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#13809 - 04/13/07 01:11 PM Eh, you knew I couldn't stay away! Derm. update
CShell Offline
Member

Registered: 11/10/05
Posts: 1193
Loc: Fort Meade, MD
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[/img]

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:

[img]http://i90.photobucket.com/albums/k277/CShellAK/c1.jpg[/img]

[img]http://i90.photobucket.com/albums/k277/CShellAK/c2.jpg[/img]

Cool, right?! lol
_________________________
Courtney
Mom to Julia

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#13810 - 04/13/07 01:17 PM Re: Eh, you knew I couldn't stay away! Derm. update
CShell Offline
Member

Registered: 11/10/05
Posts: 1193
Loc: Fort Meade, MD
In comparison, a picture from February:
[img]http://i90.photobucket.com/albums/k277/CShellAK/feb5.jpg[/img]

HUGE difference!
_________________________
Courtney
Mom to Julia

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#13811 - 04/13/07 01:22 PM Re: Eh, you knew I couldn't stay away! Derm. update
libby Offline
Member

Registered: 02/25/05
Posts: 356
Loc: USA
Wow, huge difference is right! She looks fantastic!

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#13812 - 04/13/07 01:52 PM Re: Eh, you knew I couldn't stay away! Derm. update
Angel24755 Offline

Member

Registered: 05/13/05
Posts: 633
Loc: PA
She looks great! Glad you like your new derm too!!! Also really happy that the new shampoo is working for you. You have a post full of good news...YAY! [img]http://www.ichthyosis.com/ubb/smile.gif[/img]

We used Elidel when Cade was tiny. It didn't help him with the dry skin or the redness that he had at the age we used it (I honestly don't think he was that red but for some reason our derm seems to think Cade and Leah are a bit too red...whatever). Anytime we used it above his shoulders he would cry that his eyes hurt and we would have to put eye drops in about 15 times before he was okay. I don't know if that's a common reaction or not but it certainly wasn't worth it to us...especially given the fact that it wasn't helping with anything. I know other people who use Elidel for their eczema (what the cream is actually made for) and they like it. I also want to mention that there was some talk of Elidel possibly causing cancer. It's on the FDA web site if you want to look into it. http://www.fda.gov/cder/drug/infopage/elidel/default.htm

Anyway...really happy to hear about all the great stuff in your post and as always, love the new pictures. She's so cute!
Lisa

[This message has been edited by Angel24755 (edited April 13, 2007).]
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#13813 - 04/13/07 01:57 PM Re: Eh, you knew I couldn't stay away! Derm. update
Angel24755 Offline

Member

Registered: 05/13/05
Posts: 633
Loc: PA
BTW...glad you didn't stay away as planned! [img]http://www.ichthyosis.com/ubb/wink.gif[/img]
Lisa
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#13814 - 04/13/07 02:13 PM Re: Eh, you knew I couldn't stay away! Derm. update
thehodgees Offline
Member

Registered: 01/29/06
Posts: 130
Loc: Woodstock, ON, Canada
I know we've talked about (possible)links between ich. and intelligence on this bb but with all the pics I've seen of everyone's kids, I think that there MUST be a link between ich. and "cuteness"!! [img]http://www.ichthyosis.com/ubb/smile.gif[/img]

CH
_________________________
***********
Craig and Sarah Hodgkinson (aka Dad and Mom to Matt and Ema)
Ema has been diagnosed with Congenital Ichtyosiform Erythroderma (CIE)

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#13815 - 04/13/07 03:34 PM Re: Eh, you knew I couldn't stay away! Derm. update
texlex99_dup1 Offline
Member

Registered: 09/28/06
Posts: 128
Loc: Brooklyn Park, MN USA
She really looks great!!! That hydrocortisone really works great, doesn't it? I'm glad that the derm oked it.

Becky

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#13816 - 04/13/07 04:50 PM Re: Eh, you knew I couldn't stay away! Derm. update
didi4nyc Offline
Member

Registered: 03/21/06
Posts: 168
Loc: ny
awww she is looking fantastic! I also like hydrocortozine ... it helps with redness and itchiness at the same time. I am glad you doctors visit went well. And I am glad you decided not to take a break from the board I would have missed your updates [img]http://www.ichthyosis.com/ubb/frown.gif[/img] I always look forward to reading them.

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#13817 - 04/13/07 05:08 PM Re: Eh, you knew I couldn't stay away! Derm. update
jrmiss86 Offline
Member

Registered: 06/07/05
Posts: 378
Loc: Marlton, NJ, USA
we use elidel on Alex when he gets really bad spots and we found that it works great. we started using it about a year ago with no problems. my doc said that using it before 2 was fine
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Heather
Mom to:
Alex (xli and Kallmans - 2/3/05)
Liz (3/16/07)

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#13818 - 04/13/07 05:19 PM Re: Eh, you knew I couldn't stay away! Derm. update
CShell Offline
Member

Registered: 11/10/05
Posts: 1193
Loc: Fort Meade, MD
Thanks for the comments everyone!!

I think the reason he wants to wait with the Elidel is b/c with NS, there's a higher absorbtion rate, b/c the skin is thinner than the average person's. It's good news to hear that it can work tho! I guess we'll see in a few months!
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Courtney
Mom to Julia

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