University of Chicago Dermatology For The Win
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.