Last night my husband and I spent several hours pouring over articles from medical journals to try to get a better idea of what eczema (or as it's also called Atopic Dermatitis, or AD) is exactly. We've been told a lot of things from different doctors - not necessarily conflicting information, just different things from different people. But we found an article last night that laid it all out and really explained the different facets of AD in a way that we could understand. I was hooked just from reading this sentence in the abstract: "Although the pathogenesis of the disorder is not completely understood, it appears to result from the complex interplay between defects in skin barrier function, environmental and infectious agents, and immune abnormalities."
There is definitely a complex interplay, I knew that without a doubt. I just didn't know exactly WHAT it was an interplay of. We've had one doctor briefly mention something about a skin barrier deficiency, but they never really explained what that meant or what we could do about that. Now we're doing our own research and plan to talk to the Immunologist about it in May. We've also had doctors tell us that it's absolutely not an immune issue. However, I truly believe it is, and according to this article, I may certainly be right. This is another thing we plan to bring up with the Immunologist. The environmental and infectious agents are the ONLY things that any dr. has ever really addressed to us as a cause for her eczema. Though, it's clearly more than that.
The article also laid out a great step by step algorithm for managing the disease. Our number one goal is to figure out what her triggers are, so that we can control as many of those as possible. But, in the meantime, we have to learn how to better manage her skin day to day to help keep flares at a minimum.
Step #1 is education: understand the chronic nature of the disease, importance of treatment adherence, and appropriate use and application of topical therapies.
It really wasn't until this past year that we started understanding these things. So we're on our way!
Step #2 is skin care: regular bathing, regular, liberal use of emollients/moisturizers.
We are on top of this right now with Rapunzel. But it's definitely not easy. We've been guilty of letting her "just go to bed" without a soak or skipping a morning soak because we're running late a few times, and it's just not worth it. Again, this goes back to Step #1 - education. We are just starting to really understand this disease, and understand how vital it is to keep on top of it. I am not exaggerating when I say that missing one bath could be all it takes for her skin to go from ok to infected. Adherence to treatment is THAT important.
Step #3 is topical corticosteroids. This one has been contreversial for us, because for years all we were given was Step #2, immediately followed by Step #3. Well, as you can see from my example in Step #2, even it fails without a good Step #1. So you can imagine, Step #3 not going well either. We spent years going back and forth between this steroid cream and that. Getting stronger, then pulling back. All with the same result: they *might* clear her skin, but as soon as she came off of them (whether it was cold turkey of weaning), she relapsed hardcore. It was a never ending cycle. And we were starting to see the effects of steroid-use in other areas as well - Rapunzel's anxiety shot through the roof. We recently decided that we were done with topical corticosteroids, as they seemed like a bandaid that wasn't even working. After reading this article though, we realized that when Steps #1 and #2 are followed, Step #3 can actually be a pretty effective way to handle a flare.
Step #4 is topical calcineurin inhibitors (also called topical immunomodulators). This is Protopic, which we do have for Rapunzel. These work by suppressing the immune response of the skin, but contain no steroid. These are good for when corticosteroids are not clearing a flare, because they are safe to use daily for longer periods with less side effects. This is another thing that was never fully explained to us.
Step #5 is systematic corticosteroids. This is the oral prednisolone that Rapunzel has had to take a few times. It is really saved for when a flare has gotten so severe that infection is pending (or has begun) and needs to be reeled in quickly. The side-effects of this are ugly, and it's not something that should be used too much or too often.
Then along with all the Steps are courses of action to take for bacterial infections, viral infections, and sleep disturbances. Diluted bleach baths should be used to prevent staph infections (which are super common since staph is colonized in about 90% of AD patients), and antibiotics are needed when a secondary bacterial infection is present. First generation antihistamines are recommended to help with sleep, since most AD patients tend to get itchier at night, and thus stay awake scratching.
Reading this article really helped us to see the breakdown of caring for Rapunzel's skin.
The article can be found at : http://www.aacijournal.com/content/7/S1/S4