Ear infection/ deafness

[cheryl]

First of all hi to you all. I think I am in the right place, thought I would come and let you know about my son. Need someone to talk to too or I think i am going to go mad.
My son has had an ear infection since he was just 2 years old, he is now nearly 7 years old. They kept giving him anti biotics until it got that bad he ended up with a abscess behind his ear which pushed the whole ear forwards and out. He had to have a scan of his head (sorry forgot the name is it a cat scan) anyway he ended up having mastoid surgery to drain it, he then had to have many more mastoid operations to try and get his ears dry. He has had over 30 operations altogether on both ears.
The infection and surgery has caused him to go deaf, he can still partly hear depending how bad the infection is. He has been given hearing aids but he can not wear them because of the infection.
We have finally been awarded disability living allowence last month which is helping us out loads.
We went for an appointment today, which the main consultant wasn't there. The doctor we did see was saying basically there is nothing else in the world that could cure him its a disease in his ear that is very rare in normal cases it clears up, but in my sons case its not.
I am really considering a referal but I don't know where to I think I am going to see my gp to see if there is something we can do, We have heard of laser surgery I would travel anywhere to get the help. I just want my little boy to be better.
He has missed most of year one and now lots of year 2 in and out of hospital having operations.
If we don't have the surgery done on his ears it will spread to his brain and kill him, so we need to do something its just what.
Sorry my ramble over LOL.
Luv Cheryl xxx

 

[angelstardust]

I'm sorry I have never heard of this before, but I didn't want to read and run!

I think all you can do is keep trying to find someone who can help. Search the internet, push your doctors to find specialists. Never give up hope.

 

[cheryl]

Thanks Hun, Thats what we keep doing and I will never give up on my little boy.
Luv Cheryl xxx

 

[MUMOF5]

Hi, I didnt want to read and run either, surely there must be somewhere that you can be referred to for a second opinion. I hope you can get your little guy the help he needs, I cannot begin to imagine what it must be like to have to go throught that many operations.

 

[jo_79]

I dont know if this will help but i had unexplained bleeding from my ears at age 3 ans after that i continued to have the most horrendous ear infections constantly right through till i was 17. I went to the dr for another reason and he asked to look in my throat and told me i had to get my tonsils out asap. I had that done and have not had any problems or infection since then - am now almost 30. All the infections left bad scarring inside my ears and it has impaired my hearing - i was offered a hearing aid at age 9ish and refused cos i would've been picked on in school (sad i know but thats how i felt). But i just live with it now as im so used to it. I hope you find the answer you need to help your little boy x x

 

[NicolaT]

you could perhaps contact the Royal College of Surgeons or the Royal Society of Medicine Section for ENT and ask them who the BEST top guys are in this area for your son and get a referal there or even teh section of Paediatrics at teh RSM or ask your Paediatrician or ENT Surgeon who is the best - they really dont mind being asked for a name for a second opinion

Really wish you lots of luck XXXXXXXXXXXXXXXXXXXXXXXX

 

[Emmea12uk]

I just wanted to add that if you get dla, you may also get carer's allowance and a premium on any child tax credits. Hope you get it sorted though. Def agree with getting a second opinion.