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#6404 - 12/02/06 03:50 AM I have LI
Fly Away Offline
Member

Registered: 08/23/06
Posts: 6
Hi,
I'm 15 yrs old and i have LI is isn't a sever case but i still can't sweat. I was wondering if anybody had any more suggestions about creams lostions and shampoos, besides aquaphor. thanks my other name is pugs if you wanna respond aslso look for my other blogs.

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#6405 - 12/02/06 08:32 AM Re: I have LI
CShell Offline
Member

Registered: 11/10/05
Posts: 1193
Loc: Fort Meade, MD
Hi! Just wanted to say welcome to the forums! My daughter has Netherton's Syndrome (she's 14 months old, I'm 21 years old), so I don't really have any suggestions.

But browse around the site, it's been more helpful to me and my daughter than anything else I've found. [img]http://www.ichthyosis.com/ubb/smile.gif[/img] Welcome!!
_________________________
Courtney
Mom to Julia

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#6406 - 12/02/06 02:29 PM Re: I have LI
sideshowbob Offline
Member

Registered: 10/23/05
Posts: 209
Loc: Midwest, USA
Pugs,
Our daughter is two and has LI. Her case is also mild, but she can't sweat well either and we have trouble in the summer with her overheating. As far as creams/lotions go, I like Cetaphil lotion or Vanicream -- I use Aquaphor on her twice a day, and either of those creams through the day as needed. In winter, I've started mixing glycerin and sweet almond oil into the Cetaphil lotion. It isn't very greasy, and I am finding that I don't have to apply lotion to her during the day more than once!

Do you use anything to help you keep cool during the summer?
_________________________
4 year old daughter with CIE

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#6407 - 12/02/06 08:25 PM Re: I have LI
Fly Away Offline
Member

Registered: 08/23/06
Posts: 6
Thank you for your replies they have given me some good ideas.
sideshowbob,
as for your daughter i have a misty mate that you can purchase at any sprts store its sprays water of a nozzle and you fill it with water and ice it helps a lot and i very convient. I also have a cooling vest that i ordered of a website i belive there is a link for it on first for when she gets a little older and it goes around your whole body and it is a giant ice pack.
hope it helps.

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