How to make anyone take my son's hearing issues seriously?

[nameiswigglywoo]

I'm just feeling so down and feel like I'm failing him.

He's just turned 2, no improvement in his speech since approx 16 months old, which was also when he started showing signs of being irritated by his ears. Constantly grabbing them, they smelt odd too.

He babbles a lot but is still saying just a few words. Only Dada and Mama are very clear, the rest he's trying to say but his pronunciation is way off.

He often doesn't look up when I speak to him, until I say his name really loudly (bordering shouting). At one point I was really worried about autism but the more I read about it, I think it's more of a hearing issue. I had endless problems and operations myself with my ears until I was a teenager.

He has glue ear but we have to get it checked again in Feb to see if it's still there. He's had 4 rounds of antibiotics in 7 weeks for ear infections/tonsillitis. But the doctors keep shrugging it off as normal as a swab came back as nothing "sinister".

They don't usually fit grommets until they are 3 apparently. So what can we do?! Just wait another year pumping him full of antibiotics and delaying his development even more.

Sorry that was quite the rant, I'm just hoping someone who has had experience with this will come along with some advice.

You could try asking your health visitor for a referral for a hearing test.

I would also start teaching him baby signing, it’s surprisingly effective & will avoid him getting too frustrated. There will probably be a local group near you or you can get Sing & Sign videos off the internet. They teach the signs as actions to songs so it’s fun for them too.

Ds started ear infections at around 10 weeks old, and it would have been 5-6 rounds of antibiotics in each 7 weeks after that until he was 20 months and got grommets.

Was this the GP saying wait or ENT? If Gp, then request a referral to ENT for hearing test. Not that it can be accurate at that age, ds was very adapt at working out how to appear as though he could hear.

If it's ENT, then actually they sort of are right. Ds, as I said started at 10 weeks and that was it. But dd1 also had a bout of similar to your ds at around 14 months, but has had an infection I think twice since then (she's 18yo now!) so in her case wait and see would be better.

If it's ENT in February, that's actually really good timing. It's middle to end of winter, so he should be at his worse, and you have then had a length of time to see if he's getting worse or coming out of it.
If you have ENT at say April, they tend to say wait and see next winter as they'll be improving now. If it's July/August time then even my ds, who is extreme, is usually fairly free then and you can get a bit of fussy mother there's no issue

The other thing is that don't focus on the infections as the reason for grommets. Grommets do not guarantee that infections will stop. Did in Ds' case but that isn't the reason. You need to focus on the lack of development and hearing. That is much more likely to have them listening.

And it might be worth asking the GP if there's any chance that the ear infection is the same one reoccurring rather than a new one. In which case sometimes a double course of antibiotics clears it.

I would push for an ENT referral if you haven't already had one. Ask both the health visitor, and the GP. Once you are in the system it's a lot easier as you can then self refer (or at least we could) to ENT dept. The ENT may be able to refer you to speach therapy as well, at our local hospital the two depts work very closely together. My DS started speach therapy at 2 but that was fairly specific due to his cleft palate, but they can/do see children quite young if required.

speech even. I always misspell it! You think I would know after the number of years I've spent attending speech therapy appointments!

I would also push for an ENT referral so that even if they wouldn’t do grommets yet, at least he’d be on the radar.

Did/does he have CMPA? IME at lot of children who are particularly snotty are actually reacting to lactose. It’s worth seeing if reducing his intake makes any difference ahd discussing it with your GP.

If it's glue ear, would he be too young for this? www.otovent.co.uk/ No idea whether it works or not but I stumbled across it while looking for ways to clear water in my ear a few months back.

This is serious OP and you're right to be worried. Persistent glue ear can lead to mastoiditis (google it), as well as delayed speech and delayed development of all kinds. My DS2 had all the above and not only ended up in hospital for 12 days on intravenous antibiotics, but he was hugely delayed in his speech and development as a result and we had to have intensive SALT with two therapists, plus lots of work at home to fix it. Your instincts are right, so keep demanding action. If your DS has not bee offered a hearing test, please demand that one is done. Can you pay for a private one? They are much more comprehensive that the ones we were offered on the NHS. If you have private healthcare through either of your work, use that, if necessary to get the tests and ENT referrals that you might need. Sadly, these days the NHS is very underfunded and it's only the most persistent parents that get anywhere.

My son had constant glue ear, we ended up seeing a private ENT specialist as I was so concerned about the impact on his speech. Our family gp recommended a dose of piriton before bed every night to help with the glue ear. Somehow it worked, the specialist didn't see how but it's worth a try in case it prevents the glue ear and infections. My son is now just over 3 and he doesn't stop talking! As he turned 2 he just about said mama and dada.

My ds had hearing loss from glue ear at the same age just to reassure you he is 12 and although he was late to talk by the time he started school he was talking fine and had a bit of speech therapy in primary but has had no long term effects at all.

Thank you all so much for the replies. I've been looking into some of the suggestions and they are really helpful.

He's had a hearing test that failed and they then said he has glue ear in both sides. No ENT specialist or Paediatrician yet though. We need to go back in the new year for a further hearing test and then get referred to specialist if there's still issues. But still no further action until the age of 3.

We've got another gp appointment coming up soon and I'm going to speak to him about cutting out dairy to see if that makes a difference.

@juneau thank you for your reply and I'm sorry to hear of all the issues your Son had

I hope you don't mind me asking but can you recommend anywhere that does the more extensive tests? I'm willing to travel anywhere to get it sorted.

My DD has mastoiditis a 5 months of age ( was the baby that cause the NICE guidelines to be changed.). She had almost complete hearing loss till she was about 3years old. They hold off grommets as often they grow out of the glue ear at 2.5-3years of age.
She is now on course for a career in musical theatre with an amazing upper soprano pitch perfect voice inspite of her hearing loss.
I ensured she looked and me when I spoke and that I spoke slowly and clearly taking care to enunciate words correctly.

nameiswigglywoo we used this hearing clinic in Cambridgeshire Chears, which was very good. If it's not convenient for you though I'm sure there are good, independent clinics available in other locations.

I work in a related field. This age is critical for language development and hearing loss could result in speech delay.

Try www.ndcs.org.uk for info?

www.ndcs.org.uk/family_support/glue_ear/index.html

This is the glue ear section. They have a helpline too.

I would bypass GP and go straight to Paed Audiology. You
may have to be referred via HV. Even if they are reluctant to fit Grommets yet, he will be in the system and they can give you strategies.