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University of Chicago Dermatology For The Win

charlie-book




Charlie saw a pediatric dermatologist at U of C a couple of days ago - her diagnosis: severe dry skin, severe eczema, and a bacterial infection. 3 months this dang rash has been going on; he's been in the hospital, he's been on brief doses of oral steroids, and he's been on a regular antihisthamine, but he hasn't had an antibiotic since his previous trip to the hospital back in, hmm, October I guess. She gave us a new set of medicated skin ointments, much less scary than the ones we've gotten from our other docs--for one thing, all of them are only to be used on the red areas as needed, instead of all-the-time preventive application. And none of them have scary FDA warnings (although all corticosteriods are scary, particularly on the little folks). More importantly, she gave us a regular old antibiotic to give him for a couple of weeks - and after one dose and a night's sleep, the torso rash was GONE, and after two days' worth he's not itching any more and he's just got a bit of redness in his cheeks. WOO! Which isn't to say that the underlying problem is solved, but we have a good protocol in place for treating the dry skin and the eczema, we think, so as long as we follow it, we should be able to avoid really bad flares.
The next step is to take this info to the geneticist and see if perhaps the extreme dry skin problem is related to the limb problem or any other stuff.

We also went back for a visit to his allergist/pulmonologist, and we are cleared to start trying him out on new foods again, just avoiding "the big eight" - well, seven, since he seems to be ok with cow's milk. We will need to re-test everything he reacted to before, since having flareups after meals can mean a lot of things when there's an infection in play. He had some squash last night and was fine with it (unlike before) and today he tried a little barley (which was yech, but no rash). I'm off to buy a little food steamer in a bit, since my rice steamer is a bit unwieldy for quick baby purees, and I'm not going to give him anything with preservatives in it for a bit. (A lot of Gerber foods are preservative-free, but fruits and some other things need ascorbic acid to stay "fresh," and Earth's Best puts ascorbic acid in EVERYTHING).

So today I have a happy, not itchy baby, who is napping right now with his hand in a sock/mitten but without being swaddled and without any benadryl. And he played for 3 hours without a mitten or a hat on, which hasn't happened in a looong time. Pediatric Dermatology, YES.

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( 17 comments — Leave a comment )
txanne
Feb. 21st, 2009 05:25 pm (UTC)
Hurray! Also: GORGEOUS.
pnkrokhockeymom
Feb. 21st, 2009 05:38 pm (UTC)
Wooo Hooo!!!
haddayr
Feb. 21st, 2009 06:41 pm (UTC)
Oh, yay!

Éiden just ran over to the screen and squealed at how adorable your son is, too.

I concur. Adorable and breathtaking.
marydell
Feb. 21st, 2009 11:14 pm (UTC)
Thank you! He is a lovely boy, and we do strive to keep him at maximum cuteness at all times. (It makes an enormous difference in how people perceive his disability, alas for the world we live in).

Do you have pics of your wee one(s) online? Cool name, Eiden.
haddayr
Feb. 22nd, 2009 01:22 am (UTC)
Not publicly; Arie requested that since I went and used his real name in my columns and on my blog that I not post photos of him, which seems fair. I'm defaulting to that for Éiden, as well.

I wish I'd used cute nicknames for them like other people often do for their kids, but what's done is done.
marydell
Feb. 22nd, 2009 04:13 am (UTC)
Yeah, I sometimes think I should have done that for Charlie, but I derived so much hope & strength during the long long wait for him from other infertile & adoptive moms posting about their kids that I want to pay that forward to other moms (and their future kids!) Also, I don't belong to the "you must be inspiring!" school of disability parenting, but at the same time I would like him (and me) to be late-night google resources for someone who has an opportunity to parent a baby with a limb difference. If he doesn't like it when he's older I'll friend-lock his pics and related posts.

Also I can't think of any nickname for him, except "the poopinator," which would probably not make him happy.
vcmw
Feb. 21st, 2009 07:01 pm (UTC)
Yay! Good medicine is an awesome thing. And Charlie looks exceedingly adorable.
fledgist
Feb. 21st, 2009 07:53 pm (UTC)
That's wonderful!! I can imagine how anxious you've been.
browngirl
Feb. 21st, 2009 09:01 pm (UTC)
Hooray!

And oh, he continues in extreme cuteness.
ashnistrike
Feb. 21st, 2009 09:15 pm (UTC)
Oh, good. I'm glad you're finally finding some momentum on this.
gailmom
Feb. 21st, 2009 10:42 pm (UTC)
yay!!!!! for happy baby...and yipee!!! that someone seems to be finally figuring it out! :D
jerusha
Feb. 21st, 2009 11:05 pm (UTC)
Yay Dermatology!

I entirely support your desire to avoid foods with any additives whatsoever, and feed Charlie whatever you find appropriate.

However, I wouldn't worry about added ascorbic acid in foods as a worrisome preservative - although it's included as an antioxidant in the baby food. Because the other name for ascorbic acid is Vitamin C. And it's a water-soluble vitamin, so anything he doesn't need is simply excreted.
marydell
Feb. 21st, 2009 11:20 pm (UTC)
I'm not actually an anti-chemical person (although I should be! I just haven't worried about it before) but he may be allergic to corn, and US-made vitamins tend to be corn-derived. We've noticed he reacts to all prepared-babyfood fruits and some vegetables, and ascorbic acid is what they all have in common. He also reacts to any skin cream with a vitamin in it. *sigh* So it's either because they're corn-derived, or they're made in a plant full of mold and salmonella like other processed foods, or something! So I'll be cooking "fresh" food for a while, inasmuch as anything in a big urban area can be called "fresh."
unhappytriad
Feb. 22nd, 2009 02:23 am (UTC)
Hooray for less rashiness!

You can say what you like about bacterial infections, but for the most part they're frickin' TREATABLE. I just love it when you can make a baby BETTER all of a sudden!
(Anonymous)
Feb. 22nd, 2009 07:49 am (UTC)
Hooray for less rashiness! Hooray for adorableness! Charlie is unbearably cute; he should come with a warning label.

Sarah
jry
Feb. 24th, 2009 01:14 am (UTC)
Such good news. And such a cute icon. Yay!
cloudscudding
Feb. 25th, 2009 11:36 pm (UTC)
I'm sure that's a huge relief. Thank goodness, and may the goodness continue.
( 17 comments — Leave a comment )

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