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#9723 - 07/07/01 09:16 PM Changes in skin condition over time
kristi3360 Offline
Member

Registered: 09/15/00
Posts: 50
My son has Ichthyosis Hystrix and I just have a question that I am hoping I will get some responses on. Any of you out there with any form of ichtyosis can answer. I am wondering if your skin condition was present at birth. Hayden's WAS NOT. His did not appear until he was about 4-5 months old. It started only on his left knee but has since spread to some other parts of his body. He is 2 1/2 now. Have any of you seen that from childhood it has progressivly spread or gotten worse. Or, did it stop at some point and not get any worse. Just trying to figure out if his is going to get as severe as some pictures I have seen or if it is about the way it is going to be. I hate that this skin disorder is so rare. However, I am thankful for this board. I would be a lost cause without all of you. Hope to hear back from you real soon! Thanks, Kristi Hawk

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#9724 - 07/08/01 02:08 AM Re: Changes in skin condition over time
Laura Phillips Offline


Member

Registered: 07/31/08
Posts: 12
Loc: Detroit, MI
Hi Kristi,

I have lamellar. Definitely present at birth (I was a collodian baby, which I think is typical of lamellar). I think my skin's severity was relatively constant almost immediately. If anything, I think my skin has gotten better with age (hard to tell whether that's some spontaneous improvement with age or improvements in treatments, or some combination).

I'll be interested to hear what other people say too. I think this may vary a bit by type of ichthyosis. I really don't know that much about ichthyosis hystrix myself (though I can totally empathize with you...even if it's bad news, you always feel better when you know what to expect. Sometimes it's the not knowing that's the worst of all).

Best,
Laura

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#9725 - 07/08/01 05:21 PM Re: Changes in skin condition over time
rjbrown Offline
Member

Registered: 08/23/00
Posts: 39
Loc: henderson,ky,us
I like Laura have Lamellar so this may not apply but my condition is better with time. I took a long time to see a change as I am 51 but to answer your question it is better.
RJ


[This message has been edited by rjbrown (edited July 08, 2001).]

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#9726 - 08/06/01 09:35 PM Re: Changes in skin condition over time
Chandra Offline
Member

Registered: 11/20/00
Posts: 707
Loc: Grants Pass, OR
Kristi,

I too have Lamellar Icthyosis. I was born with it, and was also a Collodian baby.

My skin has gotten better with age however there may be a time in your child's life when it gets worse. This apparently is often typical for kids with icthyosis and it occurs when their parents stop managing all the skin care and the child takes over. The only thing I would say about that is to make sure your child always knows what they can do to make themselves feel better, and if the child is doing so badly that they might inflict permanent damage on their skin (like repeatedly sunburning themselves or staying so dry their ectropian, if they have it, gets worse) then intervene.
_________________________
I am female, and was born in 1972 with Lamellar Ichthyosis.

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#9727 - 08/15/01 07:53 PM Re: Changes in skin condition over time
Elizabeth Offline
Member

Registered: 04/30/01
Posts: 6
Loc: Madison, OH
My son's didn't show up until he was 5 years old, but his skin was extrememly dry. They kept trying to tell me he still had cradle cap at that age. He has Vulgaris and is now 8 years old. I use Lac-Hyrdrin Five that I found at WalMart. I also use Lubriderm Advanced Therapy creamy lotion for extra dry skin. I ran a humidifier this past winter in his room this past winter and that seemed to help him from getting the black knees and dirty looking skin along with daily lotioning. Being summer now between the sun and swimming pool his skin has cleared up. I too have gotten a wealth of information from this board. Hope this might help.

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#9728 - 08/15/01 07:55 PM Re: Changes in skin condition over time
Elizabeth Offline
Member

Registered: 04/30/01
Posts: 6
Loc: Madison, OH
My son's didn't show up until he was 5 years old, but his skin was extremely dry. They kept trying to tell me he still had cradle cap at that age. He has Vulgaris and is now 8 years old. I use Lac-Hyrdrin Five that I found at WalMart. I also use Lubriderm Advanced Therapy creamy lotion for extra dry skin. I ran a humidifier this past winter in his room and that seemed to help him from getting the black knees and dirty looking skin along with daily lotioning. Being summer now between the sun and swimming pool his skin has cleared up. I too have gotten a wealth of information from this board. Hope this might help.

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