And then you have setbacks.

(Lost most of my pictures when I switched from WP to blogger. Slowly working on putting them back, but it's a massive undertaking so please forgive the broken image links!)

Fearful that this blog will become an eczema blog (sort of how it became a food blog...and before that, a sewing blog...and before that, you get the point...), I've started keeping another blog where I'll keep up with our journey to heal the kids' eczema there instead from here on out.  I don't want to inundate people who don't care about eczema with nothing but eczema tales.  :)

I can't even put into words how helpful it's been to have Sammy's Skin.  On days like the past few, when I'm feeling hopeless again with another setback, it calms my soul to go back into her archives and read her post when they were a few weeks into detergent removal and not seeing improvement.  In hindsight, it's easy to see that it just takes a long time to get all the detergent out of a home (I have been running laundry loads non-stop since last Saturday and have barely made a dent in all that needs to be super washed), and that setbacks are normal and expected, especially until the skin is totally healed.  But perhaps without that resource (a child whose eczema was completely resolved by removing detergent!), I would give up now.

I figured documenting our journey might have the potential to help one other mama, and obviously that's worth it.  So if you have any friends whose children have eczema (even if it isn't as severe as our kiddos), maybe you could recommend Sammy's Skin and solveeczema.org and our blog journey.

Things had gotten better here, and then they got worse.  Landon's skin is raw again, Adalyn's is scabbed up.  Both are infected.  Landon does this thing where all of a sudden, he'll just start clawing at his face, crying, and before you know it, it's ripped up and bleeding.  If you try to stop him, he gets so frustrated and mad.  Adalyn does it, too, but does at least seem to "get it" a little more, that the clawing leads to more pain.  But they both definitely have scabs all over their faces.  Adalyn's wrists are bad again, although nothing like they were right before starting the detergent removal.

The one thing I can say that is a huge positive is that I can actually see the source of these flare-ups sometimes.  I'll see Adalyn rub her face against the couch and then two minutes later, break out exactly where she was rubbing.  Though our couch has removable covers that I've superwashed, there's nothing I can do about the cushions, which I'm sure are full of detergent residue, short of going out and buying new leather furniture which obviously is not in the budget at the moment.  I'm hoping that once we have eliminated a lot of the sources, the smaller sources like furniture will be little enough exposure that they can handle it.

I found the solveeczema forums last week and between that, talking to AJ (who runs solveeczema) and finding other blogs with children similar to mine, I've pinpointed the things that have really seemed to help others.

-We ordered a small selection of organic clothing to see if it helps.

-We bought a water softener because as AJ noted, sometimes the combination of soap and detergent residue (which happens when you have hard water, as it's almost impossible to get all residue out) creates a hyper itching period, which we definitely have experiened.  After talking with her, I knew we had hard water (we have all the signs).  I've been so disappointed in our switch to soap products.  Everything has a film and nothing feels clean, including myself!  She thinks having a water softener is extremely important in this process, and CJ from Sammy's Skin noted that she hypothesizes that part of the reason it took them two months to see the eczema clear up is because they  have hard water and no softener, so it took a long time to get the residues out.  We haven't had ours installed yet, but I'm so excited to see how much better the soap works once that bad boy is installed (I hear soap is dreamy if you have soft water and you can use so much less all around).

-We ordered a good water filter.  I've been wanting the Berkey forever and a day, but could never quite justify it.  Now that I'm learning just how much the toxins in our environment might be impacting my family (more than I ever suspected), and have been learning about all the chemicals, medicines and other toxins in the water in the USA, I want to try to get as many toxins out of their environment as is humanly possible.  I ordered the countertop filter and the shower filter, as I've heard a lot of speculation that the chlorine levels really affect children with eczema.  Additionally, there is quite a bit of debate about the use of flouride added to our water here, and as someone with hypothyroidism, I do not want flouride in my water .  Not that flouride is bound to be the sole cause of my hypothyroidism, but I would sure love to get off the meds and perhaps there's a chance this will be a stepping stone.

I've become so frustrated and fed up in the last few weeks.  Our lives quite literally revolve around my children's skin.  As CJ said on her blog,

I always thought this would be the least of ailments that could strike my child. Eczema is "just dry skin" right?  Just slap some moisturizer on it and it will get better. Allergies? Just keep them from the thing they are allergic to, right? No big deal!! Ha. No, this truly sucks (please forgive me, that is actually the worst my language gets, you know I am losing it when I say or type the word "sucks") and the worst part is that nobody seems to have answers. Sam's doctor and allergist are clearly just as confused as I am. "There is no reason for eczema!"  Eczema just IS.  Apparently.  It has increased by crazy numbers over the past several decades, there must be a reason, why hasn't anyone been able to figure this out yet!"

Yes, that, exactly.  Eczema?  Doesn't sound so bad.  No big deal, it's just some dry skin.  Except it's not.  At all.  I haven't been to church in...four months?  Five?  I can't go because if Landon gets even a little tired, he handles it by clawing open his face. With the other children, even though church always fell right at naptime, we could push them through it.  With Landon, we can't.  We can't push him through any amount of tiredness, and certainly not expect the nursery workers to deal with this child screaming and clawing his face completely open and bloody.

I barely take my children out at all anymore.  We've become recluses.  We can rarely go anywhere without people commenting on their skin.  Adalyn is old enough. She gets it. She understands. My mom said the other day she looked in the mirror and goes, "Oh no, my face!"

It breaks a mama's heart.  Eczema feels so much worse than what I always thought eczema was.  Is it sad that this research study on the effects of eczema on mothers and families was relieving?  Sometimes I've thought I'm overreacting, or that I can't tell people how much it actually impacts our daily living because they'd be like, "Um, it's just eczema."  I haven't talked about all the tears I've shed over it or the amount of my days I spend thinking about their skin (it's probably 75% of the day, to be honest).  But something about someone saying, "Hey, we've studied this, it's a really big deal, it's really impactful on a family," makes it feel okay.  I shouldn't have to have my feelings validated, but sometimes I do.

Results

The children with eczema had a mean age of 2.8 years. Mothers of children aged 5 years or less with eczema exhibited significantly higher total stress scores (mean PSI 259.6, 95% CI 244.9 to 274.3) as compared to mothers of normal children (PSI 222.8, 95% CI 221.4 to 224.2) and children with other chronic disorders such as insulin‐dependent diabetes (PSI 218.1, 95% CI 204.7 to 231.6) and profound deafness (PSI 221.7, 95% CI 206.4 to 237.0). Stress scores in the parental domain (138.2, 95% CI 128.9 to 147.6) did not differ significantly from the scores of parents of children with severe disabilities such as those requiring home enteral feeding (135.2, 95% CI 129.3 to 141.1) and those with Rett syndrome (132.8, 95% CI 125.0 to 140.6).

Conclusions

Moderate to severe childhood eczema should be regarded as a significant illness in which maternal stress is equivalent to that associated with the care of children with severe developmental and physical problems."

------------------------------------------

Atopic eczema is a common childhood disorder with a prevalence of 10–16% in westernised countries.¹Caring for a child with moderate to severe eczema involves a rigorous skin treatment regime, adjustments to family lifestyle, and financial and social costs,^2,3,4,5,6 which all can place substantial demands on the caregivers. Mothers are usually the primary caregivers and carry the major burden in caring for a child with a chronic condition.⁷ Stress will arise if mothers perceive that they cannot adequately cope with these burdens.⁸

There is little literature documenting the stress experienced by mothers who care for a child with eczema. Most studies have examined the impact of atopic dermatitis on the child, family functioning and quality of life, with a few studies examining the parent–child relationship. Studies that have reported on the experiences of mothers indicate that they describe themselves as more depressive, hopeless and anxiously overprotective.⁹ They report feeling stressed about their parenting skills, being less efficient in disciplining their child, and less likely to feel socially supported.^10"

If you're a mama with a child who has eczema, you may find the whole study to be strangely relieving.

So that's that.  We're working really hard to do something about this once and for all.  But it's slow going.  And we're practically on quarantine.  If you know us in real life, know that we're not avoiding everyone on purpose.

For anyone else dealing with eczema, here's a great little starter questionnaire from AJ @ solveeczema that I pulled from an article I'd highly recommend you read.