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#16090 - 12/09/06 06:56 AM Re: Bathing suit ichthyosis
scarlettaz Offline
Junior Member

Registered: 02/25/01
Posts: 1
Loc: phoenix, az., usa
I think this might fit me, but since I don't have insurance, I can't get to a dermatologist to find out. My icthyosis was diagnosed as Llamelar when I was born but it is not ALL over. MY face is clear (other than zits, lol), my legs other than the back of my knees and the tops of my thighs are clear, my arms have no signs other than in the recess of the elbow a times. My feet and hands get dry and stuff but not in the same pattern. My neck is affected on the sides and back and it's in my scalp and ears. So...is this something anyone else has dealt with? Is it BSI?
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scarlettaz

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#16091 - 01/23/07 05:18 PM Re: Bathing suit ichthyosis
susanadale Offline
New member

Registered: 01/23/07
Posts: 4
Loc: Northwest Missouri, USA
I am so excited! This sounds so much like what my son has. My DS is 17 months old and has been diagnosed with Lamellar. His Derm, who's a member of FIRST's med board, has never seen it present quite this way, though. He has scales on his chest, tummy, diaper area, neck, and scalp (including his forehead). The rest of his face is totally clear. His legs are totally clear except for the backs of his knees. The outside of his arms is completely clear, but he has heavy scaling from his armpits down to the inside of his elbows. His hands and feet are clear. He sometimes gets some peeling skin between his toes and fingers, but it's cyclical and not severe. His back was almost completely clear (except right at his tailbone), but it has gotten a little bit dry and scaly with the cold weather (still not nearly so bad as the front of his trunk). The line between the scaly parts and unscaly parts is very clear---it is almost as though he's wearing a shirt, so I can understand the "bathing suit" name.

And when I say "clear", I don't just mean free of scales. The texture is totally different, like "normal" baby skin. I don't moisturize those areas at all and they don't change---his Derm was astonished at this. Initially, we applied Aquaphor from head to toe. But then these areas got smooth and stayed smooth. When it came to reapply the ointment, I found the smooth areas were soft, supple and oily feeling, while the scaly areas were dry and brittle. I figured, why not see what happens if I leave the smooth areas alone? So I have, and those areas are still doing great.

Actually, I'm in a bit of a quandary. I want to give little Peter the very best quality of life I can. It helps that he has a very happy, laid-back personality. It also helps that his older brother and sister love him and accept him as he is and don't seem to really notice his condition. But I can't help but suspect that spreading petroleum products over half his body might be detrimental in the long run. I'm also not crazy about the addition of Lactic Acid. Sure, it helps remove scale, but it does not change the texture of his skin at all and the scale comes back quickly. Is there a more natural way to achieve the same result?

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Susan
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Susan

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#16092 - 02/08/07 02:54 PM Re: Bathing suit ichthyosis
Mama T Offline
Member

Registered: 09/27/06
Posts: 17
Loc: Ellicott City, MD USA
Eline,

How did your doctor diagnose BSI?

Your description sounds a lot like my son Trevor's (2 years old) presentation of LI. He is mostly affected on his abdomen, diaper area, neck, armpits, and scalp (the most problematic area). Like Susan's son, the skin on Trevor's face and the rest of his body is soft, "normal" skin.

Genetic testing confirmed that Trevor has LI, but his derm is puzzled about why he's only partially affected by scales. He could only guess at the possible reason (something about different gene mutations inherited from my husband and myself).
_________________________
Jennifer

Proud Mama of:
Trevor / Jan. 2005 / Lamellar
Spencer / Nov. 2007 / Lamellar

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#16093 - 02/09/07 12:48 AM Re: Bathing suit ichthyosis
twinpapa Offline
Member

Registered: 09/21/02
Posts: 13
Loc: Cheshire,CT,USA
These descriptions match Jonathan (4.5 VERY active years - Lamellar) to a T. Arms and Legs clear except back of the knee, inner elbow, tailbone, scalp, etc.

We use a mix of 1 part PDS Extra Strength, 1 part Aquaphor, 1 TBS of Shea Butter which works wonders. P&S Liquid helps on his scalp but we have a hard time with scalp scale and itching.

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#16094 - 02/09/07 09:53 PM Re: Bathing suit ichthyosis
graciesmom Offline
Member

Registered: 02/10/06
Posts: 155
Loc: orange park, florida,usa
Everything you are describing sounds just like my duaghter's skin. We haven't had testing done yet but have been told that she has LI (a mild case). She was a collodion baby and once the skin came off she was extremely dry and scaly. At about 11 months her skin totally changed. Her face never scales and is very soft, her forehead gets dry at times as well as behind her ears. Her neck, scalp, armpits, behind her knees and elbows, and diaper area are affected. All these areas are very dry and scale at times. I hardly ever put lotion on her stomach and back during the day and her skin remains soft on these areas. I wouldn't say her legs, arms and face are totally clear. Although they never scale, the texture of her skin is a bit different than "normal" skin, it's just not as soft. The only thing different for us is that Grace's hands look the classic LI hands....very wrinkled and dry (and cracked at times between her fingers). Whats funny is that her feet look perfectly normal. Let me know what you guys think.

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