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

JL my dss suffered from glue ear from his toddler years up until he was a teenager.

It affected his education at an early stage because the school were unaware he had hearing difficulties. The problems that developed with communication and his behaviour then unfortunately blighted his time at school (oterh factors contributed too but fundamentally I think his poor start affected his entire education, really).

He had repeated sets of grommets which I suppose helped a bit, otehr options (such as dietary changes) were not considered - but if it was DS now, I would definitely try cutting out dairy etc.

Dss always drunk loads of milk and it may be anecdotal but I'm sure it didn;t help.

He also changed schools several times which hindered him and despite repeated requests - and promises of additonal help, from boht his secondary schools, this was never forthcoming. Basically I don;t think anyone realised that he was actually quite deaf a lot of the time, and his lack of concentration etc was down to the fact that he simply tuned out because he couldn;t hear evry well.

By teh time he was a teenager attitude problems had set in which made the whole situation very difficult to sort out.

he left school with very poor GCSE grades despite being a bright and resourceful lad.

A cautionary tale - make sure you get the help he needs from school, GP, anyone involved, now.

And yes, do point out to people that he can;t hear very well.

It's also worth mentioning that glue ear also causes balance problems, which might explain why your son had difficulty at kickboxing. My DSS who is nearly 6 is having problems with glue ear, what his bm got really frustrated at was how long we were having to wait to get him seen by a consultant. In the end we paid for him to go privately for a consultation, because we were concerned about when he returned to school he would have trouble keeping up, as his hearing was getting worse.
Happily, it has cleared up for now, and hopefully it'll stay that way.
Good luck with your son.

I realised that, as did not even think of it untill he started falling over during the warm ups adn hurt his foot it really was a disaster and I should have thought it through better, i was trying to cheer him up.

I will cut out dairy and reduce sugar and also get some xylitol containing chewing gum read in a medical journal that it can help

Oh and have read the riot act to dh about smoking in livingroom at night which he has begun to do , and drives me insane, so that is going to stop immediately as apparently even if you air the room the particles can affect their ears

thanks frayed knot and Catalepticdru

I will called his consultants secretary to see if they can see him before his appointment on the 1rst of feb. last week gp sadi there is nothing anyone can do and sent me on my way, today nice gp prescribed otovent and realsied that grommets wwere out already, so last weeks one must have had his eyes shut when he looked in ds's ears

I know what you mean.
My ds is 5, and has had glue ear since he was about 12months old - he has had lots of problems because of it - and yes, I tell people that he is hearing impaired, because he is!
We had a problem when he started school as, although it was on his records, his class teachers didn't know. He got very unhappy, was told off every day for things that he hadn't done (because he didn't hear that he was meant to do them), until I checked with a teacher at half term that he was sitting where he could lip read - she didn't know he had hearing problems at all, he was a lot happier once they knew he had to lip read.
We have had lots of behavioural type problems with him (raging tantrums, sticking to very fixed routines, problems socialising) which I eventually found were normal for children with chronic glue ear. He was very slow to learn to speak ( 6 words at 2 years of age) and his vocab is not as large as most children his age...lots of problems caused by words which have more than one meaning etc.
After his first grommet op (age 3) he had 6 months where he was a different child - so lovely, but then the fluid came back and because he wouldn't comply with the 6 monthly audiology checks no one would believe that the problem had come back until he was 5 - he was then old enough for me to talk him through the audiology again, and he let them test him - they took him in for an urgent grommets re-vision.
Once again he was happy for a few months, but he's been telling me this week that he can't hear his teacher again (and he sits at her feet in class) so I'm wondering if it's worth taking him off to a private ENT (which is what I did when he was 3 since the NHS system had gone no-where for months) and getting him tested again.
Am also trying to work out if we can afford private school for him, as 30 children in a class is just too much noise.

To top it all, my dd has just been referred to audiology due to poor speech (although she doesn't have the behavioural problems so I hoping that she has more of a speech based problem)..

Goodness that is dreadful, I hope you get resolution for your son's deafness, it is such a hard thing to cope with for them.
I am going to home educate untill he can go back to his old school when we get to move back to our old area.

I hope you other child does not have to experience it also

It's so he is seen earlier bumbobear - every day that goes by without him having hearing is a struggle and a pain to watch. He gets 6 monthly reviews at audiology but by the time they have booked the appointment it is more like 8 months..if the grommets get blocked (which it looks like they have - again) 3 months after an appointment it is a long wait for someone to see him...during which he falls behind in his school work, loses friendships, and is absolutely miserable ( it is heartbreaking to have a 4 year old who to all intents and purposes has depression due to being in a world where he is continually told off and confused and just doesn't understand what is happening.)
And as jennyleeves said, I know people have kids with much worse problems...but it seems so unnecessary for him to be so sad.

Sorry I hope I am not being rude and hijacking but I have to jump in here. Have any of your children had serious pronounciation problems due to their ear infections?

My daughter has had repeated ear infections with effusion most of her life. She has had her hearing tested and they said it is "okay, not great right now". It has probably been bad for most of her life.

Her speech has been delayed but the biggest problem we are having is her pronounciation. It is so bad. I feel so sad for her. If you listen closely to what she is saying you can tell her sentence structure and vocab are great but she cannot pronounce so many sounds. I am wondering of she has some kind of verbal apraxia or if this is completely related to her ear infections?

Bumbobear - I work for the NHS too, and I have lost count of the number of colleagues who have heard a little about my son and gently ask me if he has autism of some sort, such is the effect on his behaviour.

Ds's main speech problem was lack of it - just no words, lots of shrieking and screaming though. When he tried to speak his pronounciation was poor but he got assessed by a speech and language therapist who believed that it was just the hearing...at 5 he is easily understood, but mis-pronounces new words as he mis-hears them.
DD on the other hand, has words, but only her nanny and I understand her most of the time..she is on a waiting list for audiology and SALT assessment - which is 9 months in this area. Hopefully by the time she gets assessed it will be obvious whether or not there's a problem. (she is 3 and a bit).

Anoah, how old is your daughter?

I was so relieved my dd was actually talking that I wasn't worried about her pronounciation until I took her to a birthday party for her (same age) friends and had 2 different mums approach me and ask what was the problem with her speech , so I rang the health visitor the next day and the HV has referred dd on to speech and language ( in our area S and L do an automatic audiology check, which usually happens about 3 months before the S and L appointment comes through)

Both my children have glue ear. My ds had it since birth but I was lucky to have a very good GP who referred me when he was 18 months old and begining to talk. He had his first grommetts at 22 months; one fell out just over a year later and that affected his hearing and behaviour even tho the other was still in.

I was lucky that I was seeing him with ds and just mentioned that dd had 'selective deafness' in conversation (I thought it was naughtiness) and he looked at her there and then and she had it too!

They both had grommets fitted (2nd set for ds) in August and are fine again now.

The specialist said that it is quite normal for children with glue ear to be 'stroppy'

I would do all you can to get him seen again and get a new set of grommetts ASAP - it makes such a difference to their life.

Ds also does not have cows milk - he has been on goats milk since a year or so old as it affected his eczema and rhinitis - not sure if it helps his glue ear.

Good luck

Thanks for your responses.

My daughter just turned four. Speech and language and ENT appointments are a long wait up here so we are getting nowhere fast. My older son is autistic with a speech and language disorder but no ear problems. So I don't know what to think regarding my daughter's problems.

She is starting to cry when people cannot understand her. She had a bad reaction to grommets and they were removed 18 months ago. We have been trying to get the ENT's to look at her again ever since.

My son is under the local child development centre because he has had orthopedic problems as well as glue ear. Frankly the glue ear has affected him more than not being able to walk confidently until the age of two and half. Being deaf is not trival and it does blight a child's life.

Andrew had grommets and they were a disaster. One of them fell out after two months and the other after four months. He had continous discharge and his ears smelt horrific. At the moment Andrew has 40% hearing and we are going to try hearing aids instead of grommets.

bluebear - that comment rings a bell , people thought my ds had all kinds of stuff then we first realised he was a bit deaf and then got the diagnosis of glue ear and when the grommets were fitted he sped ahead at school, but he changed schools after the summer and that brought problems but now it all happened again only for some reason the school think that grommets cure glue ear and did not see that as explaining his behaviour but i now see that a recent worsening in his concentratioin and ability to do task s when asked is again down to glue ear,

thank you to everyone who has posted and feel free to highjack the thread about related stuff as it is interresting and might help other mumsnetters

Message withdrawn

I know, it is dreadful yorkiegirl...I must admit when he got the grommets in March and he changed so dramatically, I did not think the Glue ear would come back myself I thought that was it ...but it explains how challenging he finds school in new area.

I hope your daughter's infection clears up, my ds's ear has become wet since seeing the gp this afternoon as he told him to hold his nose and blow up his cheeks and it painfully unpopped one which is now runny and sore, with what lewis described as a huge crack.
I hope this otovent thing has some effect.

It is enough to make you want to bang your head against a wall.

i can see now why he has regressed and I cannot believe it did not add up untill I started to notice the deafness at christmas

I hope all of us get an improvement for our children

Just wanted to add - even having grommets in, isn't enough if they get blocked with wax (which is what happened to ds's a few months after they were put in) - we tried prescribed medicine to shift the wax (wasted another 6 months) before he managed to actually do a hearing test which showed the problem and got his last surgery.
to all of you whose children have the pain of infections too - ds doesn't get painful or puss-filled ears, just full of fluid naturally.

There is a whole section on the national deaf children's society website about glue ear which may be useful. DS1 has glue as well as a permanent hearing loss and we are waiting for ent too.

just bumping this thread a little, yorkiegirl is your daughter feeling any better?
My ds is still the same, I can see the little evil grommet sitting there in his ear canal just out of reach, want it to fall out as that must be blocking things up too, but is completely deaf in that ear and the other one in blocked and pops intermittently, he is still the same and the consultant secretary did not even pick up last week when ever I tried to call so will be trying again tomorrow. don't know what to tell the school, I'm not sending him like this, they can send round welfare officer if they like.Have a home education person going to talk to the lea man about my case on tuesday to get at least initial verbal consent to withdraw as have been waiting nearly 2 weeks

Hi all - I wonder, have any of your children had tonsils/adenoids out as well as grommits? My ds's both had grommits plus tonsillectomy. Obviously it's a more invasive op but their ENT seemed to think that glue-ear was resolved much sooner this way, as enlarged tonsils affect the drainage of the tubes. Ds1 did suffer with tonsilitis but ds2 didn't although his tonsils were enlarged. Ds2's behaviour in particular was appalling. he head banged, had dreadful tantrums, didn't sleep (had sleep apnoea), night terrors, poor communication..... I could go on and on.

As I said it's more invasive but if children are having to have repeated grommit insertion it maybe worth bringing up with your consultant.

My ds had the works - adenoids and tonsils out, grommets in - he sounds identical to your ds2! Sleep apnoea, tantrums, no words, night terrors.
His glue ear cleared up after the op but was back within months because his grommets got blocked with wax...but at least his sleep problems were solved,

CRANIAL OSTEOPATHY *

Don't mean to shout it BUT by DS had glue ear, was down for grommet surgery but someone recommended I try CO and after 6 months glue ear had gone in one ear and was almost gone in the other.

JennyLee - your DS sounds worse off than my DS but I would really really really recommend giving CO a try.

I am in SE London if you want a recommendation. Nothing to lose?

We almost went down that route with dd KBear. The ENT wanted to make it a surgical hatrick with mine but she has significant heart problems that put her at risk under GA so we put if off. I got a recommendation for someone nearby to try oesteopathy. Other problems sort of took precedence though and she thankfully grew out of her glue ear at about 6.