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#25215 - 09/27/09 01:07 AM Re: Thanks [Re: Ivy's Mummy]
brandynsmum Offline
Member

Registered: 08/25/08
Posts: 269
Loc: Connecticut
Wow Emma I never thought of doing that but it makes perfect sense. Does it reduce the amount of scaling because the skin stays moist? I know for example that there is no scaling in brandyn's nappy area because it's always moist... I think I may try this on his legs as the scaling is so thick there it may reduce the scaling smile
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My name is Morgan. My son Brandyn was born on 26th June, 2008 in Sydney, Australia as a collodion baby and has been diagnosed with lamellar ichthyosis.

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#25219 - 09/28/09 06:33 PM Re: Thanks [Re: brandynsmum]
Ivy's Mummy Offline
Member

Registered: 10/31/08
Posts: 97
Loc: England
Morgan,

Ivy doesn't really scale as much as she used to. When she's going through a really dry patch then there are scales and flakes to go with it. But the majority of the time her skin is ok (for her!!). I can always tell when she's going to peel though as she scales then and obviously a peel follows. It's about once a fortnight at the moment.

Sometimes when we take the bandages off she's still greasy!! It's like her skin is at saturation point.

I just thought she didn't scale as much because she had a mild case - although no-one will officially confirm or deny his!! But maybe the bandages do have that effect. We were told when she was born that maybe she could just use the bandages at night if her skin improved but we still use them all the time. We change them daily in the morning and by the time she gets to night time they're soaked in cream so her skin stays relatively greasy during the night.

The bandages hold the grease to the skin. Sometimes though when we take the bandages off her skin is very flaky so it doesn't really keep the skin moist as a nappy would. I imagine it's because nappies are waterproof.

Have a go and see what you think. We use the green line for her legs, red line for her arms and yellow line for her torso. I know you can buy excema suits but we're quite happy with bandages. The next size up from green is blue.

http://www.activahealthcare.co.uk/products.php?q=ActiFast

I know this is a UK site but it could give you some ideas!! I hope Brandyn is well and keeping you on your toes!!!

Let me know how you get on.

x
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Emma

4 year old girl with Lamellar Ichthyosis

Baby girl unaffected

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