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#23093 - 10/31/08 11:06 PM Re: Help with EHK [Re: Sarah Helen]
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
Keep in mind that we have a somewhat different type - it acts and looks like EHK but does not blister.

We put the boys in the shower for extended times. I let them soak in the water/steam for a good 15-20 minutes, then get in with them and start rubbing like Sarah described. I have found that starting on the sides of the nose, the sides of the neck, around the shoulder blades, the collarbone or the armpits gets some of the skin to roll off. I use the removed skin as a source of friction to continue in other areas and do as much as I can until my hands start to prune.

Some days it hurts, but generally, even though the shower is unpleasant, afterwards results in more comfort, less smell, less itch, and better walking. For our type, we also file the hands and feet, but they are thick and calloused and full of cracks if we don't. That definitely hurts, but again, the week of comfort outweighs the hour of misery from filing.
_________________________
Jennifer
Ichthyosis-en-Confetti Type 2
Husband, Nathan - 10, Elliot - 7, Oliver - 4, all affected.
I also have an unaffected daughter, age 8.


email: jennifer at confettiskin dot com
facebook - find me on "ichthyosis mommy spot" or "friends of ichthyosis"

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#23094 - 11/01/08 05:04 AM Re: Help with EHK [Re: Les Avakian]
may3332 Offline
Member

Registered: 08/01/02
Posts: 15
Loc: tacoma, WA
thank youu sooo much for the info

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#23095 - 11/01/08 05:07 AM Re: Help with EHK [Re: Sarah Helen]
may3332 Offline
Member

Registered: 08/01/02
Posts: 15
Loc: tacoma, WA
Thank you for the idea I will try it. I really appreciate the help. I am going through a hard time with her skin.

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#23096 - 11/01/08 12:33 PM Re: Help with EHK [Re: may3332]
Deidra Offline
Member

Registered: 03/08/02
Posts: 162
Loc: Lancaster, Ohio USA
Have you tried the sea salt baths? You can go through some of the archives for posts about those. Also, what helps Evan (16 yr. old boy, EHK) the most are daily long soaks. He bathes at least 45 minutes every day before school. He doesn't wash much (he's a 16 year old boy) which means not a lot of actual exfoliation going on. But the long baths help keep his skin more comfortable. We currently are not using sea salt.
Deidra
_________________________
Dee

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#23105 - 11/02/08 03:40 AM Re: Help with EHK [Re: Deidra]
may3332 Offline
Member

Registered: 08/01/02
Posts: 15
Loc: tacoma, WA
No I havent because before we came here we were told that the sea salt would burn her. Recently we went to the ocean for the first time and the water didnt hurt her. I am thinking about trying the bath. Thank you for the suggestion

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#23128 - 11/03/08 02:51 PM Re: Help with EHK [Re: may3332]
Sarah Helen Offline
Member

Registered: 05/31/03
Posts: 383
Loc: Twin Cities, Probably North of...
I second the sea salt idea! It seems that the salt in the water conteracts the pain of the chlorine or other chemicals used to treat it. My guess is that it is more "ph balanced" and therefore less painful.

Have you tried using Aquaphor (ask your pharmacist for it)? Using the bathing routine and the aquaphor will probably make her comfortable enough to move freely.

Please know that we all go through hard times, and they end. We've been there and understand the frustration. Do your best to make her comfortable and remember that this condition goes through so many phases that this will end soon.
_________________________
Sarah & Son
EHK & ARCI
"Today is the Tomorrow that you worried about Yesterday, and all is well"

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#23144 - 11/03/08 11:25 PM Re: Help with EHK [Re: Sarah Helen]
Deidra Offline
Member

Registered: 03/08/02
Posts: 162
Loc: Lancaster, Ohio USA
I ditto the aquaphor idea. The first time I really started using it on my son steadily after a LONG break, he was in about the third grade. He came home and wiggled his fingers and said "look mom, I can still do this!" He hasn't been without it since.
Dee
_________________________
Dee

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