In the past 6 weeks or so since I last posted about Sam's miracle healing, I've been riding the learning curve. After our initial success it was tempting to feel as though we'd 'made it' and that the hard part was over. I'd imagined that things would be so easy moving forward. I have since learned you never really 'make it' when it comes to this kind of eczema. In some ways, maintenance has been easier than the initial work required to get his skin clear, and I'm told it will definitely get easier in the future as Sam gets older and his skin becomes naturally less permeable. But I did make the mistake initially of slacking off once we got rid of the eczema, thinking that I could let vacuuming and house keeping slide just a little since he did not seem to be reacting as readily to detergents.
The problem with slacking off is that detergent levels rise very quickly when left unchecked. No matter how much I reduce the detergent levels in our home, the levels are always going to be so much higher everywhere else we go or visit. Whether it is the grocery store, a clothing or toy store, Grandma's house, the library, a friend's house, a homeschool science class at the nature center, or the park playground, all of us are coming home tracking in that detergent dust on our clothing, skin, and hair and then leaving trails behind on everything we touch at home. Technically, to keep on top of things I really need to continue vacuuming every other day (if not daily!) and regularly wiping down surfaces to get rid of those dusts we track in to prevent them from accumulating and becoming problematic for Sam. We should all be changing our clothing as soon as we come inside, putting on 'safe house clothes' and washing our hands and arms to minimize what is tracked in.
As you can see this is definitely a huge lifestyle change requiring a great deal of vigilance. I discovered that I was not staying on top of detergent levels well enough the hard way when, a few weeks ago, Sam's arms began to breakout more readily at home when he would push his sleeves up during the day. It got to the point where they would turn red even before they had significantly contacted any surface, just from being exposed to the air, which told me there was too much detergent dust present and flying around. The rest of his body remained (and still remains) entirely clear so this arm eczema is a minor issue comparatively, but still bothersome because I know I can do better.
Once I realized I was slacking and needed to drastically reduce our detergent levels again, I went on another crazed vacuuming and washing spree like I'd done the first time around, only this time including many areas I had actually neglected the first time. In June I focused mostly on exterior surfaces Sam could touch. This time I went further, including higher and interior surfaces as well. This extended to taking every item out of kitchen cupboards and washing down the insides and outsides with a soap/water spray (followed by a vinegar/baking soda spray to prevent scum) inside and outside of the fridge, sucking the dust off every individual knick-knack, vacuuming and washing windows, doors, door frames, baseboards, I even 'vacuumed' every inch of wall ceiling to floor with a flat attachment (certainly walls collect a layer of dust too?), removed hundreds of books from our bookshelf and vacuumed each one to suck off the dust, washed down all the bathrooms again... etc. Pretty much ANYTHING that might have detergent dust or residues that could be spread around I tried to wash or vacuum.
After all of this, his arms are significantly better. He is still getting eczema on them but that's okay. They really only bother me because the rest of him is very clear and eczema-free. Luckily the washing every night with soap and applying the ointment prevents it from ever getting out of control. So overall, I feel satisfied that we've retained our progress. I suspect that our carpet is such an overwhelming influence that no matter how much I clean everything else, we'll always have the issue of the carpet puffing up some amount of dust from under the pad and causing the eczema to exposed skin. SolveEczema.Org actually recommends removing carpets if possible for full implementation of the detergent-removal methods. If we had wood or linoleum floors instead of this awful old carpet I can't get rid of, I'm sure the cleaning I've done would be that much more effective and we could let him wear regular shorts and t-shirts and not have to worry so much.
Sam lives in the footed pants and opening-mitten shirts from this website and also some awesome outfits from here. These create a safe barrier between his skin and the carpet, allowing him to stay clear where he is clothed. You might wonder why I even bother cleaning anything else if I have to worry so much about our carpet, but I do think reducing our detergent levels as much as possible makes a huge difference. I've noticed when he is at someone else's house his clothing becomes more easily saturated with dusts. I know this because later he will have developed a light spotty eczema under his clothes that he doesn't get at home. He also tends to break out on his face, neck and gets puffy around the eyes which does not happen at home either. Pulling his pants down to change his diaper at any other house might mean itchy leg eczema from just that brief exposure, but he is not effected by numerous diaper changes on our carpet at home. The overall levels make such a difference. (See the Bucket Analogy for Allergy)
It has become very tricky to make extended visits with friends or family because of these type of exposures. I do not intend to be anti-social but I do find myself turning down more invitations that require Sam to be in another person's home for any significant amount of time. Hopefully as he gets older and is less prone to break outs I will not have to worry about this so much. It's just that when we make house calls and he comes home with eczema, it can take a few days for him to heal. Prescription medication isn't really any option anymore either. I am committed to never using steroids again if I can absolutely help it! I have learned that many steroid creams contain detergents as an inert ingredient and overall make the skin more permeable and susceptible to the irritant with every application. In the short term they might suppress symptoms but in the long run they can only make things worse.
I am hoping to avoid having to do any future massive cleaning overhauls like I did last week by getting into a regular schedule of vacuuming and wiping down surfaces. My goal is to vacuum every other day at least and also wipe down exterior surfaces with soap or a vinegar wash, switching between upstairs and downstairs surfaces every other day. I hope this will make this maintenance phase easier... of course that means I have to somehow muster the discipline to stick with it... hmmm.
Lest I give the impression that this transition to a detergent-free home and an eczema-free Sam has been all tedious work and worry, I want to copy an excerpt from a letter I sent recently to a friend, highlighting the most wonderful part of this whole journey. This letter contains some rather sensitive personal content, but I've decided to post it here largely unedited in hopes of presenting a more honest portrayal of our experience, and hopefully encouraging others who might feel similarly that better days are within reach :
Regarding Sam- yes I think you are right, and I hadn't really thought about it, but when you mentioned his skin looking even healthier than when on steroids (and that it looked kind of flat and pale before) I had to go back and look at photos and there is clearly a difference. That steroid skin that I always thought was so beautiful (because it was the only 'clear' I knew) was nothing, nothing compared to this truly healthy skin. I see children all over the internet everyday, some clear into their teens and STILL with terrible eczema, and I nearly want to cry at times thinking that we've managed to find ourselves numbered among the "lucky few" who have found a working solution, and so early on. My heart literally aches when I think of all those others.
I love seeing Sam this way, without eczema, with healthy skin. I feel like this is my REAL boy! I always was so determined to find a solution for him, but I really thought it would be tweaking his diet just right, I never ever in a million years would have suspected what it turned out to be.
It wasn't just Sam's skin that healed as a result of following [solveeczema.org]. I feel like our whole family life is healing now. I was so depressed for so long when I realized around Sam's first birthday that he'd been on steroids for 8 months and his skin was just getting worse and worse. I felt so helpless. I spent every ounce of energy looking into finding a solution for him. It was all I could think about -despite many other priorities that needed attending to- and I tried so many things. I blew our budget nearly every month on this diet and that, purchasing special allergy-free, gluten-free, dairy-free, etc health foods and just obsessed over my youngest son, even to the neglect of my two older children. I simply could not give them as much of myself, I was so drained, they were both acting out in ways that were out of character I think because they must have felt that I wasn't really 'present' with them. We were all miserable. Even my marriage was beginning to suffer because of the amount of time I was giving to this endeavor. Honestly I think my husband preferred me to keep applying the topical steroids to Sam if it meant we could pretend the eczema didn't exist.
I think back on that mess, it was such a dark, difficult time... while I am a person of deep faith, and I prayed so long and hard, I am not the type who is very good at "putting on a happy face" or maintaining my serenity in times of trial, I take things too personally... and I take too much responsibility on myself to ensure those around me are happy and well and taken care of, so I was simply not functioning.
For the past few weeks, our life has felt a lot more... "normal". Finding a solution to Sam's eczema freed up so much time for me, no longer having to search for answers. I'm doing more with my kids now... I am getting more rest, and I don't feel so helpless regarding Sam's skin. Last Saturday we spent the day together as a family, we all went to the pet store to see the animals, to north UGA campus to walk around (my husband works for University of GA) and then out to eat. I realized, it was the first time I was out enjoying my family where I wasn't completely preoccupied with Sam's skin. I looked around and saw everyone, including Sam, smiling and laughing, and realized that for that moment at least I was carefree. Though I was curious how his skin would react to the animals (he'd never been to a pet store before!) I didn't obsess, because I knew if he broke out a lot or even a little, we could take care of it quickly and effectively.
Now that Sam's skin is clear, we've been able to add every food back into his diet, except for tree nuts and peanuts. For the longest time, that kid did not have a bite of any fun foods such as cookie, or ice cream, or pizza (not that he needs any of those things!) but that also meant his siblings didn't get those things either. We had to be fair. And my daughter, who is 6, would often ask "Why does Sam have to have eczema? Is he always going to have it? Because its not fun! We never get to do anything fun or even get treats because of Sam." And now when we go to the grocery store, they get to eat kid cookies from the bakery, and that is the best thing in the world to them. Sam is still getting used to this business of getting treats. You should see his face when I hand him a cookie! His mouth and eyes gape open in amazement and his little face nearly shakes with excitement! It is one of my favorite things. What a terrific discovery to find out he was not allergic to all the foods we thought he was after all.
One starfish on the sand... no... an entire family! ... Every person in my family has been blessed.It's true- despite the hard work involved and the hyper-paranoia over long visits away from home, I feel incredibly blessed to have been literally handed the knowledge to know how to heal my son's skin, how to predict and prevent break-outs, and remedy them when they occur. I wish this kind of power and change in perspective for every parent who has a child with eczema. I know how very helpless it feels to be on the other side of this. If you are needing help and not sure where to start with using Solve Eczema .Org, please visit a brand new Solve Eczema User's Forum at http://solveeczemaforum.proboards.com/. I am sincerely hoping that within 6 months time we can see the category for Success Stories completely full of testimonials and photos of babies and children with healthy, eczema free skin.