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?
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"