My 6 year old son has cholesteatoma in both ears

I joined so I could post to you. I am in the US. My son was diagnosed at 4. Get your son a nintendo DS or even better and IPAD mini. My son had the nintendo when he was little prior to getting the IPAD mini. Then when he is coming up for a cleaning, give him an itunes card. My son is seen at John Hopkins three hours from out home so I give it to him the night before and let him download games. Then he plays them on the way up. At your little ones age actually the nintendo would probably be the way to go and cheaper. Just give him a new game on the way there. Then when he is getting his ear cleaned let him play his games. This way they are distracted. Once we found this method he was much more still when getting his ear suctioned. Also give him ibuprofen the day before his procedure and the morning of the procedure. If you start it a day before it works better because it works by inhibiting production of things that modulate pain.

Good luck

O also the reason for the new game the day of cleaning is that first its a reward he will associate with seeing the doctor but even more importantly he will be more focused on the game (and not his ear) if the game is new

I must also tell you that there were times that two of us, usually myself and a nurse, had to hold him down while the doctor suctioned his ear. Not pleasant for anyone but much better than recurrent cholesteoma. That was mostly before we got the video game thing going. My son was mad about it but I explained to him that there was something in his ear that was going to hurt him if we did not get it out

Hi

We are at a much earliest stage and tho my son has allowed suction to be done

they've not been able to do it properly on any of the ocassions. This Thu he will be put under GA to

have a good clear out.

I have been worried about this happening in the future. Even tho he is 9 and can process perhaps

better then your son at 6. We too have used the DS idea on our last visit, it helped for a short while.

However I gave him a few drops of Passionflower tinture in water before going in and I saw a much

more relaxed person who allowed the procedure to be done twice with a short break in between.

Not saying that it was 100% obviously otherwise we wouldnt be using GA on Thu but it certainly chilled

him down. Might be worth a try☺

Hi Jennifer/Doula

Thanks you both for your replies.

Unfortunately we have tried the new game on the morning of suction but this has not worked.

My son is due to have suction tomorrow so I have started him on Ibuprofen today to see if this helps.

The consultant has suggested that myself and my husband will have to hold him down, which I am not looking forward to, although I know its for his own good.

I think I may also try the passionflower tincture.

I will try anything as at the moment, his hearing is getting worse as he is not able to wear his hearing aids due to the amount of build up in his ears.

I will let you know how his appointment goes tomorrow.

Thanks

I know this is very tough. My son had one surgery that would not heal and we had to go have the ear

suctioned every two to three weeks for nine months. And we had to hold him down every time. After a

while he started to refuse to get in the car. Then I had to sit down with him at his young age and really

have a heart to heart with him that I did not want to have. But it worked and after that he got in the car. Still had to hold him down when we got there though. He used to tell me why are you doing this? There is

nothing wrong with my ear see it looks fine.

He is having trouble with ear infections right now but the memories of us holding him down etc are not a big thing to him. As he got older we got the video games which helped him adjust and now he is, at

thirteen very cooperative and has been for a long time.

I will tell you though that I took him to counseling at around age 7 because he was obviously having

emotional problems related to all the operations he had and the pain involved My son had complications and has had 7 surgeries total and will be having another soon to help prevent the ear infections he has

been getting. Some of his problems were his anger towards me for taking him to the ear doc as he at

this young age did not understand. The counseling was helpful to him and also it taught me how to deal with and help him with these feelings instead of him needing to act out. I think its the main reason he is psychologically in good shape now.

I spoke to my GP yesterday regarding the fear my son has of anyone touching his ears and he prescribed my son a sedative medicine.

My sons appointment was today, I gave my son only half the recommended amount of sedative as I didn't want him completely unaware as what was happening during his appointment.

I must admit it did help, my son did start getting agitated whilst waiting in the waiting room and yes he did get very upset when we entered the consultants room.

My husband sat with my son on his lap and I did have to hold my sons head whilst he cried but he didn't fight nearly as much as he normally does and the consultant managed to remove all that he needed from inside the ear.

This to us is such a big step and yes although horrible having to hold a child down I know that it is definitely for his own good.

I'm hoping I wont need to use the sedative for his next appointment, as when the suction had been done and my son had calmed down, he did say that it didn't actually hurt.

Thank you very much for your support, its nice to know that your not alone going through all this.

Jeniffer I hope your sons next lot of surgery is a success.

Great new so glad to hear you found something that worked. What a relief for you.

I hope your son continues to progress smoothly!

Jennifer

micro suction is really important -persevere. I have experienced many problems not just with cholestetoma but also with the issues it raises. My daughter has had three major ops on her ears, she will have a fourth on Friday. My experince is that you don't mess around with cholestetoma. It has never shown up when looking into her ear, only when an MRI is done is it spotted. they don't mess around, she has an op. She has had her ossicles removed,mastoid bone etc etc. She now has Tuille phenomonon and gets nauseus, dizzy, echoing in her ear etc. There is nothing really that can be done for this. Because of the pain she experiences she now uses ear protectors, she is terrified of children and balloons etc etc. She obviously has hearing loss, but she is unable to wear hearing aids when she gets a bout of ear infection etc as this enhances the problems. I managed to get her custom made swim moulds from an audiologists. I hated the cotton wool and vaseline as a long term solution so managed to get these. I knew when she was young as this would be a continued problems as she has chronic bi-lateral cholestetoma with the complications of anti-convulsant syndrome so it won't ever get better, just on going ops. She has learning difficulties, but I managed to get her into St lukes at Redbourne. They have a deaf school right next door, so I managed to get her in to learn sign language. She is brilliant at lip reading, so I learnt lip speaking. Now I have resigned myself to the situation I focus upon management and helping to find way to strengthen her ability to communicate. I worry about the future, but I don't know what else to do, and try and focus upon her quality of life. I am dreading the op on Friday, I do everytime. It had never occured to me before that somone can spend six hours in operation on an ear, and I know of others that have been away for eight. Now one of the mums of another child with fetal anti-convulsant syndrome (out of the fifteen I know) has been diagnosed with cholestetoma and needs a major op. Because of Rhonnie I have done level two deaf awareness, and have experience and suddenly I find myself helping others, as many of the children have chronic re-curring ear infections. In the UK we are really lucky, I did not understand it properly until this. Make sure you have a surgeion you can trust - and who is brave enough to do this (as there are those that will not touch cholestetoma). Research how to make sure that there is no re-currence. microsuction and ear moulds go a long way to achieving this. if your chld reaches the need for a second op, arrange for regular MRIs. and seriously think about how your chld will communicate if this becomes a recurring problem.

Hi Kerri

my daughter is 9 now but she's had this disease since she was 3, she's had 4 operations and got another one in 6 mths to clean her ear again.

she hates it when they clean her ear out as well.

im annoyed to see on here that you guys go for a clean out very regular.  We only go every 6mths and cus of this things had started to build up so she needed an operation.