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#23061 - 10/30/08 06:36 AM Help!
may3332 Offline
Member

Registered: 08/01/02
Posts: 15
Loc: tacoma, WA
Hello all
I havent posted in a long time, however I am need of some help. My daughter is six now and has EHK, her entire body is covered and it is starting to get thick again. The doc we have had for a year is giving up and refering us to the UW. She was talking about Miah getting laser treatments to help the thickness.
I need some suggestions about getting the thickness to be minimal without laser treatments. She cant take any of the medications because of deadly side effects she has already had. We have tried all of the lotions there are to try and prescribed topicals since birth and nothing helps her.

HELP!!

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#23070 - 10/30/08 05:31 PM Re: Help! [Re: may3332]
Sarah Helen Offline
Member

Registered: 05/31/03
Posts: 383
Loc: Twin Cities, Probably North of...
There are some answers to this post in the general section...

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

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#23120 - 11/03/08 12:07 PM Re: Help! [Re: Sarah Helen]
Glori Offline

Member

Registered: 08/14/00
Posts: 499
Loc: Elk Rapids, Michigan
I have taken a lot of flak for this piece of advice, but I am going to give it again anyway smile
I have EHK and had the same problems that you are talking about with your daughter. This is what the doctor's at U of M told me to do and it's something I still do to this day.
Take a regular shower. After toweling off, apply a mix of oil and water just to lubricate the skin and hold in some moisture. I then put on a pair of damp/wet cotton pajamas and then one of those plastic sauna suits over that. I sleep in that all night and when I wake up, the skin just ROLLS off of me. I usually have to spend a little time in the shower scrubbing myself clean, but it's like having brand new skin. I do it on weekends because I am usually a little tender for a day but it works and it works well.
On small children, I recommend doing either the top or the bottom, but not both because this can be a little dehydrating. My mom always made sure that I had water by my bedside and that I stayed hydrated. Yes, it's annoying and uncomfortable but the results are worth it for me and last for weeks at a time.

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#23146 - 11/04/08 04:53 AM Re: Help! [Re: Glori]
may3332 Offline
Member

Registered: 08/01/02
Posts: 15
Loc: tacoma, WA
thank you for the advice

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