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#5296 - 07/28/06 03:40 PM Tubes in ears
Anonymous
Unregistered


Hello, my daughter Vanessa is 18 months old today. We think she has CIE. Thats the bestthey could tell us. The tests didnt come back pointing to a specific kind. Anyway, she has numerous ear infections since she was born. Nessa has seen an ENT but they werent ready to consider tubes yet. Since then she has had 3 more. We are going back to the ENT in Aug. Does anyone have tubes due to there condition? Or do you think this is normal kid stuff?

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#5297 - 07/28/06 05:00 PM Re: Tubes in ears
Francine Offline
Member

Registered: 07/29/05
Posts: 36
Loc: New Jersey, USA
Just a warning about the tubes. I have lamellar and my ENT tried twice to put the tubes in my ears...once when I was really young (about 5) and another time when i was in my early teens. Both times it was unsuccessful. The best we can figure is that due to my inability to sweat the tubes wouldn't hold on. I don't know if CIE is the same but it was just my experience. Instead, I go about every 6 months to have my ear cleaned and checked.

I do believe that they won't stop her from doing anything though. My mom did research on it way back then and didn't find a down side.

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#5298 - 07/29/06 01:22 PM Re: Tubes in ears
skittles71 Offline
Member

Registered: 01/16/06
Posts: 283
Loc: Catawba North carolina
Hi I can say we have had our share of tubes with my older son that has XLI.He has gone through 10 sets of tubes.We are now seeing a new ENT cause now he has greadulation tissue in his right ear.If all possible I would avoid the tubes.I think after all these years his ears just needed a little TLC.This doctor we are going to now says maybe having his ears cleaned 3x a week with vinager & alchol should help.He said with kids that have ichthyosis needs there ears cleaned at least once a mth and some more then that.So please try this first and ask your ENT about that.I dont want you to go through what we are having to now.Cause i think with 10 sets of tubes was really uncalled for.At the time you think your doing the right thing but now years later we are thinking different.And yes we are still getting infection in the ear but now we think all he needs is have his ears cleaned out a few times a week.We just went to this ENT this week and he did a culture on Cameron's ear to see what kind of infection it is.We find out on Monday what it is.IF you need to ask me anything I can try to help you as much as I can.After 15yrs dealing with this I know a little but still learning myself.My email is gym_mom2005@yahoo.com .Good luck to ya

Kathy

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#5299 - 07/29/06 04:14 PM Re: Tubes in ears
Anonymous
Unregistered


Thank you Kathy so much for the information. It was Helpful to NO this this. I wasnt exactly to big on the idea of tubes. I still think Nessa is way to young to consider it. However, I know what u mean about wanting to do the right thing. Like I fell she is too young. She may grow out of them. On the other hand I was thinking what if she really does need them. I think I.m def going to wait. Go with my instinct. Thank you again and I will Emial you if I have any more futher questions. Good luck with your son.

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#5300 - 08/04/06 12:59 AM Re: Tubes in ears
Anonymous
Unregistered


Kathy, we just came back from the ENT and we went over alot of things. It seems the DR agrees with you that tubes at this point arent the answer. He seems to think that the flakes are causing bacteria that are causing infections on the outer ear. No problems with the middle ear. we will keep cleaning them out and see what happens. She goes back in a month. For now he gave me these drops that are a steriod/with vinager. thanks again

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#5301 - 08/04/06 11:23 AM Re: Tubes in ears
wva Offline
Member

Registered: 08/08/05
Posts: 401
Loc: Detroit, MI, USA
I agree that the dry skin getting in the ears can definately cause the problems. Just remember that when you use stuff to clean them out to apply a little moisturizer or oil to a q-tip and moisturize the outer part that you can reach easily. Otherwise the inside of the ear can become very itchy from the eardrops drying them out. The eardrops can actually get the dry flakes out and cause more drying if you are not careful. So, it would help on one hand and defeat the purpose on the other. That's what has happened with me in the past before I started moisturizing the ear canal after using ear cleaners. After the dry flakes are out I actually put a glob of moisturizer and glycerin mixture at the opening of my ear and it gets in there and keeps it from getting the dry itch. But, nothing too thick or sticky like Aquaphor. Good luck and God bless! [img]http://www.ichthyosis.com/ubb/smile.gif[/img]

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#5302 - 08/04/06 12:15 PM Re: Tubes in ears
skittles71 Offline
Member

Registered: 01/16/06
Posts: 283
Loc: Catawba North carolina
Hey just wanted to give a update on my sons ear.And let ya know what the doctor said about using ear drops.He gave us a new kind but he said using alot of ear drops can keep moisture in the ear and will cause bacteria.So either way you go your not going to win.But Cameron has a staff infection right now in his ear he thinks that has came from all the times he has had his ear cleaned out.At some point the instruments he used on him was'nt cleaned very well.So if you take your child to get his/her ear cleaned out make sure those instruments are cleaned.And I would ask to cause this is your child hes messing with.We go back in 2 weeks to see how his ear is doing.I wish you the best with Vanessa if you need me im here.

Love Kathy

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#5303 - 08/04/06 12:51 PM Re: Tubes in ears
threerxli Offline
Member

Registered: 01/14/03
Posts: 515
Loc: virginia
My sons have XLI and keeping their ears clean has always been a problem. The skin build up and sometimes outer ear cleaning can be a challenge. Now that my boys are older it is so much easier for them to tell me that they cannot hear, or that their ears feel "stuffy" or "clogged", sometimes the teacher will report that they seem that they are not paying as much attention in class, or asking for things to be repeated. (shouting and talking louder than normal too)
I try not to let it get to that level, but keeping their ears free from build up is a challenge.
When my middle son was 2 we went through the same thing, the Dr thinking he needed tubes in his ears. We and the new DR I sought out, realized that a thin layer of Wax/dead skin particles had actually covered the drum. We did have to have that removed by an ENT and the process as I recall was slightly painful at the time. (there are numbing drops now) I am glad that we sought a second opinion, because tubes are used to drain the inner ear, from fluid thats not reabsorbed into the body and keeps regularly becoming reinfected. That WAS NOT what we had. If the boys get an infection from the ICHTHYOSIS, (not a regular illness that causes bacteria or virus to settle into the middle ear) If they get an infection from the ichthyosis, it is more like an outer ear infection, like "swimmers ear" would be. We clean and treat their ears similar to swimmers ear.
I think also talking to moms, that they see "potatoes" falling out of the ears..lol
I usually only worry when the potatoes stop falling out.
It is important however to keep their ears clean, so that proper seech can develope regardless of it being an inner ear or outer ear problem. At the time, my middle son had an underwater type speech. I guess it was natural for the first Doctor to assume that it was middle ear. His speech made huge strides and improvement once that thick layer of skin build up was removed.
It was hard for the ENT to see also by the way, it was glued so thin and firmly to the ear.
My sons speech went from not using "SSSSS" and "FFFFF" the subtle sounds, because he could not hear them. I know I have posted this eons ago on this website, but an example was that he would say "gee that duck?" He continued to say GEE for quite awhile even after the procedure because that was how he learned that word. But, he could sing his ABC'S and say "C" clear as day because he learned that after the procedure and could hear the subtle difference. I do not know if this helps, but for now I think you made the right decision.

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