sorry I went off into rant mode there! DD also seems to know more words than she can say and the SALT said she doesn't have concerns about her deelopment other than speech and possibly language. Maybe it was just that DD did so badly with the tests.

[clumsymum]

Hi Used2, DS is OK, he had to have 3 bouts of surgery to scrape out the infected flesh, (from behind his ear, they basically cut in from behind and scrape the middle/inner ear clean) and we have to have regular check-ups to ensure it hasn't returned.

He copes with hearing only on one side. They have said that they can offer reconstruction surgery when he gets to 16, to restore some of the hearing, but the 3 ops he had for it have put him off for life (he's 9 now, maybe he'll change his mind later).

Thanks to you too snickersnack. I feel very angry about it too. Thing is, if I hadn't insisted on further investigations, it would have gone on growing, and cholesteatoma can infect the brain, causing meningitis and fatality. I NEVER trust a 'probable' diagnosis of anything, thank God I didn't this time.

I hope you manage to get your DD's situation sorted Used2...

[used2bthin]

Thanks clmsymum and what a nightmare you had, thank goodness you pushed for what your DS needed.

[snickersnack]

Hi - we went a different route to you, I think. I raised a concern about ds's hearing with the GP when he was about 15 months old because he'd had repeated ear infections and didn't seem to be responding to sounds. She suggested leaving it until 18 months and then re-assessing. At 18 months, she agreed it was a concern and referred us to an ENT consultant who looked in his ears and diagnosed glue ear. He had some hearing tests which confirmed a problem. By 20 months he was seeing a SALT intermittently to give us some suggestions for how to encourage him to speak - she made the point about him only making certain sounds. We saw the consultant again at 21 months and he said the glue ear was still there (it comes and goes in some children) and agreed with the SALT about his speech, and this was the point at which he suggested grommets.

I'd also say that ds has enlarged adenoids, which will be removed at the same time, and the ENT chap says his tonsils are also very swollen but he thinks he's a bit young for them to come out. I think, essentially, he's just a very snotty, mucousy child who is prone to ear infections as a result. So we're hoping that these will go once the grommets are in and the adenoids are out, and that the speech will improve. The operation is scheduled for 3 weeks time...

[used2bthin]

snickersnack lots of luck for the surgery. I've got another thread in SN actually about my DDs surgery which may happen this summer so I do understand how worrying it is, it is horrible waiting. Hopefully though this op will make a big improvement for your DS. Yes we haven't seen anyone from ENT yet although the SALT mentioned it after the last ear infection so we will see.

[vjg13]

Clumsymum, my daughter has been diagnosed with a retraction pocket near her ear drum which can develop into a cholesteatoma. The ENT consultant is cleaning it out (under anaesthetic) in a few weeks and seeing how it has changed. She has special needs and this is the ear with better hearing. She will be getting a hearing aid soon for her other one.

Did your son have a long recovery from his surgery and was it easy to manage. The leaflet they gave on mastoid surgery has scared the life out of me!

[clumsymum]

VJG, I was concerned before ds's surgery too, it does sound scary.

As it was he only stayed in hospital overnight each time, and was absolutely fine within 48 hours. I was told to keep him off school for a week each tme, but he got very bored, simply because he felt completely well.

[used2bthin]

I wonder is there anything I could be doing for DDin the mean time? Anything alternative that people have found helped? Her SALT provision is pretty good, she has started pre school but obviously it won't run in summer so anything else that could help? I feel the need to do something!

[messageinabottle]

My DS (2 in a week) has glue ear. Problems started when he was about 6 months, he had constant ear infections. Dr. was v unsympathetic, would not refer at that time but just prescribed antibiotics (several times). After looking into what could cause it and how I could help (as Dr. wouldn't) we decided to cut out all dairy and when he was just over a year took him to see a osteopath.

I am not entirely sure what has helped but he hasn't had an ear infection since we saw the osteopath and he doesn't have a runny nose anymore (related to the restriction in dairy/reduction in mucus?) I don't know but worth a try? Quite expensive (£30 a session) but as I said he hasn't had an ear infection since we started seeing her!

[used2bthin]

Thank you messageinabottle. I have tried cutting down on dairy for DDs skin problems but it may be worth anoter go. Osteopath also a good idea, how many sessions did your DS have to have or is it ongoing? I wonder what the theory behind it is? I mean how it helps etc because my chiropractor claims to be able to help with lots of childhood problems.

[messageinabottle]

yes I didn't put there - but there were also other reasons why we cut out dairy (excema, runny nose and I only found out AFTER I had given him dairy that his dad was also intolerant until the age of 3!) so I'm glad you understand the dairy thing because as I said it all cleared up very shortly after we stopped dairy, but also since DS saw the osteopath he hasn't had another ear infection.

right I will try my best to explain! This will be a real simple explanation as I find it difficult to understand myself!

usually we aim for appointments to coincide with DS' afternoon nap - basically the osteopath manipulates DS' head, shoulders, trunk and back while he is laying down.

The idea is that the body is healthy when the fluids are running around it as they should. with my DS (and with lots of children) he is not able to drain away the mucus (the same mucus that is produced when consuming dairy). This collects behind the ear and/or nose, usually resulting in runny nose and ear infections. The ear infections were a real big problem for us as the ear would usually perforate, with the fluid coming out of hte ear eewww. Anyway, for whatever reason poor DS cannot drain this fluid himself so the osteopath is helping to do this (as well as helping with his general wellbeing). Again a good reason to restrict/cut down on dairy is that the production of mucus is lower. Eventually when children are 7ish their jaws drop and the e..... tube (cannot spell!) moves from horizontal to slightly sloped so hopefully by this time they should be able to drain it away themselves!

I'm sorry this isn't really a very good explanation - I guess the reason why I haven't made an effort to find out what it is/why/how it works is because for me the proof is in the pudding - it truly has worked for us!

We started seeing the osteopath last September and are still seeing her! But now it's every 6 weeks/2 months. We started off every week, then every fortnight then every month leading up to now; as I said v expensive!

We are now under ENT who have no suggestions but grommets and the audiology dept who are good but can only test his hearing so are unable to really help resolve the problem - happily his hearing is (v slowly) getting better. and of course he has had no ear infections.

I can help you with any more questions you might have but I'm going out in a bit

[used2bthin]

Thankyou sorry to have only just come back to tis DD woke up and we had to go out too. DD has had the fluid coming out of her ear twice poor thing it must be so painful. Glad your DSs hearing is getting better and that there have been no more infections. I think if DD has another infection I will push for an ENT referral and see if that helps. I wish I could know for sure that osteopathy would work I would do it if I did, its all a bit like with her psoriasis and excema, I'd pay any amount for a cure its always so hard to know exactly what is helping with this sort of thing but in your case yu seem to have found something that works. When I have got less on I will definately try going dairy free for me and DD. She has never been a child who is particularly prone to a runny nose it just always goes straight to her ears whenever she gets a cold.

[used2bthin]

Meant to say I will look into osteopathy next time I am at the chiropractors as they do it there for children.

[messageinabottle]

oh yes DS had the fluid out of the ear about 5 times - it's terrible but I just about got used to it in the end, it happened so often. Once there was even a little bit of blood yuk yuk and still the Dr. wasn't really interested in what could be causing it and again just prescribed antibiotics.

Yes it's difficult isn't it - I originally took him to the osteopath after advice from here (after trying homeopathy which suggested the no dairy but not much help otherwise tbh). I was desperate for something and would have tried anything at that point! As it turns out it has worked for DS but that's the trouble isn't it all children are different so of course will respond to different treatments differently.

No harm in pushing for an ENT referral though is there. Our ENT haven't been particularly helpful - they are basically saying there is not much they can do apart from grommets. I'm not keen on grommets though for various reasons but mostly because I'm worried that DS will be the small percentage whose ear doesn't heal up after they have been inserted and naturally fallen out - his ear still hasn't healed from the last perforation in September last year. Difficult v v difficult.

Oh yes one last point it's not Cranial osteopathy that DS has been having - this is pooh-poohed by our osteopath as I think they have very limited training but then again osteopaths are sometimes pooh-poohed by the medical professions as being pointless!

[used2bthin]

Ah thank you that was what I was going to look into so will think again. I was thinking today that I might go for it because I feel I need to do something. Spoke to DDs SALT today who said she thinks the audiologist probably looked at DDs notes and thought here is a child who has had lots of issues so were covering their backs by getting the paediatrician to look at her next time. Thing is by next time she may have had her op so will be easy for them to blame that if she still isn't talking. I think I will try something alternative anyway just to make me feel I am doing SOMETHING.