Glue Ear has messed up my son completely

[JennyLeevesmilkandcookiesforSa]

my 7 year old's grommet have fallen out after 9 months and the glue ear has come back, he is very very deaf and is dazed and confused, he could not even enjoy kickboxing which I stupidly thought he might be able to go to as the man who runs it shouts all the time, but he was lost, disruptive and confused and due to a cold he has had, looked like he was going to pass out and die from all the running, only good thing is I was withdrawing him from school anyway, just as well as then he truly would be screwed. Obviously people have kids with worse problems, but this is just like a disability and I wonder if anyone else has had glue ear symptoms that affected behaviour so much and the well being of your child?
Will be getting an otovent tomorrow or the next day - do they work well?
And of course the gp thinks he will need the grommets again, any thoughts? do you think i should just tell people he is deaf so they will make allowances even after i explained to kickboxing guy he was nice but obviously thought i should not have taken my son, I understand why though but it sucks

I mentioned it to someone at work who's child wears a hearing aid because of glue ear, he's about 18 months. She booked some up straight away to see if it helps.

It is all to do with unblocking the lymphatic system (I think, don't quote me!) but what ever it is, it is working for my 5 year old DS.

thanks for the tip, I am near Ediburgh in Scotland but there will be some up here, will look into it.

He had his adenoids out at the same time as the grommets, so only really tonsils left.
his ear has just in the last hour began to go red on the lobe and hot........Bllcks, its the one with the grommets sitting in the canal the deaf ear

Chances are they will carry on putting in one set of grommets after the other, jenny, if his ears continually block. That's what happened with dd2.

i realise that seems to be the most efffective thing they have, the grommets

Grommets work for a lot of kids. My son was just one of the 5% who didnt get on with them. He had his adenoids removed, but still has his tonsils.

Children do out grow glue ear, its just a matter of relieiving the problem until their ear canals are bigger.

Have you tried osteopathy? It works for loads of children and can prevent the need for grommets. Worth a try if things are getting really bad and the grommets aren't working.

Sorry, Kbear. Hadn't read all of thread.

But I endorse that wholeheartedly. CO is brilliant.

Another voter for Cranial Osteo. Cannot praise it highly enough. Cured Glue Ear in my DS.

is it around 25 to 35 pounds a session is that about right?

Otovent hurts ds but we will persevere, also E.N.T. consultant secretary said that my Gp has to refer ds, so back to gp on friday, and then she said there is over a month waiting list, guess ds will just have to be deaf then

on a better note have consent to home ed so ds is no longer 'skiving'

JennyLee,
My son is being fitted for hearing aids tomorrow. He didnt get on with Otovent because he found blowing up a balloon with his nose too hard. There are other options than grommets. Grommets can have their problems which is why they are relucant to perform surgery for temporary deafness.

thanks frances the grommets were only a short term fix and I think they are just not worth it long term. i think I will ask about hearing aid at gp and at out patient appointment to check grommets, the grommets are at the moment no use at all. IO had no idea deafness was so exhausting for the children, have had a terribel day with him he is so frustrated and took hours to go sleep and he can only hear me if I am right next him and he is looking at me or of course if he is not so close lookng at me and i shout, feel so down. I hope the earing aid helps your child and everything gets better

JennyLee have you been given any information about coping with glue ear and making life easier for your son.

ie.

www.ndcs.org.uk/information/childhood_deafness/glue_ear/index.html

Your son is lucky in that being home educated he wont have to cope with noise of being in a classroom. However it might help your son to be in a room with plenty of soft furnishings like carpet and curtains when you are doing educational activites. It is harder for a partially deaf child to cope in room with an echo.

thank you frances 5 hope the hearing aid fitting goes well. I did look up that website and it helps .

My DS has suffered from glue ear since he was a baby (picked up at 7 month check) but we have been very lucky that it has been well treated. He had grommets at 2.3, and then grommets and adenoidectomy at 3.6 and then more grommets at 4.5.

These last grommets are t-shaped ones which do not fall out. He is nearly 6 and they are still there. The downside is that he will probably need another op at some point to remove them but since he was having ops anually anyway not much difference. He got the t-shaped grommets in the summer before he started reception and has had no trouble at school.

The grommets, every time, made a noticeable difference. The first couple of days after each fitting would be full of "what's that noise mummy" - things like a bus on the main road which you can hear from our garden, birds singing, the fridge etc.

oh jennylee, I'm so sorry your boy is suffering so.

I have a bit of a bee in my bonnet about glue ear so forgive my rant.

We took dd to the doctor (think she was then 4 or 5) and she clearly (to us) had a major hearing problem. However, in the silent doctor's office, she could hear the doctor speak perfectly. We were sent away. I went back THREE more times before, reluctantly, they wrote a referral letter apologising for referring dd for such a 'trivial matter' (their words). I phoned the consultant's office and were told we would have to wait around 6 months (we weren't a priority and they were annoyed we'd been referred).

I booked an appointment with the same consultant privately. We turned up, he did a hearing test and it was clear straight away that dd had moderate to severe hearing loss in one ear (and severe on the important decibels) and mild in the other. In short, the consultant wrote a letter back to the GP and he was OUTRAGED that they had ignored us for so long (sadly he said it was something he saw quite often).

If you can afford it, I would try and see the consultant you get reffered to privately. We only had to pay for one appointment because for the follow up appointment, our NHS referral had come through and we used that up iyswim. I would tell people he has a hearing problem in the meantime. It is the worst time of year for it of course but don't let the GP fob you off. If you are in London or Surrey, I can recommend the ENT consultant (he has a special interest in hearing). He was fabulous and lovely with dd.

apologies if this question has been asked/answered a thousand times! My son, nearly 5 has grommets (his second set.) He is desperate to learn to swim, any advice? Can kids with grommets learn. All I receive is conflicting advice and that includes his consultant.

Yes you can swim with grommets provided your child does not have an ear infection. You need to make sure what does not get in the ear. We found that putty ear plugs combined with a swimming cap the most effective way of keeping water out of the ears.

www.swimstop.co.uk/view.php?cat=177

If your child has some sense and really hates swimming hats then you can buy and ear bandit to use instead of a swimming hat. However we found that my son took the ear bandit off in the water where as he cant remove the swimming hat on his own.

The ndcs has a parents page bit where they discuss stuff and from that it seems that you can get kind of plugs that are made from moulds or cast of their ear shape that keep water out completely.So they can swim

foxinsocks I can quite understand why your DD could hear so well in the office. I had some glue ear as a child and it basically makes everything muffled much like if you have your head in water. So with no background noise it is much easier to discern the noises. I was referred for a hearing aid at one point but it didn't help much because it was still muffled but louder. I suppose hearing aids might be more high tech these days.

Hi Joliella, my DD had grommets and did actively learn to swim whilst she had them (can't swim now lol), she wore ear buddies and an earbandit to keep them dry, we never had any problems with infections or such like.

Jenny,We had a real battle at home with behavioural/sleep issues prior to being diagnosed and grommets fitted, she did really badly at nursery (who later admitted that they didn't realise how deaf she was despite being told by myself- she got by mostly through lip reading) as a result although she is now in year one she is desperatly behind her peers and receiving extra support. We also are still going for hearing test and find out in FEb whether she needs more grommets/hearing aids.

Slso, to explain how loud she is I always tell people that she is hearing impaired.

Foxin socks thanks for that, it is Edinburgh sick kids hospital that I am trying to get him seen at, so not London unfortunately.

But thanks we may do that will find out more aobut getting him seen privately

My son was fitted for his hearing aids today. He was fanastic and cooperated with green gunk being put in his ear to make the ear moulds. He has decided to have blue hearing aids and the hearing aids will have a picture of Jake from the Tweenies on.

We will get Andrew's hearing aids in a few weeks time. Needless to say Andrew is extremely excited at getting bionic ears.

Other than the trauma of finding a parking space in St Albans, the morning was very easy. Certainly it was more pleasent for Andrew than him having an operation.

thats brilliant frances, I am so glad that it went well and that does sound a lot better than an operation, hope he enjoys his new hearing , it is nice that they can pick the colours and things like that

thanks all for your advice, much appreciated. Jennylee could you let me know what the ndcs website is please? Am I being dense!!

www.ndcs.org.uk/information/childhooddeafness/glueear/index.html