glue ear and difficulties at school/nursery

[incywincyspideragain]

all 3 of my ds's had grommets last year (ages 2,3 and 4 at the time)

ds2 is going to have grommets again (now aged 4) in 2 weeks time less than a year after his first set, he has become withdrawn and clingy again at nursery and home The consultant said he had 'significant' hearing loss in one ear and not enough in other ear to compensate, he often lip reads and misses most of what is said. Today he has been flopping around saying how tired he is and watching TV is 'too much'

ds3 is only 3 months after op so is doing ok, he has speech and lang delay and we're about to see SALT, he winges and tantrums, mostly out of frustration - I still don't understand most of what he says

ds1 is struggling at School - terrible first yr, had grommets towards end and really improved this year (can now read), then out of blue since Feb has been having problems (not listening, refusing to do set work... we haven't worked out if its all hearing related or if there is other stuff going on, School have called in Ed Psyc again). He describes his hearing as 'flat' although appears to hear us ok (we have a hearing test booked for a weeks time) He also says the reason he can't do his work at School is it is 'too noisy and makes him grumpy'

Tonight I'm totally fed up with it, I have no idea how to spot if they can't hear very well (I already feel guilty that it took us until pretty much the end of reception to get ds1's grommets and how he understood phonics pretty much instantly after that) or how much it is affecting their behaviour or even if I'm placing too much weight on it and actually its not that bigger a deal (although I understand that ds2's audiogram showed it wasn't great - left ear under 20db for low Hz falling to 40db, right hear 40db)

I know lots of children have glue ear (I think about 4 children in ds1's class have had grommets), presumably it doesn't affect their behaviour so much that the Ed Psyc comes in? so there must be something else going on?? or that nursery suggest ds2 might need 'additional support'? (I have no idea what they mean by additional support at moment)

By looking into it I know their hearing fluctuates with glue so how do I flag up that it might be a problem if somedays they are fine... or am I trying to pin their difficulties on hearing when actually there is another dx/additional need that I haven't considered?

Has anyone had any experience of reoccuring glue ear?? How did if affect your dc? I need to work out what I'm doing with this as I have a few years ahead before they 'grow out of it' but I have no idea what

hi incywincy

I'm sorry you are having such a nightmare with this. My DS (now 2.5) had intermittent glue ear which caused hearing loss obviously but the real problem for us with absolutely endemic ear infections (like 15 in one year - he was on antibiotics literally every day for 12 months).

It did delay his speech but the hospital were reluctant to do grommets becauses this all happened when he was only 6mo - 18mo so below their standard 2yo lower limit for grommets. Cue massive row and he finally got grommets at about 22 mo since when his speech has picked up hugely and he hasn't had an ear infection since.

But that's just background. To answer your question, when I was battling the hospital to prove there was a problem, I bought a gadget from amazon which sends some sort of soundwave into the ear and tells you whether there is glue there or not. It's this one
www.earcheck.com/

I had to import it but it wasn't hugely expensive. It's not foolproof by any means - but it did help me quite a bit when my son was too young to tell me that he was in pain. It gives you a red, amber, green reading. Red is definitely fluid present, amber is monitor and green is fine. I quite often got amber when he actually had a raging infection and a head full of fluid but it was helpful in giving me a clue that there was some fluid there and helping me anticipate an infection on the way (like if it ever said amber, even if he wasn't in pain at the time, he would be two days later, without fail).

thanks margo we went through the NHS for ds1 and I'm now very grateful to dh's company for private healthcare so we do get seen very quickly - ds3 had grommets off the back of the other 2's difficulty/family history after NHS told us to wait till he was 3

sorry to hear about your ds's ear infections - we haven't had that problem, they have only had a handful of infections between them (which is amazing since they have all been in childcare from 1) its a 'warning' sign we never get about their ears being blocked...

Thanks for the gadget link - I'm off to have a look - I already have an otoscope

the intermittent nature of this is really frustrating. NHS told me they wouldn't do grommets because out of three hearing tests over four months, he had almost normal hearing in one of them and that meant there wasn't a problem. The fact that two thirds of the time he was almost at zero on the chart was neither here nor there!

On reading your post again, I remember talking to one of the school mums in my DD's class. Her DS had grommets at 3 and started nursery class with significant speech delay and other behavioural delays. He's absolutely fine now - in Reception. They were beginning to investigate the ed psych things you mention but in the end it really was all the impact his hearing loss and speech delay was having on his general development but it has all got better. So until you have firm evidence of something else, I would think you are right to assume it's all the hearing issues.

My DC had grommets/adenoids out at 2, grommets at 4 and 5. We didn't have ear infections either. After 3 sets we decided not to have any more grommets. At that time there was also an option to have 't' tubes which were permanent grommets - not sure whether they are still available as my DC is now a teenager.

The problem with grommets is (as I am sure you know) that you never know how long they will stay in. Once they are in the ear drum grows and tries to expel them and they pop out. The problem is that when you have grommets the eardrum is scarred and doesn't work so well when the sound hits it. The added complication that we were told by our ENT consultant was that if you don't put grommets in the glue builds up and if it stays there too long it can scar the ear drum on the inside. So to me it seems we can't win either way!

Sometimes if hearing problems are intermittent they give the child hearing aids for the bad times. This seems to vary with the health authority.
We have had a great deal of help from the National Deaf Children's Society www.ndcs.org.uk/applications/discussion It is possible to speak one of their audiologists via their free helpline. We found this very useful as it meant that we asked the right/most useful questions when we had an ENT/audiology appointment.

I am sure your DS1 feels grumpy and tired as it is hard work having to listen really hard just to know what is going on. Can you take a letter from school with you to the next ENT appointment so they can see the affect the glue ear is having on his behaviour. I think as glue ear is one of those conditions that can clear up by itself the hospitals use a 'wait and see' policy, but whilst they wait our DCs are having major trouble at school. So you will need to push IME for a useful outcome.

Good luck. I hope the NDCS link is useful.

goinggeststough - thank you for the links, I think I do need to get some advice, School haven't acknowledged that hearing could play a part in ds1's difficulties so I think I will just have to get as much info as I can from consultant - the starting point is the audiogram

The difficulty is that ds1 doesn't really explain that his hearing maybe bad so I'm not sure hearing aids would help him with bad times, I could do with advice on getting him to actually say when he doesn't understand, he couldn't spell 'with' today - I said it twice then moved so I was facing him said it again and he wrote it down - the first two times he just said 'I don't know' then 'you tell me' then once he SAW me say it did it, again I'm frustrated, why didn't he just ask me to do that?? I know he's not even 6 but I need to help him work it out because the first two comments are exactly why the school label him as 'definant'.... School implement strategies like reward charts but it doesn't work, they want Ed psyc to see him and tell them what might work, I think they need to make sure he knows what is happening, maybe the psyc will help me find some way of getting him to ask for help.... (hence I've not refused the appointment)

did your ds grow out of it? what was the implication of not having grommets to his schooling?

My DD is almost 11 and had grommets in twice and was supposed to have them in last year, however she had an ear infection on the day of surgery, so they only took her tonsils out. This is re-occuring for years and we have put ALL her problems down to that - and I mean ALL!!

It's only now, that as we're reflecting over years thats it's 'hit' us - there is other issues with DD. Unfortunately for us, school are not helpful but if they are wanting the ed psych to visit then that is a good thing and accept it with open arms :)

Good luck and you don't have any reason to feel bad.

PS I forgot to add that even with Grommets in DD did have these 'other' issues but could obviously hear much better.

Incy the other thing you need to remember that is each time they have a period of not being able to hear due to glue ear the brain has to relearn how to hear again - part of auditory processing, so it's the lenght of time they can struggle can be longer than you think.

I would personally suggest going to see a cranial osteopath as well as pushing for more grommits for him

Could it also be possible that he has another hearing difficulty above and beyond glue ear?

I had one dd with glue ear who had a personality transplant once she got grommets at nearly 5 and a different dd who had passed all the NHS test but had severe speech delay and turned out to have an auditory processing issue that was successfully treated using Johansen therapy privately - best money I ever spent!

You can ask the school to give him an IEP - individual education plan and in that they have to detail what they are going to do to ensure he reaches the targets so that could include them making adjustments to accommodate suspected hearing issues. Does he sit at the front near the teacher etc?

The noise of the classroom probably does mentally exhaust him as his brain is constantly trying to catch up from when he can't hear to when he can.

ds is SA+, his IEP =

1. put my hand up and wait for my turn to talk (can do this in small groups of 5 ish but 'forgets' when larger group)
2. To complete a piece of written work in a given time - I haven't bottomed out how they know that he has understood what he is supposed to be doing
3. To follow instructions straight away this one I hate now.... although it does say he needs to listen to the adult and repeat instructions back to ensure he understood, although I'm not sure this is happening

Thats it, I have no idea about his seating position etc, I'm not asking the right questions am I?

I have asked about APD on here before but I'm floundering about where to go for support with it - School (rightly) say they can't make a dx but they don't give me any insight into what they think it might be, maybe they just don't know

I should also note I don't see they difficultly they do - I know they are talking about the same child but they have every negative thing x20 in the class room

don't worry I have always accepted support school have offered last year this was 3x Ed psyc observations (one at home) 1x Intergrated disability and 1x hearing team (parental referal with no action because by the time he saw them he had grommets...) his last observation was May 11 and this is the first one we've had booked for this academic year because 'he was really improving'

I suppose I'm biased but I'd say that the Johansen therapy wouldn't do any harm and it may well help!

My dd who had it - her hearing was all over the place, low frequencies too sensitive, high frequencies virtually hearing impaired in one ear but because they were below the magic 40 decibels past the NHS test , the improvement in her speech was amazing and so quick - she had treatment at 3.5 as a bit of a fluke - until she was 4 we really couldn't understand her as her parents and pre-school had relied on the the other dc translating

I wonder if to some extent your ds has just given up with school being constantly not sure of what is going on/what you are meant to being doing and being told off must be so demoralising

and thats when it doesn't make sense - his NC levels are Writing 1A, numeracy 1A and Reading 2C.... he can do it but I think you are right he has given up to a certain extent - the last reward chart was a diaster - for doing what he is asked straight away he gets a sticker, 4 stickers = mini certificate, 20 in a week = big certificate. Week one he get 19, ffs, week two 0 - I think I tried to say he doesn't see the point, they let him fail on the first week, they said they would keep going on the grounds consistancy was really important. I do come out of meetings thinking we have a plan and then it doesn't seem to work.

off to google Johasen therapy

its very interesting - can I just ask how much it is?

We've put off cranial osteopathy due to cost for all 3 - I don't think I can pick my favourite to start with

Hi all, my dd is 11 years and has suffered with reccurent ear infection/glue ear since she was born. Is constantly on antibiotics.

weve had in total 8 grommets and a procedure called a myrinoplasty (the ear drum is skin grafted) twice. We were back at ENT last week and the graft has broken down and perforated and now awaiting another operation for a third graft, the surgeon states it will be his final attempt as hes only ever done it twice before???

Hearing is poor,learning has been affected.

I really sympathise with you and hope it isnt going to be an ongoing problem for your poor children. Keeping ears bone dry seems to be the only advice I can offer!!

If youre unhappy with the ENT consultant its important that you get a second opinion!!

Hi - I'm happy with our ENT - we see the same man with NHS or private so he knows the family, I'm confident that ds's will grow out of it because dh did and one thing I have to be positive about is that we don't have ear infections - I will have to question the grommets if we keep being recommended sets less than a year apart, thats feels like too much

The interim is how to support them at school and nursery - School aren't on board and nursery are in a building that has terrible aucostics (they admit that but are obvioulsy limited by what they can do with that)

Johansen was expensive £120 per visit (assessment and then customised cd to listen to) and we went about 5 times - but it gave her pretty much perfect hearing.

I would fork out on cranial osteopathy for him (just do one at a time in age order) to see if they can speed up the process of the tubes being at the proper draining angle.

I would ask to see his teacher again and ask for his instructions to be given in writing?

thanks Randommess - I'm not sure we could stretch to Johansen at this time I am really considering cranial osteopathy, I want to see how hearing test is in a week and make a decision on who to take first! I've found, a recommended, one locally - I wondered if she'd do me a deal for all 3

You can but beg ask!

goinggetstough - thank you so much for NDCS link, I've been looking over it tonight, so many people with similar concerns and great advice on preparing for appoinment on Monday and talking to school again x

has anyones lo's had hearing aids?

I'm preparing myself for Monday - best case is hearing is fine, if not then I guess we have 2 outcomes - mild loss = wait and see or grommets, which means (a) since 'mild' loss means 'struggles to hear voices over 6 feet away or with lots of back ground noise' then I think he'll need extra support in a School setting or (b) grommets would be 6 week wait (minimum) on NHS (we are trying to get him referred privately but I anticipate the same kind of wait) so I could leave on Monday with him no better off for half a term (or more), if this was eye sight I could get glasses, even if he would 'grow out of it' no one would dream of saying ' you can't see properly and its affecting, say, your reading but it will get better so lets wait 4 months and see' or (and I know I'm being dramatic now ) but just because you break your leg no one says it will be better in 12 months so lets not bother with crutches - can I ask for hearing aids? are they really expensive? sainity check.... am I being over dramatic to say that without 'normal' range hearing they are expecting too much for him to access any strategies the Ed Psyc may suggest??

Good luck for Monday! Just out of interest did they ever test your DS's hearing straight after grommets because it always surprised me they never tested my DSs. I know they do the tests (bone conduction?) which omits the ear drum but it always seemed sensible to find out what the base line was after the grommets.
Do ask for hearing aids? You have nothing to lose. Explain very directly how your DS's learning changed when he could hear. Different health authorities have different views/policies.... If they think HAs would be suitable do remember that there are a choice of colours for the actual aid and the ear mould. The ear moulds come in plain/colours and with a variety of stickers if you so with!!. All these things can help new hearing aid users settle in at school with them so that the other children are jealous!! IMO I think it can be useful for hearing aids to be slightly visible. My DS has had electric blue ones!! It just means that someone might see the HAs and then remember to look at our DSs when speaking to them etc...
We tried cranial osteopathy and it didn't seem to make a difference sadly to my DS. However I have known other children have a positive outcome.
I hope it all goes well on Monday. Take your list of questions with you and be assertive. When my DS was the same age as yours our GP said to me that "if you don't stick up for your son no one else will." I know that sounds like fighting talk (and you don't want to put the audiologist/ENT consultants back up) but it has been true.
Do you let us know how you get on..

thanks goinggetstough - thats good advice from your GP btw.
ds did have his hearing tested about 4 months after grommets and it was within normal range (0-20db) both ears. At Christmas he had his hearing tested, right ear grommet was out and his high frequency hearing in that ear was down at 40db but lower hz fine and left ear (with grommet) was 0-20db. I'm hoping right ear was a winter cold blip and it might be ok... but higher hz goes first with glue ear...

I'm going to sit down with dh tomorrow and get my list together - any ideas how I can lay in on thick really explain how School is without ds hearing the whole conversation? I wondered if I could get him some headphones, he has quite a low self estem at the moment (I think its the focussing on the negatives all the time - he believes he knows more about what he can't do than what he can do ) We stopped letting him come to IEP reviews this year, even though School wanted him there as it was doing more harm than good.

I will ask for HA's though if his hearing isn't within range, I now have my arguement for that I think.

Don't worry I'll be back for a rant on Monday I'm sure

thanks for your PM goinggetstough, I had my list and it wasn't needed ds had a hearing test and the majority of the points where in the 0-20db range, a couple skirting the edge but within range non the less! the high Hz in the right ear is still at 40db - that might just be his hearing in that ear now but happy because the consultant said it was 'normal', he reassured me that it shouldn't be impacting his learning in the classroom.

Amazingly he went into School after and was star of the day only the second time ever thats happened! I think he's had some flucuating hearing loss with a couple of the standard winter colds but it was good to know that it shouldn't be imparing him now. I do still have some concerns about his processing and he still says the classroom is too noisy but feel much more confident to follow that up knowing his ears are ok.

DS1 has glue ear as well as a permanent loss. Not sure I can add much to what has been said but early on you said about watching TV being hard, do you have the subtitles on? DS now has levels which mean he can't access tv without but when he was much younger we found it made a huge difference to his concentration, he virtually learnt to read from them . I know you don't want kids glued to tv but it is useful to put on when they are tired etc before sub titles DS had no interest but once he began to understand more he became interested.

not thought of that geogtech - its ds2 who finds tv difficult and he's only 4.4 yrs so not at School yet or reading but it might help in the future so will keep it in mind

asked TA how ds1 was doing, she said really well, 'like a different child this term' I said I really thought he had flucutating hearing last term which was causing him difficultly, her response 'he has hearing difficulties??' !!! ffs, I don't blame her, she is the class TA, the class teacher should have told her, althought that says volumes about how much difference they believe hearing makes... I don't claim to know if he has additional needs buy surely if you know (and its data based evidence - I have given them all his audiograms) that a child has difficultly hearing you make sure they can access the strategies in place expecially verbal instructions?!?