Topic Options
#26879 - 09/15/10 12:37 AM Does it hurt?
kekonen Offline
Member

Registered: 12/14/09
Posts: 58
Annalie, my one year old, was diagnosed with lamellar. She usually goes about a month where we just maintain her skin, but then she has a huge, dry peel every 5-6 weeks. The past two nights she has screamed during her bath. She usually loves to play and splash around, but she won't even sit in the water now. For those of you with lamellar or older children with it, can it be painful? We put bath oil in her bath, but we've been doing this for almost a year now and she's never had a problem with it. She doesn't have any open sores except for a few small ones on her ears, so that doesn't explain the not sitting down thing. She also doesn't have a diaper rash. Any thoughts?
_________________________
Karen
Mom to Annalie born 7/17/09 (Mild Lamellar) & Hadley born 3/20/06

Top
#26880 - 09/15/10 08:14 PM Re: Does it hurt? [Re: kekonen]
lexy1742 Offline
Member

Registered: 02/21/06
Posts: 29
Loc: fresno california
are you causing this dry peel or is it happening on its own? if you are causing it then i would stop because it is very painful for our skin to dry out with LI
also if her skin is dry when she gets in the bath the water does sting a bit at least with me which would explain her fussyness
if you have any other question feel free to contact me im 22yr old with sever lamellar

Top
#26890 - 09/17/10 01:36 AM Re: Does it hurt? [Re: lexy1742]
kekonen Offline
Member

Registered: 12/14/09
Posts: 58
The peel is happening on its own. We always put cream on her several times a day and Aquaphor at night after her bath. It just seems that every month or so her skin gets bad even though we haven't done anything differently.
_________________________
Karen
Mom to Annalie born 7/17/09 (Mild Lamellar) & Hadley born 3/20/06

Top
#26905 - 09/22/10 04:18 AM Re: Does it hurt? [Re: kekonen]
MonkeyMama Offline
Member

Registered: 04/17/10
Posts: 44
Loc: Georgia
We see this with Cate, too (Jan 08).

We went for about a 2 year period where we couldn't even get her into the bath because she would scream so loudly in pain. It has gotten better.

We put Aquaphor on her skin at the very minimum in the morning and at night, but usually more like 3-4 times a day. We cut back a little when her skin is in a good stage, but when it's bad we're definitely doing it 3 or 4 times a day. When it's really bad and she won't get in the bath I'll put her in the shower with me and she seems to be able to handle that better.

Good luck! Please know you're not the only mom out there experiencing it!
_________________________
Sam
Mama to Cate (1/30/08), our little monkey.
Collodian Baby/Lamellar Ichthyosis

Top
#27162 - 11/17/10 10:19 PM Re: Does it hurt? [Re: MonkeyMama]
Sarah Helen Offline
Member

Registered: 05/31/03
Posts: 383
Loc: Twin Cities, Probably North of...
Hi - I know I don't have LI but I'm lurking here and your post caught my eye.

Sometimes, water hurts when I first immerse myself. Quite often it depends on the chlorine content. If your water supply is treated and the officials detect something they may increase the chemicals in your water supply.

I use fishtank testing strips to measure sometimes.

Just an idea.
_________________________
Sarah & Son
EHK & ARCI
"Today is the Tomorrow that you worried about Yesterday, and all is well"

Top

Moderator:  Laura Phillips 

Copyright 2012 Ichthyosis Information