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#23149 - 11/04/08 05:17 PM Re: Ears [Re: BritMum]
KimNL Offline
Member

Registered: 07/31/08
Posts: 146
Loc: Holyrood, NL, Canada
My daughter who is 5 (doesn't have ich) has had this done twice under general anaesthetic. It's not nice and there is some pain afterwards but our ENT says kids under 6-7 don't do well with clinic cleanings while awake. But when she goes back in December, if there is a hearing issue again (as there always is), he will TRY doing it in the office. Her issue is small ear canals. I'm guessing this procedure may be in Casey's future too.
_________________________
Kim
Mom to Casey born Feb 17/08(?LI/CIE), Sara born Feb 18/06, and Kaitlyn born July 2/03
Casey has been tested positive for a genetic mutation in the ICHTHYIN gene (which is indicative of either LI or CIE)


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#23162 - 11/05/08 08:22 PM Re: Ears [Re: BritMum]
yr Offline
Member

Registered: 07/16/08
Posts: 107
Loc: Ireland
Gary is 10 since May and Jack will be 9 at Christmas. Our g.p. was off one day and his partner insisted on trying to clean out Gary's ears by syringing them. He went ballistic! She also recommended using Audiclean, which you can buy over the counter. Our ENT guy says what he does is too severe to do without GA. I suppose that's where doctor's differ and patients die as they say! Gary does'nt need it 6 monthly more like 10 monthly whereas you could set your watch with Jack. Then again, Gary had fierce problems with his eyes and cysts but Jack did'nt.

Out of curiousity, where are you in the UK? Were you at the Ichthyosis conference in London by any chance in March 2007? We were....

Yvonne.

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#23163 - 11/05/08 09:28 PM Re: Ears [Re: yr]
BritMum Offline
Member

Registered: 07/25/08
Posts: 226
Loc: UK
We're in Lincolnshire and we didn't go to the conference. Our daughter wasn't born until Feb 07.

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#23164 - 11/05/08 08:50 PM Re: Ears [Re: BritMum]
yr Offline
Member

Registered: 07/16/08
Posts: 107
Loc: Ireland
We're in Limerick!

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#23191 - 11/07/08 01:56 AM Re: Ears [Re: BritMum]
TMPOL Offline
Member

Registered: 07/30/08
Posts: 44
Loc: Collingwood, Ontario, Canada
Hi Jx,

Myles is 17 months now and he has been to the ENT 4 times since birth. Our ENT also told us NOT to put anything that we have concocted into his ears. We only have to see him twice a year now too. He doesn't put Myles under, rather we hold him really tight and the ENT suctions and scrapes what he can(it is as much torture for us as it is Myles). He also gave us some drops to help loosen the skin. When we see that there is build up in his ear, we will use tweezers to pull it out, but not until you can grab it without entering the ear canal. Myles hears everything that we say and is starting to talk. We had his ears tested at 12 months and he passes. We will go back next month for a 18 month check to see how he is doing.

I hope this helps,
Cheers
Tara
_________________________
Tara, Rene and Myles
Myles born May 22nd 2007
Lamellar Ichthyosis

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#23251 - 11/12/08 03:03 PM Re: Ears [Re: TMPOL]
TiffanyJ Offline
Member

Registered: 11/06/07
Posts: 43
Loc: Jackson, MS
Both Treasure and Jackson get thier ears cleaned in the office every 2 months or so by our ENT. Jackson is 17 months and he did cry a little at first but at all now. I think most of his fuss was from being held down, not from any pain. Treasure, who is 4, has never cried. The scales in their ears are just as hard as the scales on their head. So they really need regular cleaning.
_________________________
Tiffany & Edwin White
Taylor 12/10/97
Treasure 6/23/04 lamellar and collodian
Jackson 5/3/07 Lamellar and collodian

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