tag:blogger.com,1999:blog-6113641574975321616.post5860886355383907936..comments2024-03-01T04:27:08.864-08:00Comments on ~Our 'Young Warrior' Evan~ Living with Harlequin Ichthyosis: My World & IchthyosisDe Dehttp://www.blogger.com/profile/04523375694078425934noreply@blogger.comBlogger2125tag:blogger.com,1999:blog-6113641574975321616.post-78442842009590779102023-09-08T15:30:51.230-07:002023-09-08T15:30:51.230-07:00Great blog I enjoyeed readingGreat blog I enjoyeed readingBlake Durhamhttps://blakedurhamson.wordpress.com/noreply@blogger.comtag:blogger.com,1999:blog-6113641574975321616.post-79294899096557967902012-09-12T08:38:25.298-07:002012-09-12T08:38:25.298-07:00My son was born with ichthyosis too. He is 2 1/2 m...My son was born with ichthyosis too. He is 2 1/2 months old now. We are not sure yet what type he has, his skin biopsy was consistent with lamellar but the dermatologist stressed that this was not diagnostic. I find dealing with his skin a lot easier than dealing with my emotions regarding how people will treat him as he gets older. I know the day will come when someone hurts his feelings and I am trying to prepare myself for how to comfort him and help him deal with it. With it being such a rare disorder it's hard to find people who know what you're going through. I can't tell you how many times someone has suggested a certain cream or lotion because their child has eczema or psoriasis and they think it will help. We use a lot of aquaphor too and at the recommendation of the dermatologist we have been trying a few other products as well but haven't seen a big difference. I have concerns about the oral retinoids too and I don't think we will be trying those anytime soon.<br />My thoughts are with your family! Anonymousnoreply@blogger.com