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Behaviour/development

28 months of monitoring glue ear...?!

4 replies

WhichWayWound · 21/01/2015 17:25

(oops had posted in chat)

DD was found to have mild hearing loss caused by glue ear, each test has been a flat loss below 35/ 40 hz.

It was diagnosed at 20 months at first, now at 26 months I've been told yet again to come back in three months after a third identical test. Said hospital doesn't do grommets until three, so monitoring it until then. Seems pointless even going! Might as well go back at 3 on their logic.

I'm upset at such a potentially long period of doing nothing as dd has near no language, understanding or speaking. I know it's more than the hearing loss that would cause such a big delay, but it can't be helping.

She's barely ever had a cold, let alone an ear infection, so I don't why it's been on so long. Surely there is a better approach though?

OP posts:
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AlmaMartyr · 21/01/2015 17:29

I'm sorry, that sounds really frustrating. Quite common though I think. Could you maybe have a talk with your GP or HV (or anyone else involved) and ask for their support? DS was very deaf with glue ear and I pushed everyone I spoke to for referrals. It worked eventually but I was lucky that I'd had a severe problem myself so they took the genetic link into consideration (had the same consultant!). Good luck with it :)

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TeWiSavesTheDay · 21/01/2015 17:34

I think you need to be pushy, bearing in mind her speech - can you ask for a second opinion? Or try changing care to a different hospital with a better policy? Theyhis is my next approach with my just turned 3yo has hearing loss in one ear and speech delay. Huge empathy, I'm so frustrated! Advice from local parents with deaf children has been to be pushy. Point out the negative effect it's having - if you get other people to back you up about the effect on her hearing and the level of her speech delay - HV, SALT, nursery/preschool and write letters that's helpful as well apparently.
Ask them how they are sure it's only the glue ear causing the hearing loss. My DS gets glue ear but also has other issues that weren't obvious until after the glue ear cleared.

Have you tried the RDCS website? They have a forum that would probably be helpful in terms of finding out local policies. Also a phoneline.

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SilverStars · 21/01/2015 17:37

You can ring the great ( free to talk to/email) audiologist at the NDCS ( national deaf children's society) for advice. We Good support with a similar issue, but younger child of what treatment dc needed.

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Pinkandpurplehairedlady · 21/01/2015 17:38

We had the same experience with DS, he had quite a severe hearing loss caused by glue ear until he was just under 3. Fortunately they cleared by themselves and have stayed clear but he does have a speech delay caused by the hearing issues. Can you push to be seen by the consultant and emphasise how much it is affecting her development?

DS is nearly 4 now and really struggles with speech and making himself understood so we do quite a lot of private speech therapy with him which is helping a lot.

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