Topic Options
#28916 - 05/12/13 02:33 PM Skin progression/changes post-collodion
AngeB Offline
New member

Registered: 04/18/13
Posts: 3
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

Top
#28921 - 05/15/13 05:51 AM Re: Skin progression/changes post-collodion [Re: AngeB]
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
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?
_________________________
Jennifer
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"

Top
#29098 - 12/28/13 01:33 PM Re: Skin progression/changes post-collodion [Re: Hearsay]
brina29 Offline
New member

Registered: 12/28/13
Posts: 4
Loc: north carolina
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

Top
#29099 - 12/28/13 01:39 PM Re: Skin progression/changes post-collodion [Re: AngeB]
brina29 Offline
New member

Registered: 12/28/13
Posts: 4
Loc: north carolina
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

Top
#29100 - 12/28/13 02:42 PM Re: Skin progression/changes post-collodion [Re: AngeB]
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
I sent you an invitation to your profile email.
_________________________
Jennifer
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"

Top

Moderator:  marcsmom, Sideshow_bob 

Copyright 2012 Ichthyosis Information