AT LAST!!!!

June 5, 2011

I feel almost guilty taking so long to post this, but Anne is well!!!! She is doing great, and all thanks to such simple solutions given to us by a new Dr. I found. He is an allergist who has worked a lot more w/ pediatrics, saw Anne, and kept talking about, “as soon as we get her skin cleared up,” through the whole visit. We first ran another allergy skinprick test---eggs and milk came back positive this time, he then gave me the runthrough of how to get her better, AND told me exactly what to expect if she did have any food allergies or intolerances!! Since there are a lot of false positives w/ these tests, ESP. w/ eczema children, he said to just keep her off the milk and eggs for the week until her skin was cleared up (as my head is ringing w: IN A WEEK, HER SKIN CAN BE CLEAR???!!!!), and then reintroduce them one at a time, looking for a fairly quick reaction, as after monitoring such tests hundreds of times in hospitals, etc., he said w/ confidence that it is VERY clear if they're reacting, and then we could know for sure if the milk and eggs were a problem. 
He explained that w/ eczema, children sometimes have just overly active and sensitive skin, but as their skin is scratched open, a bacteria (harmless to most of us, but one they're more sensitive to) gets into their skin and causes things to cycle out of control.  We can't re-regulate her body, but we can keep the bacteria under control (w/ the bleach), and keep her skin moisture barrier stronger by intense moisture/lubrication--- 

So, the routine is this:

-Bath w/ 1/4-1/2 c. bleach—at least 20 minutes

-then pat dry and apply ointment: triamcimilone 1.0% on all trouble areas; vanicream/aquaphor w/ hydrocortizone 2.5% everywhere else, and afterwards, for maintenance; a separate small steroid for face (fluticasone), as needed (this is all the cheap stuff-- $10 for a tub, not $170, which was our largest investment!)

-put her in wet cotton pj's—including socks on hands, then dry pj's over those to keep her warm enough—at least 1 hour, or let her sleep in them

That's it!! $1.50 for a bottle of bleach, and $10 for each of the creams—and that's her treatment!!!

It's no cure—he, and we, are all hopeful that she will still outgrow this (though he said it usually occurs about this age, so we'll see), she still has small flare-ups here and there, like when she's sick or stressed, but her flare-ups now don't even touch what her “good” days used to be, so we can live w/ it!! We started off at twice a day (for a week),--with the first 2 days being TORTURE (she HATED having water on those open wounds, and I had to hold her in the water for the full 20 minutes)- but just like the Dr. said, she was totally clear in that amount of time—we are now at once a day, and can move to 3X/week or as needed, as she improves (IF she improves). He emphatically agreed that the oral steroids were no solution, since they only work while you're on them. He was so calm and familiar w/ everything, I only wondered where he'd been the last 2 years!! She started sleeping through the night after the 2nd day (hooray!!), AND once her skin was clear after that first week, we gave her ice cream (NO reaction), and then the next day, eggs (NO reaction!!), so we now have her not only feeling better, but eating EVERYthing (mostly cheese by the fistful).  Can you imagine the increase of time in my life now???? Does it feel a bit like Naaman washing 7 times in the River Jordan??--yes, in a lot of ways, and EVERY bit as miraculous. Anne is SO independent and playful and cheery (and in need of discipline!) now, that we feel like we have our daughter back! We are SOOOO grateful for this miracle, and for the COUNTLESS helping hands, prayers, ideas, creams, and supports we've had from SO many loved ones over the last year or so. So many times, I felt like angels were leading me along when it all seemed too hard to carry—and angels in the form of a phone call at just the right moment, a lap to hold her, or just an expression of sympathy when I felt so hopeless. Prayers are surely answered—and even when the answer is not always what or when I wanted, I am constantly assured that I am NOT alone.  MIRACLES HAVE NOT CEASED!!