We went and met with Julia's new derm. from Johns Hopkins yesterday, I'm happy to say I really liked the guy (and his resident was pretty cute, too hehe)! He was really laid-back, and open to suggestions I had; which is a switch from the Stanford derms., who were really conservative with skin treatments (if they had their way at Stanford, we'd only be using Aquaphor and nothing else!). Though I guess I don't blame them, Jules was a lot younger when we were living in CA!
He actually treated a few different types of ichthyosis, and was pretty well-versed in Netherton's. Funny thing is, he mentioned a girl with NS that a friend of his (another doc, obviously) treats, and I think he was talking about one of Karla's daughters! lol Small world!
Anyway, so much to my surprise, he gave me a prescription for 2.5% hydrocortisone cream to use on Julia's diaper area and red spots on her face (it's mainly around her mouth and at her hairline, the rest of her face is pretty OK looking). Hopefully that'll help with the reddness and itching. That's been out of control lately.
He actually asked me twice if we were sure that Julia had Netherton's, because her skin is unaffected from the shoulders down. Said usually there're red spots (like on her face) all over the body, and generally don't have as much hair as she does. I told him definately, and that DH and I were carriers for it (we got ourselves tested a few months ago), so that ended the discussion of maybe it was just atopic dermititis lol I'll take it as a compliment [img]http://www.ichthyosis.com/ubb/wink.gif
He also mentioned a cream called Elidel, which works similar to how hydrocortisone does, except it's not a steroid. He said he wouldn't want to try it til she's 2, so when we go back in 4 months, we'll discuss it then. I did talk to Becky and Karla yesterday, who've tried Elidel, and they said they didn't notice a significant difference. So that's sort of disappointing! The doc was making it sound like something amazing!
We also will only have to go every 6 months or so (except for this next appt., to talk about the Elidel), which is a nice change from going every month!
I also have good news on our front - we've been using a shampoo made by Burt's Bees called "Feeling Flaky" and it's been AMAZING. Usually she has something similar to cradle cap form everyday on her scalp that I have to exfolliate with a washcloth or comb, but the shampoo has been breaking up most of the scales by itself, and her scalp's been noticably less flaky, so I'm REALLY happy about that! Her head's the most annoying (and time-consuming) part of her body to wash!
So that's about it! She was 18lbs 10oz today, and still about 29in. long. We're going to have to lower her crib tomorrow because she's figured out how to pull up and yank on the blinds on the window (her crib is under a window). She also keeps getting her feet stuck in the crib rails so I don't even know what to do about that. Maybe we'll just buy a toddler bed and be done with it lol
I used the hydrocortisone last night, and WOW.
Here's her pre-bath this morning:
Cool, right?! lol