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#23058 - 10/29/08 09:52 PM Help with EHK
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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#23059 - 10/29/08 09:48 PM Re: Help with EHK [Re: may3332]
may3332 Offline
Member

Registered: 08/01/02
Posts: 15
Loc: tacoma, WA
Melissa Yang

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#23064 - 10/30/08 12:57 PM Re: Help with EHK [Re: may3332]
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
How do you bathe her?
_________________________
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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#23065 - 10/30/08 02:43 PM Re: Help with EHK [Re: Hearsay]
Sarah Helen Offline
Member

Registered: 05/31/03
Posts: 383
Loc: Twin Cities, Probably North of...
Hi Melissa,
is the thickness causing pain or restricting her movement? How are her blisters?

There can be different goals in reducing thickness and different methods to get there. With myself I don't worry so much about the thickness but try to keep down the blisters and ensure that I full range of motion.
_________________________
Sarah & Son
EHK & ARCI
"Today is the Tomorrow that you worried about Yesterday, and all is well"

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#23078 - 10/30/08 08:08 PM Re: Help with EHK [Re: Hearsay]
may3332 Offline
Member

Registered: 08/01/02
Posts: 15
Loc: tacoma, WA
We bathe her in oatmeal bath and johnson & johnson oatmeal bubble bath only. She cant tolerate soap

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#23079 - 10/30/08 08:14 PM Re: Help with EHK [Re: Sarah Helen]
may3332 Offline
Member

Registered: 08/01/02
Posts: 15
Loc: tacoma, WA
I have been good about reducing blisters. The thickness causes her pain to the point she cant walk.

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#23081 - 10/30/08 08:41 PM Re: Help with EHK [Re: may3332]
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
Do you do any sort of rubbing for exfoliation?
_________________________
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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#23083 - 10/31/08 05:43 AM Re: Help with EHK [Re: Hearsay]
may3332 Offline
Member

Registered: 08/01/02
Posts: 15
Loc: tacoma, WA
have always been afraid of hurting her. Is there a gentle kind? when she flakes she bleeds sometimes. We were seeing the same doc since birth till December last year and she never mentioned exfoliating her with a scrub neither has the new doc that is referring us to the University of WA. For dealing with this for 6 and a half years, I still have aot of questions. I appriciate your help

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#23090 - 10/31/08 09:18 PM Re: Help with EHK [Re: may3332]
Les Avakian Offline


Member

Registered: 08/13/00
Posts: 680
Loc: Fresno, Calif. USA 93705
Hello Melissa
Welcome to our site. Our National Ichthyosis Registry is located at the University of Washington Dermotology Dept. The program director of the Registry is Dr. Philip Fleckman. He is a member of our Medical Advisory Board of FIRST, and is one of the most knowledgable, intelligent, and easy to talk to doctors I have been priviledged to know. Also, our FIRST website is www.scalyskin.org and you can contact Jean Pickford or Moureen Wenik at:info@scalyskin.org.Moureen is the program director of our Ichthyosis Support Network, and she can also put you in touch with mothers of EHK children. Take care Melissa
Sincerely,
Les
_________________________
Les Avakian

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#23091 - 10/31/08 09:24 PM Re: Help with EHK [Re: Les Avakian]
Sarah Helen Offline
Member

Registered: 05/31/03
Posts: 383
Loc: Twin Cities, Probably North of...
Hi Melissa,
I've always had problems with exfoliating as I can't really scrub or it hurts. Things that I found to work was an overnight creaming session followed by a nice long soak in the tub. Once the skin is getting "water logged" and whiter looking I would actually roll it off. I use the palm of my hand to create some friction and start lightly scrubbing back and forth. The skin comes off in long rolls.
Areas to concentrate on are the back of the knees, ankles and hips for walking and the back of the shoulders and inside of the elbows for arms.
I know it is frustrating and when I was six I didn't have any patience for this stuff. There are lots of people with tips and tricks to augment the professionals that Les mentioned above. Together we can help make each other comfortable.
Good luck.
_________________________
Sarah & Son
EHK & ARCI
"Today is the Tomorrow that you worried about Yesterday, and all is well"

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