Friday, December 7, 2012

Still Doing Great

I have to admit that I never was able to stick to the rigorous cleaning routine that I outlined for myself and committed to in the previous post. I tried for a couple of weeks, but eventually gave up for two reasons: 

1) I realized that being so vigilant wasn't a very realistic goal for my already quite busy life that includes three children and the many daily obligations that come with raising them, including homeschooling in my case.  I was having to give up things that I consider precious priorities to make the crazy cleaning happen (like quality time with my children in the evening) and I wasn't happy with the trade-off.

2) When I was running myself ragged hyper-cleaning, it just wasn't making enough of a difference in Sam's areas of exposed skin to make the time and effort worth it.  Vacuuming every other day and having the kids change clothing every time we come in from an outing just wasn't yielding dramatic enough results to justify the trouble. (Did I just say the same thing twice? Yes I think I did.)  

What I have settled on is to vacuum once or twice a week, and wipe down surfaces every other week. I no longer have everyone change clothing when we come and go. Depending on where we've been and how blotchy red Sam's hands and face look  after an outing, I sometimes will change only his clothing.  If I don't change his clothing then at the very least I always wash his face and hands with soap. 

Over the past 6 months that we've been detergent free and using all traditional pure soap products, our results have been pretty consistent. Sam's new normal is largely eczema free skin the majority  time. This picture was taken a couple of weeks ago before a nap:



I disrobed him briefly for the above photo. But his skin actually only stays clear like that because in addition to eliminating all detergents in our home, we keep him covered 24 hours a day in all cotton clothing from neck to wrist to foot. This would not be necessary if we had alternative flooring, but despite all of the other changes the carpet remains too large of an influence to overcome with any amount of cleaning. The detergents of 10 years are just too embedded. They constantly irritate.

Sam's clothing:







Clothing pictured comes from Cotton Comfort eczema clothing in Europe (very quality but very expensive) and the footed pants and opening mitten shirts in solid colors are the  Kumfy Cotton brand which I think might be made in Canada but they do ship out of the US via The Eczema Company (linked above.)  We love the Kumfy Cotton brand and have about 8 each of tops and bottoms that Sam lives in. 

You definitely don't have to have specialty clothing in all cases, I know that not everyone can afford them (we couldn't on our own but were blessed to have generous family willing to chip in)!  I know some children who are able to get by with just long cotton pajamas with socks on the feet and hands. I tried that route for awhile but it did not work for us because Sam would immediately pull the socks off hands and feet, leaving them exposed. He would then push up his sleeves and pant legs, exposing them to the carpet and we would have eczema everywhere!  We needed clothing that was secure at all the joints.

What I really like about the specially made clothing and what makes them worth the expense in my mind is the double thickness in the hands and feet where it is needed, the absence of irritating seams or tags, and the fact that Sam cannot undo the mittens on his own at night to scratch. I also prefer the footed pants because while he will take socks off if he is wearing them, he can't remove the footed part from the pant!

Just one more thing regarding clothing. Sam only wears mittens at night. During the day, he needs his hands for development. For a while he was pushing his sleeves up and having his arms exposed to the carpet and having eczema on his arms every day. We solved that problem by placing velcro straps or clear tape around his sleeves at the wrist so he would not be able to push them up, but can still use his hands:




You may have noticed I said that Sam is majority eczema free most of the time. Since we can't keep his hands or faced completely protected, we do see daily dustings of eczema in those places.  His face is the easier of the two to manage. He is at the age where he doesn't lay on others so much or roll around on the floor. He walks upright and plays upright and only contacts the carpet if he is being wrestled by a sibling. Still, if he rubs or touches his face too much with hands or mittens that are contacting the carpet more frequently, we get some blotchy redness. I am able to manage this by washing Sam's face with soap twice a day. We do this in the early afternoon just before his nap and again at night before bed.  (Basically any time they are going to be down and out is a good time to wash and barrier so that sleeping time can double as healing time.) 

I want to clarify here that carpet is not the only thing that causes Sam's eczema. It's just the only remaining and most prominent influence in our home. That's why I'm always bringing it up and griping about it. (Sorry!) But when we go out there are countless sources that can cause outbreaks. An interesting example is when I took the kids shopping at Kroger the day before Thanksgiving.  Sam always gets a little red when we go to any store because the detergent levels are so high. But on this day, I was shocked by how blotchy and red his face got as I pushed him through the store in the cart, and how quickly too! I realized that on this day there were so many people doing last minute Thanksgiving grocery shopping, so many bodies bustling around and pushing past each other through small spaces, that the detergents and dusts coming off all those bodies from clothing, hair and skin just created one big invisible detergent dust flurry in the air all around us. That is how sensitive Sam is, and how sensitive a lot of these kids are.  

Sam's hands suffer the most from daily exposure. More often than not, Sam's face is clear even without midday washing.  In contrast, his hands are nearly always a shade of red. See the very distinct line where his sleeves begin? And yet this is still better than what they were before we found solveeczema.org! They are basically very red and dry, but they don't seem to be very itchy (at least I don't see him scratching very often) and as long as I am washing them several times a day this little bit of remaining eczema never gets out of control.  I am so happy that we can manage this without drugs.  And  I am currently experimenting with washing frequency to see if that will make a difference in these hands.




10 comments:

  1. Carrie,
    Thank you for the update. Your routines and diligence are paying off. Sam's skin looks fantastic! Well done! He is so blessed to have such a dedicated momma! Hang in there!
    Sending big hugs and much love,
    Marie ;-)

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  2. Carrie -

    I'm thrilled you love the Kumfy Cotton clothing for The Eczema Company! We do too - my son wore them often when he was flared up.

    Sammy is adorable - wonderful that he's doing so much better! For his hands, I'd recommend the Nablus Soap we sell. My son was still battling chronic hand eczema, but we switched to this soap and it helped dramatically. I guess it helps that it only contains three ingredients.

    Congrats on getting to the bottom of Sammy's eczema!
    Jennifer
    Owner/Founder, The Eczema Company

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  3. oh my goodness! this is exactly what cooper's hands and face look like. I'm getting closer to answers :-)

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  4. I desperately want some of this clothing but NONE of it is available in the sizes I need on either site. Bummer! Have you ever seen any of it anywhere else? Gotta get my hands on it! :)

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    1. I wish I knew where to point you! I haven't seen it anywhere else and it is SO hard to find these types of clothes in the US. (You have to be careful to because some brands like DermaSilk and others have antimicrobial shields sprayed on them which contain detergents and all kinds of nasty chemicals.) As big a problem as eczema is, I don't know why we don't see more manufacturers of this type of clothing here. When the Eczema Company does get the footed pants and mitten tops in stock, they go so quickly. If you like them on FB you can keep up with when they get more in stock. I looked at the clothing and it looks like they have almost all sizes of footed pants in Sand color right now if you want to grab those- only that color though.

      I ordered only once and the clothing lasted about 5 months and after that everything was worn out and through. Budget could not handle reordering so now I make do with what I can get my hands on. Recently purchased all soft cotton pants from Wal-Mart in various colors and soft cotton shirts. During the day I literally put a band of wide, clear tape around Sam's ankles and wrists (on top of the fabric of his clothing) so he cannot remove his socks or push up his sleeves. At night, you can create mittens the same way by putting clean cotton socks over the hands and taping at the wrists again. It's really hard for them to find the end of the tape to pull it off, especially if the tape is wide. This might help until you can track down some clothing.

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  5. Carrie,

    I found your site after looking at the Itchy Little World Blog and also the Solve Eczema website. Your story hits home for me and I thank you for posting your trials to cure your sons eczema on the web. I am more hopeful after reading your blog that I can get to the bottom of my daughters eczema.

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    1. Oh, thank you! I'm so happy that our story can encourage others and offer even a slight glimmer of hope. This disease is so horrible. I haven't updated in awhile, but we've had some regression in Sam's skin because of seasonal food allergies and infections. I am confident that soon as we are able to clear this most recent infection, we will be able to use the Solve Eczema methods to clear Sam's skin once more.

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  6. Wow, you're doing amazing things for your son!! I'm so proud of you for digging deeper than what doctors say.

    I am intrigued by the concept of a skin barrier and soap baths since we are struggling with vestiges of eczema, too - what soap do you use for bath time? What laundry detergent do you use?

    Blessings!
    Megan

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    1. My favorite soap for bath time has been Sappo Hill natural unscented soap. Coconut oil based and olive oil based soaps are usually great choices. I use Cal Ben Seafoam for laundry.

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