DD (4 1/2) has glue ear. Can we demand action?

[nldm1]

About a year ago, we noticed that our DD suddenly seemed to be having problems hearing, especially when we were in a place with a lot of background and additional noise.
Our doctor reffered her to the ENT department at the hospital and she was diagnosed with glue ear.
She has attended 4 hearing tests since this point and is due another next week. Each time she is tested, her hearing is not good, but they say she manages well, considering.
The problem is that her hearing is compromised, but dealable with when there is no background noise.
She attends preschool 3 days a week and will start in reception class this coming September and we are worried that, unless action is taken, her enjoyment and education will be compromised and diminished.
Can we demand that they fit her for hearing aids, before this begins to seriously effect DD?

[PurpleSproutingBroccoli]

Not an ENT expert, but have a teenager who's had glue ear since she was tiny.

It looks like they're still in the stage of "active observation", which is the initial stage of treatment - so it is treatment that she's getting. The reason for this is that many cases of glue ear resolve without any treatment. This is sometimes done for 3 months after diagnosis, and sometimes for around a year. So this might be a stage at which you could ask the ENT specialist about what they're planning to do next. IME, ENT (at least in our area) is done with a very close awareness of the child's educational stage, so in fact it's quite possible that they have plans around this already.

As for "demanding" hearing aids, I'm not sure because that is only one of the options available for treating glue ear. More commonly, vents ("grommets") could be used, and/or they sometimes try a balloon device that the child inflates using their nostril. (Takes a bit of practice!) Hearing aids might be the first thing they consider if there's some reason that vent surgery is a bad idea (e.g. health reasons related to the anaesthetic).

I agree that hearing issues can affect a child in preschool, so you're right to ask the specialist how they plan to move forward. Also make sure the school know how to approach things. In my dd's case the school was accommodating in seating her at the front, but did not understand that she found loud noises confusing and upsetting, and had difficulty in social situations because she couldn't hear well. This led them to suggest that she was on the autistic spectrum (which, 10+ years later, it's clear that she isn't). At this stage, however, I'd be asking to hear the ENT's medium/long term plans, rather than "demanding" anything.

[PurpleSproutingBroccoli]

I should say that dd's glue ear is now resolved, but she still has issues with a perforated eardrum in one ear, due to repeated infections that were linked to glue ear. For the other ear, the vents resolved the problem and the vent hole healed fine afterwards.

[mummy1973]

Hi. I agree with purple. It probably seems that you're not seeing any action/solution and are frustrated?
Our dd had recurrent ear infections and couldn't hear well from 4-7. She did cope at school by sitting at the front and the teachers are loud anyway! Eventually her hearing did get to a stage where it deteriorated further and then she had grommets. They were in for a year before they fell out. By this time she was nearly 9 and went a year at a time without infections. She is 10 now and as her head/ears have grown I think they are starting to drain properly and her hearing seems OK.
My point is they do prefer to wait to see if it sorts itself as the child gets older. Grommets involves a general anaesthetic. My dd did keep up speech and schoolwork wise. Is yours?
Ask what the plan would be if things don't improve at the next test. At what stage would they suggest something else? Maybe having a bit more of a plan might help?

[nldm1]

Thank you.
We have discussed hearing aids v's grommets with the specialists and feel that, as glue ear is usually something that is grown out of, and also because the specialist we see doesn't feel that grommets are very effective, that having our DD put under with general anaesthitic, is a needless risk.
DD also wears glasses and took to these like a duck to water, so we feel she would get on well with hearing aids. Once she feels the benefits, we don't forsee any major ptoblems as she's quite mature for her age.
I think that, at the moment, we're just feeling very frustrated for DD, knowing that she is struggling to hear (though thankfully, she doesn't get too upset most of the time and just requires extra patience and we, and the preschhol staff, have learnt makaton) but that all that is being done are test that repeatedly show that there is a problem.
It just feels like a year is a very long time when it concerns a little one, considering the rate of learning at this age...
Thank you for sharing your experiences.

[PurpleSproutingBroccoli]

It sounds like she'd cope with them well, and the preschool are all set up to support her :) . If it reassures you, my dd has not suffered academically. AFAIK the main risk to education/development is when glue ear/hearing loss is undiagnosed, but you're already right on top of that. With dd, the school was aware of her hearing loss, but failed to understand the connection that this could also cause her some social issues. But if your dd's preschool has taken the trouble to learn Makaton, then I'd be hopeful that they would accommodate her in those ways too.

[GeorgeWinsor]

Purple - interested to hear about your DDs problem with loud noises, I'm wondering if my 2yo has hearing problems and she hates things like the Hoover, never linked that to hearing problems.

[PurpleSproutingBroccoli]

I think hating things like the Hoover (and hand driers in public loos!) might be a pretty common toddler thing anyway, George. Certainly my dd2, who has no ear problems, was terrified, probably more so than dd1. (She's not too impressed with them even now, at 12!)

What gave dd1 the most issues were loud voices, lots of people speaking at once, crowd situations. She was trying to process and separate/understand the voices, and everyone else seemed able to do it, but it all just sounded jangly and confusing to her. She couldn't express that at 5, so used to just cover her ears and cower. Similarly she would get upset in group situations, because of all the different voices coming at her from all directions. To the untrained eye it probably did mimic ASD, as that also involves sensory issues/hypersensitivity. But the school did know she had hearing problems.

[hippo123]

But hearing aids aren't going to 'fix' the problem. Grommets should in most cases. My ds has failed every hearing test since newborn. He was finally allowed to have grommets put in at 5. I think '5' is the magic age when things start to happen to be honest, before then they hope they will grow out of it, which a lot do. The grommet op was so simple and quick.

[nldm1]

Hearing aids would allow her to hear at a better level than she is currently hearing, and without the risks of a GA all for grommets that, from what I have been told and have discovered through research, don't always work and have a tendancy to not last as long as claimed, possibly requireing further ops and more GA's. We just don't feel that the risks are worth it when the ENT specialist we see has said that most children grow out of being susceptible to problems occuring due to glue ear around the age of 6 (a year and a half-ish away for DD).
I'm glad to hear that grommets have worked well for your DS, hippo123, but that's just not an option we are willing to consider for our DD at this stage.

[hippo123]

Fair enough . Yes I agree that hearing aids should help and they do say that most cases of glue ear do get outgrown. Our ent always said by around 5, not 6 though. If you think your dd will tolerate them then kick up a fuss and demand action. As I'm sure your aware hearing loss can be so disruptive to a young child. I've noticed my ds's behaviour has improved lots since his grommets. Teachers used to always complain he didn't sit down, concentrate and listen. They never seemed to understand the connection between his behaviour and his hearing! Good luck.

[nldm1]

I hope your ENT is more spot on with the age than ours as DD is 5 just as the school year starts, otherwise, her first year of school might be disrupted :-(
It's good to hear that things have improved for you DS with the grommets. We're very lucky with DD's preschool workers, but it's a shame that more teachers don't get training on how this sort of thing can effect children and how best to help them.
DD does occasionally get disruptive, but mostly we've found that she'll either narrate everything going on around her at full volume: "The fat woman infront of us smells funny" (in the supermarket!...argh!) or she'll nod and smile, pretend she's heard and understood and then off she goes to do whatever she fancies instead of what she's been asked to do.
Actually, thinking about it from the perspective of people who haven't experienced children with hearing problems, she probably comes across as naughty, when really, she's a sweetheart :-(
I'm keeping my fingers crossed that things go well on Monday and she's able to get some help to hear.

[hippo123]

Fingers crossed nidm1. Your description of smile and nod and then do whatever regardless sounds very familiar :-). And swimming lessons were a nightmare, and gymnastics in a large sports hall, as the sounds just echoed and ds couldn't pick them out. Therefore he didn't follow instruction, therefore he was 'naughty / doesn't listen' Thankfully things are much better now, but he's 7 and the ear infections, and therefore the severe hearing loss that they caused, have become much less frequent since the grommets. It so annoys me how people who should know better don't make any allowances for those with hearing issues. I hope things go well for you on Monday.