Another post!

My littlest girl is 7 weeks old and was a collodion baby. She shed her membrane well within 10 days and as she was very red her dermatologist suspects NBIE/CIE. Since she left hospital her skin has become less red (although she goes purple when she cries!) and when settled is currently not particularly red. Her skin is very flaky (fine flakes that can be easily removed by massage or bathing) and she sheds pretty much everywhere apart from her head, palms and soles. However every day is different as her skin is so dynamic. I would love to hear how your kids skin progressed in the very early months to give me an idea of how these skin conditions can evolve/resolve over time as most of my daughter's doctors have little or no experience with Ichthyosis! Thanks from a frazzled, lotion-covered and confused mum x

Hello!!!

My kids don't have collodion, but generally, it slowly comes off over the first 4-6 weeks. Sometimes parts of it will stick around on the knuckles or something until around 10 weeks. After that, it will turn into some variation of thick plate scales, especially on arms, legs, and forehead, light white flaky bits that peel off and leave a trail of snow everywhere, red or pink skin, ectropion (where the eyes pull down to show a red ring), and possibly matted hair or a receding hairline. Some kids end up with everything, others get one or two of these.

Pretty much all of them deal with being underweight and overheating. Milestones like walking seem to be a bit delayed - like a month or two for ARCI.

Welcome to our party! I'll email you, too. this forum is sadly sort of dead anymore, but there's an active group or three on Facebook. I'd be glad to hook you up.

Also, have you been in contact with FIRST yet?

hey whats the group on facebook i would love to be in contact with other people who has this are knows anything bout it n so would my daughter she has lamellar an has never talked or meet anyone like her thanks

my daughter was born a with lamellar an had to be in the hospital for a month when she was born doctors didnt know alot about here so we had to take her to raleigh nc to see a doctor he has always been really good his name is dr neal prose eucerin or vaseline worked great for her when she was a baby I gave her three to four baths a day

I sent you an invitation to your profile email.