Glue ear experiences

[MHMum]

Hi, my DS was diagnosed with glue ear at birth. We had a really tough couple of years with him, but now he's had grommets fitted and life is just so different. Its the best thing we could have done. Looking back, if I'd had someone to share experiences with it would have really helped. I also get lots of people asking me about it now, as their children / friends children have been diagnosed. Does anyone know of a support network for parents? Otherwise I'd be very happy to start something informally, but I don't know how to start. Any suggestions?

My son had severe glue ear. He was almost kicked out of pre school and assessed for autism. It turned out that he very severe glue ear and he was bumped up the waiting list and had his adenoids taken out and grommets inserted.

Unfortunately the grommits were a disaster as they came out after 6 weeks. My poor son had 9 months of infections before the holes healed. Inspite of this, I do think the grommets helped as he was able to hear. He learnt to speak at three and half years old. When the glue returned with vegence my son had digital hearing aids for 18 months

The national deaf children's society gives support to families of children with glue ear. They have a forum for glue ear.

Glue ear is not taken seriously enough. Many children suffer for year because of watchful waiting. I think that temporary hearing aids should be prescribed more. It is understandable that doctors are reluctant to do grommets because there are major risks.

I hope this helps.

Thanks very much for your message. I'm sorry to hear that your poor boy had such a tough time. I do get the impression that because children are naturally challenging when they're little, it can get missed a lot. I wasn't aware of the national deaf children's society, despite searching on Google. I'll have a look now. Thanks again and I hope things are going well for you all now. x

My daughter has glue ear - GP looked at me like I was crazy when I said I suspected hearing loss at 1 year check and wasn't until spoke to health visitor at 2 that managed to get a referral. She has gone through 2 lots of grommets which were each effective for about 6 months and fell out after 9 months. She is 5 now and has opted for hearing aids (she has bilateral moderate hearing loss) which she got in the last term of reception. They have helped both in making sure she can hear in class and making teachers more alert to the fact that she may genuinely may have not heard them. she also gets a visit from a teacher for the deaf about once a fortnight to check she is coping and teachers are making most of classroom environment. She loves her hearing aids as she got to choose the colour of the bit behind her ears (pink) and of the moulds in the ear (clear with glitter).

Would definitely recommend them if glue ear seems to be a long term problem for your child. The term before we got the hearing aids the teacher did not compensate and as a result she went from being highly accurate with reading sh, ch and th to completely confused as must have sat mishearing them in the classroom.

I also had glue ear as a child which didn't resolve itself until I was about 10 and had my adenoids out. At the time grommets were out of fashion and I just had to cope - I distinctly remember having to fake laugh at jokes at lunchtimes that I had not managed to hear a word of over general canteen noise. I also used to mispronounce some words that have quiet endings if I hadn't seen them written down and had terrible spelling which my mum tried to resolve when I was a bit older by doing the crossword every evening with her. However It didn't hold me back academically and still managed to be girly swot...

Would definitely recommend NCDS forums although I do feel like a slight imposter due to the temporary nature of glue ear! Also would try and contact your local teacher for the deaf (although if you look at NCDS website you will see some councils are trying to cut the service).

Now as my name suggests I really ought to do some actual work :)

My 2.1yo son has this operation (plus adenoidectomy) on Wednesday. I am dreading it - the nil by mouth thing, him getting very upset etc. Anyone want to tell me what to expect?

Thanks GoAndDoSomeWork. Good to hear of your experiences. Grommets seem to be working well for DS at the moment, but I know its a long road and its good to know what other options are out there. I'm going to get in touch with NDCS, but I feel like an imposter too!

Musicmaiden - my son only had grommets, which was absolutely fine as it didn't cause him any pain. I found that once he was at the hospital he was too excited and distracted to worry about being hungry / thirsty. I was most worried about him crying and then going out cold, but in the end he had a mask with gas to put him to sleep. He didn't worry about that at all as he has a mask with his inhaler, so he went off without any trouble. The op only took 15 mins (was grommets only though). He cried for about 20 mins when he woke up, but as soon as I was able to get him out of bed he calmed down. After another little sleep he was really hyper and happy, I guess because he could hear. I suspect adenoids is a more uncomfortable, but they are very good at managing any pain.

Oh and I found the 'Ear Band-It' great for post grommets. We use the headband only in the bath or shower and the ear plugs it comes with, head band and a latex hat for swimming. I really think it helps to keep ear infections down. No swimming for a while after the op though obviously. You can find Ear Band-it on Amazon or several other on-line shops. Worth shopping around.

Anyone else advise on adenoidectomy? Very best of luck, please let us know how you get on.