6 year old daughter recently diagnosed

Hi all, I'm a newbie and have just come across the post. It's so nice to see others who are going through the same.

My son is 6 and currently recovering from a 5th surgery for his cholesteatoma. Previously they were canal wall up proceedures, but this time the surgeon has gone wall down. Purely as the disease is so prevelant and insists on eroding everything in its path. We found out he had the disease at 18months old, and more than likely was born with it. He had suffered from a repeat ear infection after holiday which eventually became so out of control he was issued IV antibiotics, and suffered with Bells Palsy because of the internal inflammation. It was this that triggered various ct/mri scans (under G.A) which diagnosed his condition. We have now been transferred to the royal national nose, throat & ear hospital London under the care of a professor who is at the top of his game and specialises in this particular field. The cholesteatoma has erroded the bony sheath protecting the facial nerve, attatched to the lining of the brain (never a good thing) and eroded the bones of hearing and eustation tube. Basically ravaged the whole ear. He has moderate to severe hearing loss and I had to fight for a hearing aid through my local trust, even though London agreed he needed it!

But... we jave spent the last 9 months infection free up until the latest op, a record and at one stage they were worried he would become resistant to antibiotics. There is hope! I know we face many more surgeries because of the extent of the disease and his hearing may stay the same or get slightly worse, but the benefits outweigh the risks.

Join the national deaf childrens society group as they have lots of useful information on hearing loss and related diseases, and can offer support if needed. Speak to school and explain as mich as you can your child needs support and what the disease is (most have never heard of it including GP's) and try to maintain a dry ear, so no swimming or head under water. Insist that your doctor gives oral antibiotics and aural drops, as drops alone do not clear up the infection in every case. You may be met with resistance, but from having blown eardrums on holiday and numerous other times from infection where drops alone were prescribed, the disease beats them every time.

And lastly, speak to your child openly about what's happening and what may happen in hospital- we pretended to be in an mri scanner at home and where the cannula will go and how they will put you to sleep / head bandage etc, just to prepare them for what will happen at the point of surgery. It all helps, as unfortunatley this is a long road ahead and the better prepared for hospital visits they are, the less stressful you are.

Good luck all, and let's hope for disease free ears in the future xx

Hello.

That's really good your daughter has seen doctor and it's a good thing he is keen on doing the surgery the sooner it's treated the better.

My son was under the hospital at evelina where he had a revised obliteration mastoidectomy his 5th one that was in 2015 done by professor Jiang.

We was discharged from there within 3 months post op but Jake's ear continued to weep smelly discharge and cause pain. We have now been refered to Ipswich hospital which we had our appointment today and the doctor was very disappointed and shocked at the state of my son's ear and had said Jiang who done a supposedly obliteration dis not do it at all how it should have been done.

Jake is now going to be having a complete obliteration to remove more infected tissue and colesteatoma and then he will be doing a blind sac closure.

Jake has been through he'll and back with it and was told today the reason he can't stand without being dizzy and off balance is because the nerve organ has been destroyed and that is never going to be made better and his facial nerve is also damaged so he is worried about facial paralasis.

My advice to you is if you don't feel confident in what doctors are saying then ask and ask again because if I hadn't I was told today that the extent of the disease and that it's very close to the brain Jake may well not have only lost all hearing in that side but we may be looking at a whole different picture for the worse rite now.

Good luck.

Hi Julie,

My daughter is 7 and was diagnosed with this awful disease 2 months ago after spending 3 yrs under ENT being given antibiotics and treated for glue ear, fortunately the last time she went for grommets in the surgeon found the cholesteatoma, she had a scan and told that she needed exploratory surgery as he couldn't confirm 100% , she had her operation 5 days ago and to everyone surprise the DR said it was huge and very close to her brain, she was in surgery for 6 hrs! Iit was the worst day of my life, she is doing well recovering and has to go back in 3wks she will have regular scans to check it hasn't come back, I am so grateful to the surgeon for what he has done and my daughter is fine so try not to worry (easier said than done, I have been told that it was so bad that she was probably born with it, it's a horrible disease and I still don't fully understand it but I hope everything goes well with you