Profound deafness in one ear

[mustbemad17]

DD is 5; since she was about 3ish i've known she has issues with her ears. She speaks with no volume control, has everything really loud or moans she can't hear it, sings tonelessly & she constantly has ear infections. I've been fighting for something, anything since then & finally today after a hearing test the nurse has referred her to ENT. Her words 'DD has profound hearing loss in her right ear' which should have been picked up long before now.

I'm so angry!! She has struggled with her speech because of this, I suspect that her balance is impaired because of this (she also has hyper-mobility so is imbalanced massively anyway). Two years of fighting!!!

Has anyone else experienced this with their DC's? I have no idea what the options would be, if it's something they can rectify, absolutely no clue. Looking for anything to suggest what the next step is!

No experience sorry but hopefully this will bump for you 🙂

Have they said what has caused it? From birth or trauma/infections etc? What next steps have you been given? Any support organisations you’ve been given details of?

There are many ways of managing this and moving forward - plenty of organizations and online resources so don’t worry. Just need to get the fuller diagnosis and medical professionals way forward first.

I have a son who was born deaf due to Rubella (he’s now an adult)
and things have prob changed a lot since he was very young but
in my experience - now your fight begins.
In your shoes I be bang on the ball about the latest hearing aids
and cochlear implants.
Lead and don’t be pushed.
Get the very bet expert advice you can for your child - her future is going to be impacted on the treatment she gets now.

And join your local Deaf Children’s Society, OP.
Good luck, Op

It's upsetting to find something serious is affecting your child and natural to wish it had been picked up sooner. I hope you will get good ENT advice soon. I'm not an expert but have picked up knowledge through having ear trouble for years.

The cause needs to be assessed before treatment options can be explored. For example, if the hearing loss is due to infections in middle ear there maybe simple options such as grommets to drain it and relieve pressure. If the actual hearing nerve is affected then there are types of hearing aids which can still help.

I am single sided deaf and manage very well with a BAHA (bone anchored hearing aid).

Hello! Similar happened with my son. I knew he couldn’t hear but I had to fight the GP for a referral (which we eventually got).

He has hearing loss in his left ear, they decided to go with grommets and, during the operation, discovered he had a huge congenital cholesteatoma.

It was removed in a 4 hour operation along with the whole of his middle ear (now has prostheses in there) and we are waiting for a date for the ‘clean up and check everything is okay’ repeat operation (41 weeks on the waiting list so far - but that’s another story!).

I can’t imagine what would be going on on there if I hadn’t fought so hard for the original referal.

Very well done on being so strong x

My now 17yo has no hearing in his left ear because of an inner ear infection at about 8. We didn't pick it up for a couple of years because he didn't complain. It hasn't caused him any problems - he does well academically, plays a musical instrument at a fairly high level and plays sport.

He has a hearing aid (name escapes me just now) which collects the sound from his deaf side and transfers it wirelessly to his hearing side. He really only wears it when he is in high background noise situations tho because he finds it a bit annoying and is mostly fine without.

Thank you everyone for your replies. I'm still really angry, think that's going to hang around a while!!

The nurse didn't give me any suggestions about what it might be, I guess I have to wait for ENT...I did a bit of reading & worried myself stupid because everything I read about 'profound' deafness wasn't all that positive 😱 She's struggling a little at school, her teacher has been great & switched her around so she is closer so can hear better - I think i'm just anxious xxx

Both of my children are partially deaf in one ear. We were assigned an educational support person. I'm not sure if this is nationwide of region specific but suggest you ask. They've been invaluable with their support and guidance and they are able to "translate" anything that was unclear. They also have more time to go into detail with things than at the hospital appointments.

Thank you Maverick I will enquire about that at her school xx