First off I've been so blessed by your kind words, prayers, offers to watch my kids--thank you all SO MUCH! Kaitlyn's responding to the antibiotics (though of course not thrilled to be woken up around midnight to take them--this every-eight-hours business is brutal!), and the best part is that FINALLY, after MONTHS of battling an insanely itchy, red, awful diaper rash, it is responding to the steroid cream the doctor prescribed! It still itches her, however, but it looks better than it's looked in several months. I can't believe it, like I can actually see SKIN there now and not just red.
I've been doing a TON of research online the last couple of days, looking at immune disorders, obscure syndromes, etc. and thinking about Kaitlyn's symptoms in hopes of compiling some questions for when we see the specialists next week. Every syndrome I've found just doesn't seem to fit Kaitlyn very well. Recurring staph infections are a common symptom for a lot of them, but they all pretty much include lots of symptoms that quite frankly she DOESN'T have...strange facial features, repeat pneumonia, lung problems, heart problems, low T-cell count. In fact, for pretty much all of them, the most common indicators are things she DOESN'T have.
What I DID find, however, was something called atopic dermatitis (most common type of eczema)...for which she literally has EVERY symptom. Including recurring bacterial infections that are happening right where the aggravated, itchy skin is. Our pediatrician told us that her diaper rash that she's had for months is not itself bacterial, that a bacterial infection will hurt but not itch. He also said that he believes the bacteria is reinfecting that area because it's always so raw and ripped up. He tried treating it with anti-fungal creams a few times, but it didn't respond to them AT ALL, so now he's prescribed a steroid cream and it's totally responding. (Turns out atopic dermatitis is often treated with steroids.) Kaitlyn also has scaly, rough patches on her arms and legs, and currently her cheeks, and she's had cradle cap for months also. Guess what, those are all symptoms of atopic dermatitis. I have a history of allergies (pollen, pet dander, eczema), and we have some allergies/asthma in our families--and guess what, those are all indicators of atopic dermatitis. My pediatrician also is thinking about a possible zinc deficiency--which, indeed, can bring on dermatitis. Kaitlyn has EXTREMELY sensitive skin, always has, very susceptible to breaking out in a rash from detergent, heat, certain fabrics...also an indicator.
SO, I am about 99.99% convinced that even if there is some random immune problem going on, she has nasty eczema. I'm not sure why she's lost weight, although zinc deficiency can cause this (you can have a deficiency in spite of a proper diet--it can happen during periods of rapid growth, therefore it can happen to infants because they grow so quickly.) It can also cause your immune system to be suppressed. The weight loss does coincide with when she started crawling/eating solids and I wonder if maybe I wasn't feeding her enough solids or something weird like that? Although she's fallen off her growth curve, she is currently right about where Anna was on the growth curve. At any rate the weight loss makes me feel very concerned (the pediatrician too.) Though goodness knows that she eats/nurses a lot and has energy to spare!
Anyway those are my findings. I kind of feel like a dork doing all this "investigating", but I'm thoroughly convinced that YOU are your child's best advocate and just because you didn't go to medical school doesn't mean you can't be informed and play a large role in your child's healthcare.
Oh, and I'm so grateful that Al Gore came up with the internet! What would we do without this amazing contribution of his??? (Hee, hee.....)