Topic Options
#29055 - 11/30/13 01:31 PM New and looking for information
scmomof3 Offline
New member

Registered: 11/30/13
Posts: 1
Hi everyone!

I am new here and looking for some information, as I know next to nothing about Ichthyosis, I didn't even know there were varying types until I began reading here a few minutes ago.

My daughter has a 10 day old newborn that we believe has this condition. Her father has it as well, but he isn't really in the picture and so we are pretty much on our own as far as figuring out how to care for this sweet girl. There were no signs of the condition at birth and the doctors/nurses we mentioned it to in the hospital had no idea what we were talking about.

At around day 7 she began developing blister like spots on the insides of her ankles and thighs. She is only 5 lbs and the majority of her clothes are all very big on her, except for the few preemie outfits I've been able to find. We thought maybe the blisters were from her rubbing her legs against the too-big clothes and have been dressing her in the baby gowns with the elastic bottoms to prevent further irritation.

As of today, one of her ankle spots has scabbed over, one looks better, and the thigh areas are large peeling areas similar to that of a sunburn. It's all very red and irritated looking. She has begun to develop small blisterish spots on one of her arms as well.

We've been covering her with vasoline because her other grandmother (who has the condition, as does her son) mentioned that this was helpful. We have an appt with our pediatrician on Wednesday.

In the time being, what can we do to help? Should we bathe her daily or no? Continue with vasoline, or is there something better? Any idea which form of Ichthyosis this might be? Anywhere I can go to read up on the condition to try and help?

Any and all information you might be able to provide would be very much appreciated! Thanks in advance!

Kristie

Top
#29056 - 12/01/13 02:12 PM Re: New and looking for information [Re: scmomof3]
Les Avakian Offline


Member

Registered: 08/13/00
Posts: 680
Loc: Fresno, Calif. USA 93705
Hello SCMOMof3
I would contact our ichthyosis foundation FIRST (www.firstskinfoundation.org) at 215-997-9400. Our great staff can provide information and put you in contact with ichthyosis families.
Les
_________________________
Les Avakian

Top

Moderator:  marcsmom, Sideshow_bob 

Copyright 2012 Ichthyosis Information