The scariest week as a mom to-date.

5.19.2013

(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!)

My husband left for a work trip at the beginning of last week. Comically, things inevitably fall apart when he leaves town, so I was mostly braced for the thrashings. And there were some, of course. Landon has been a clingy, needy baby like I haven't seen since the colic days of Adalyn, so that made for a fun week. I was right in the middle of cleaning our house of detergent, so there was tons of superwashing to be done and floors to be scrubbed with soap, etc.

We made some massive strides in improving Adalyn's eczema this week. I turned the air up and clothed them, mostly from head-to-toe, in eczema gear. Pants with attached "feet," onesies with built-in mittens, and Scratch Me Not mitten sleeves (which are a Godsend, as it turns out). We bathed multiple times a day, lathering them in aquaphor after baths and once again, covering them from head-to-toe. We bandaged up the open wounds and kissed lots of "ouchies."

On Wednesday, I began to notice that Landon's face was getting pretty intense looking. His face is usually scratched and scabbed up, but this was different.

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I sent a picture to my friend, who said it could be impetigo, then my mom said the same, so I googled it and figured this must be what it was. So I called the doctor and asked for a prescription for antibiotics. We really dislike antibiotics because they totally wreck our kids' guts, but there is a definite time and place for them, and skin infection of this severity needs to be addressed.

I loaded the kids up and took them to Target to have the prescription filled Thursday morning. It was by far the worst trip I've had with the kids in regards to their eczema. As you can imagine, people reacted quite strongly to Landon's face. Most looked horrified. There were quite a few double-takes and the cashier literally just stared at him while checking us out. I could not get out of that place fast enough. My cheeks were flushed the whole time and I just wanted to shield my babies from the gawking. I wanted to hide them under a blanket.

I started the antibiotics and we went on our merry way, assuming everything would get patched up quickly.

I went back to the house scrubbing and the intense reading/researching and started jotting down new ideas to try. Having an infection that required antibiotics really drove home the point that we have got to get to the bottom of their eczema. We can't continue on like this. They are always at heightened risk of infection because their skin is cracked, raw and open 100% of the time.

All three of us were sick during the week, but again, it was more humorous than anything because as we've gotten so accustomed to, stuff just happens when Tim's away.  I think I might have gotten three hours of sleep on one singular night last week. The rest of the week it was a broken 15 minutes here, 20 minutes there, shuffling between Landon and Adalyn's room as they cried out. I love my children, but I would really love it if they learned to sleep. Landon will be one in a few weeks and he wakes up every 1.5 hours consistently. It's insane. Although can you blame them? They are up clawing at their own flesh all night long, fighting that intense urge to scratch that is so common in eczema sufferers.

Friday night, as I was letting go of some tension and anxiety knowing that Tim would be home the following day, I ended up staying up way too late, reading site after site about eczema. I'm amazed by how many different potential "cures" there are, and sometimes I can get sucked in for hours making mental notes of what to keep trying.

And then I happened upon a picture of eczema herpeticum. In all my years of research, I can honestly say I've never stumbled across this term. But the moment I saw the picture of the "punched-out" blisters, my heart sank. I knew, without a shadow of a doubt, that this was what Landon actually had. And then I nearly had a heart attack when I read the next few lines, which went a little something like this:

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So I googled some more. Article after article said the same: "dermatologic emergency," "fatal," "can be life-threatening," "severe skin infection that requires immediate medical attention," "The number of days between onset and diagnosis drastically affects the number of days in the hospital," "often misdiagnosed as impetigo," "requires antiviral medicine," "very rare," etc., etc., etc. What drove it all home was that it is caused by the herpes simplex virus infecting open eczema lesions. I'd had a cold sore the week before.

I felt the blood drain from my face. had misdiagnosed Landon and just assumed he was totally fine now that he was on antibiotics, was the one with the cold sore who kissed him and infected his eczema with my virus. It was 3:00 a.m. and I frantically emailed my doctor and called my husband, who was still out of town. Should I take him to the ER now? Wait til morning? What if he died between now and morning? Is that even a possibility?

The questions came and came...and came. We decided together to wait until morning. I could get a few hours of sleep, Landon seemed to be in decent spirits so probably wasn't knocking on death's door and I wouldn't have to wake the kids up. In the morning, Landon's face had gotten a little better but Adalyn had a blazing fever and was so pathetically sick. Of course. So I lugged the kiddos to Children's Mercy, where the doctor took one look and said, "Oh, that's eczema herpeticum. Has anyone in your house had a cold sore recently?" Punch. In. The. Gut.

She told us they may very well have to hospitalize him, and once again, my heart sank. She said she'd consult with the dermatologist and since he seemed to be in good spirits, she'd push to allow him to come home with us and do the medicine and skin treatment regimen at home. Ten nail-biting moments later, she came back and said I could take him home as long as I promised to come back if the sores spread, particularly anywhere near his eyes. I did, of course, and they sent us on our way with lots of instruction and four prescriptions.

And now, here we are, Sunday evening, with three very sick kiddos who need lots of cuddling and kisses. But a grateful heart, because it could have been so much worse. And I know that. The what-ifs are killing me. Why had I just happened upon this obscure mention of eczema herpeticum when I wasn't even looking up anything to do with skin infection? What would have happened if I hadn't? If I'd gone on assuming it was impetigo? It's too much for this mama's heart.

I believe I learned something I needed to learn this week. I've been so, well, whatever about skin infection. I've read time and time again how prone to serious skin infection kids with severe eczema are, but I guess after all this time and never having contracted one, I had become dangerously indifferent to the whole idea.

Now, my sweet little boy has a high likelihood of battling this skin infection for life. They said just like cold sores, once you have it once, you have it forever. The virus will stay dormant in his body, and every open sore is at an extreme risk of becoming eczema herpeticum. Every illness he has will put him at high risk of an outbreak. It's a lot to take, because my heart aches for my baby. But in the end, this will be a blessing in disguise, because to learn first hand that my baby could actually die because of his eczema is all I need to know to stop at nothing to solve this.

I've hit a fork in the road: go left, cross our fingers and hope they grow out of it, or go right, fight like mad and do whatever it takes to fix this for good.

What a friggin' week.

Because I should end on a positive note (and this is VERY positive), Adalyn's face now has NO eczema on it! Praise the Lord! NONE (this picture is two days old so there was still a tiny bit of eczema left). Her wrists and ankles have improved leaps and bounds this week. I am so very, very thankful!

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And then you have setbacks.

5.06.2013

(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."

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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.

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