Wednesday, June 12, 2013

A day in the life...

The next time you tell a mama who has a child or children with severe eczema "it's just eczema," remember this post.

Today, I was awoken at 6:15 or 6:30 to my scratchy baby. This was later than normal, so I was pleasantly surprised. Exhausted from being up 7 times with him (and his scratching) overnight, I rolled out of bed groggily and bee-lined to the coffee pot. For a cup of decaf, because I apparently love to torture myself and have decided to give up caffeine.

I spent the next ten or fifteen minutes changing his diaper and outfit, which is no easy task when you have a scratchy baby. One minute with exposed skin is an opportunity he will eagerly take to claw at as many patches of skin as possible. After wrangling through the diaper and outfit change and dabbing at the blood he inevitably drew in that minute, I put his "scratch sleeves" on. Or in other words, I tortured my child by removing his ability to feel with his hands. It kills my soul a little every day, but given that the alternative is ripped open skin and a case of "potentially fatal" skin infection, I will take torture. My heart is not settled or at ease about it, though.

Then it was breakfast for my littlest and my older son (who has, praise Jesus, grown out of his eczema) while my daughter slept in. I have grown to despise meal times, as they are always followed with intense face scratching, blood and sometimes swelling. I spent a good part of breakfast batting at Landon's arms, trying desperately to keep him from actually breaking his skin in this particularly bad fit of scratching.

Adalyn woke up on the wrong side of bed just as we finished breakfast. She usually wakes up pretty poorly, so this isn't anything new, but she refused to have her diaper changed. And when I say refuse, I mean this girl will fight to the death. Her screams got louder and louder, and as eczema is often triggered by stress, we hate these fits because we know that it just means more and more scratching. Within a few minutes, she was violently tearing at her neck and I put her scratch sleeves on. Passers-by must have thought I was killing someone the way she screamed. She began to choke and cough, and I knew within a minute she would be vomiting if I didn't find a way to calm her down. So I held her down. I squeezed her tightly, stroking her hair and holding her arms down as she screamed bloody murder. She kicked and clawed at me, her little heart racing so fast. Just as it always does, my heart broke a little as I restrained my two-year-old daughter while she literally went nuts.

Once I got her calmed down enough to convince her to let me change her diaper, I looked over her body, making sure none of the patches of weeping, crusty, scabbed skin looked like they could be turning into eczema herpeticum. The spots behind her legs, rubbed completely raw on Saturday evening in the worst eczema fit we've had so far (that quite literally soaked her sleeper in blood) hurt me to even look at. She's been hobbling around, having difficulties walking, ever since.

I'd say about 30 minutes after waking, we're finally able to sit her down to breakfast, which is a battle in and of itself because I have her scratch sleeves on. I try to feed her, because feeding yourself when you're wearing these things is no easy feat, but you would have thought I'd asked her if I could chop her pinky toes off. There was no way I was going to feed her breakfast. So I let her feed herself. That meant half of her steel cut oats were on the floor, but you win some, you lose some. About halfway through breakfast she broke down into another fit, though I can't remember now for the life of me what it was about. I tried to stroke her hair and calm her down, but she was having none of it.

She flung herself on the floor, kicking and screaming, and soon thereafter, the scratching began. All over, scratch-scratch-scratch-scratch. Then, because she couldn't really scratch with those sleeves on, she begged me to scratch her wrists and ankles for her.

"Please mommy! Mommy scratch please! Pleeeeeeeaaaaase - sob - mom - sob -mmmmmeeeeeee - sob - scratch my - sob - arm!" She kept jabbing her wrists into my face, desperate for relief. And I had to tell her no. Over and over and over, as she screamed at my feet.

Meanwhile I hear Landon's cry. The one that says, "I'm scratching my face open!" There's a very distinct cry he lets out when he's clawing at himself. So I go running for him, to flip his sleeves over so he can't break skin open, as I'd flipped the sleeves open while he ate breakfast.

Adalyn continues on her tirade for 20 or 30 minutes and I run back and forth between them, batting their hands away from their skin, trying everything I know to keep them from scratching; to distract them from the intense itch. It all fails, and I feel defeated, just as I do pretty much every other minute of the day.

I get a good 35-40 minutes or so in with no one crying, no one scratching to the point of doing any damage. I got some chores done and then put Landon down for his nap.

I turned on the TV for Adalyn because I've now become that mom. I desperately need a respite during the day. When I say need, I truly mean need. Some days I really do worry for my own sanity. She sat pretty contentedly in front of the TV for about an hour while I cleaned up the kitchen from breakfast, started some laundry and finished up an order for the shop.

About that time, she began the scratching again, and the begging me to scratch for her. I sat with her as we finished up a show and just about that time, Landon woke up. We did the normal diaper change thing and I began to get lunch ready.

Adalyn wanted lunch rightnow and told me in screams and Landon cried at my feet to be picked up the entire time. I slipped him little pieces of turkey as I cut them, if only to give myself little thirty second breaks while he chewed. I thought I was being so safe with our lunch of turkey and avocado, because those are both things they've had before without breaking out, but OH MY GOSH was I wrong! Lunch ended rather abruptly with Adalyn's left ear swelling, a splotchy rash spreading across her face and a terrible scratching fit, while Landon managed to rip open more skin on his face while I was dealing with Adalyn. Both kids ended lunch screaming and scratching, and I began to cry. I took some pictures of Adalyn because I'm trying to keep a journal of all their food and how they react to it.

My oldest got home from Vacation Bible School right about this time, and I snapped at him and told him they were all taking a nap. I feel so horrible for him. His behavior has gotten pretty bad lately, and I can't say I blame him. He bears the brunt of my frustrations with my life right now. He gets home just in time to find his mommy run absolutely ragged from an emotionally draining morning and practically the first thing I tell him is, "You're going to take a nap right now!"

I just needed it. Once again, I'd hit my brick wall and I needed a break. Day in, day out, 24/7, it just wears on a person. I need continual breaks or I really think I'll lose it.

I got the three of them down for a nap, although it was a difficult and long process, and I sat down to get work done. Some days, like today, I wonder why I keep doing this. Why do I keep making myself work? I don't have to have this etsy shop. I could quit at any time. We don't truly need the money. I never, ever have down time anymore, because I spend every moment of down time doing housework or working on orders. But I think the truth is that I'm scared to not have something besides motherhood. I need to use my brain and be something other than a mom. It's just another one of those things holding me together right now, even though it is also simultaneously exhausting.

Nap time ended smack dab in the middle of an order (though my oldest didn't nap, he at least read in his room mostly quietly), with nary a free moment of me time, and I was so relieved to see my daughter wake up happy. This doesn't happen very often anymore, so I embrace the heck out of these moments! We had some fun play time!

Then I got walloped with some fatigue and just laid on the couch for a solid 45 minutes or so. I find this happens more and more lately. The sleep deprivation from being up so often at night, going to bed late because I'm working on orders and being awoken between 5:45 and 6:15 most mornings has really gotten to me. My hubby thankfully picked up my slack and ran to the grocery store to pick up a few things we needed and picked up dinner. I try really hard not to eat out often, because healthy food is important to us and because the medical bills have really been piling up, but sometimes you have to do what you have to do.

This afternoon was a smattering of good mixed with bed. Lots of scratching, a lot more bleeding in the last few days in general, but they played together well. Dinner was the easiest meal of the day, with no one reacting too horribly. Ironic, no, that it's the unhealthy meal of the day that no one reacts to?

My FIL was here this evening and he and my husband took the kids out for a bike ride. Landon was pretty aggressively scratching himself the whole time my FIL was holding him before the bike ride, and I felt like I couldn't even pay attention to what everyone was talking about because I had to keep pushing his hands away from his arms (that and his face are the two areas he "attacks" most), as they were also starting to bleed.

After the bike ride, we all hung out for a little bit and excitedly cheered Landon on as he has really started walking this evening. At 12 months and a few days, he is our latest walker by far! It's a fun milestone!

Bedtime followed shortly thereafter and was as disastrous as normal. Landon took about 35 or 40 minutes to settle down.  I thought I'd gotten him down once, but I left the room and he began to cry again. When I went back in the room, he was scratching his face against the pack-n-play netting. This is one of the most frustrating aspects of his scratching! He can do so much damage with that netting. It's high time we bring the crib up instead. He just prefers the PNP so much that we haven't switched up to this point.

I finally got him down and then it was time for the big kids. Bedtime must be a well thought out and executed plan, or my high needs daughter cannot cope. At one, she was roughly diagnosed as having a sensory processing disorder (roughly as in a friend who is an OT gave us a test to fill out and she scored highly). Many days I still do think she has one, and wonder if we did her a disservice in assuming if she did have it, she'd grow out of it. Today was one of those days. We covered one hand and left one exposed (to suck her thumb; if we try to take both hands from her at night, her world would literally implode).

She freaked. Screaming and sobbing. Those screams and sobs were followed by my older son's screams and sobs, because like I said earlier, this poor kiddo has really taken a back seat to the other two children these days. And we've had quite a few traumatic bedtimes lately, where Adalyn ends up soaked in blood and it is a long ordeal to get her cleaned up and patched up. I can't imagine what that all must look like to a four year old.

The screams and sobs went on for awhile before I finally had to go in there and lay down with her, scratch her wrists and rub her belly until she fell asleep.

And then Landon woke up.

And I'm 100% certain I will be up another 6 times with him tonight, minimum.

I'm tired. In my bones; a deep, deep tired. The just eczema has ripped our world apart.

Wednesday, May 29, 2013

Turning a corner

Since posting last week about my son getting eczema herpeticum, things got even worse when my daughter came down with the same thing. I felt nothing short of desperate. To know both of my children now may battle with this scary infection for life kills my mama heart.

My daughter's personality has changed so drastically in the last week. She has these fits of, well, I don't even know how to describe it. Rage? Frustration? I'm not even sure. I wish I could know what's going on inside her little head. What she's feeling. She'll just start going crazy, screaming, repeating things over and over, kicking, sometimes biting, hitting, slapping. You can't talk sense into her. We have to physically restrain her sometimes. It's terrible. Terrible. I find myself just desperately begging God to relieve my children of this. Relieve my daughter of whatever is causing her such distress.

I'm pretty confident it's the medicine she's on. She is on both an antiviral and an antibiotic, and one of the side effects of the antiviral is aggressive behavior. It just breaks my heart, because I want my normal daughter back. We only have a few more days of medicine to take for the eczema herpeticum, so I am praying things return to normal at that point.

However, bad news aside, now that their EH has healed up, I have some absolutely amazing photos to share!

The picture on the left was Landon at his all-time worst a few weeks ago. The one on the right was him as of this morning.

The picture of Adalyn on the left was after her eczema had started healing a little bit, so not her worst, but as you can see on the right, which was taken a few days ago, she has healed SO much more. Unfortunately her body is still covered in eczema, though it is slowly getting better. Her face, though, is just incredible. If I had to pick body OR face, I would pick body every day of the week because at least it's a little hideable. I haven't been able to take them in public for ages because people always comment on them.

"What's wrong with your face?!"
"What did you eat?"
"Ew, look at your face! It's bleeding! Gross!" <--a young child who really doesn't know better

You get the point. We've become hermit crabs. So now, to see things improving, to know we're so close to being able to go out in public? HUGE.

We did take them out on Monday, and while I wish I could say it was a success, it wasn't. It was a success in that not one single person commented on their skin, but a failure in that they both had flare-ups and emotional breakdowns once we got home. My husband and I were practically in tears because of how much they broke down. We bathed them as soon as we got home, but in my mind, this was such a tell-tale sign that detergent plays a huge role in their eczema.

Friday, May 24, 2013

The scariest week as a mom to-date

I'm just copying and pasting this from my personal blog, so if you follow both, you've read this already. :)
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.


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:

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!

Tuesday, May 14, 2013

Today, I can't stop the tears.

Today is one of those days that makes me want to run away and hide. I went to bed with a pit in my stomach and awoke with a pit in my stomach.

My husband is out of town.

My kids are not doing well.

I feel alone. And hopeless.

I feel like everything I've done has been in vain. I'm trying so hard not to "lose the faith," but on days like today, it feels too hard. We had a rough night last night. The kids were up a lot crying...and scratching...and bleeding. Crying some more. 

I got these fancy eczema clothing items in the last week. Some Komfy Cotton footed pants (and matching onesies), which Adalyn desperately needs as she rips her ankles open at night. 

I got some for Landon, too, but not because he scratches at his feet. Just to keep him exposed as little to whatever residual detergent is in our house (which, from the looks of their skin, must be a lot) as possible. I didn't think through the fact that Adalyn's a thumb sucker when I bought the Scratch Sleeves or the Scratch-Me-Nots or the Komfy Cotton onesies that have the little built-in mittens. I also didn't think through the fact that she's two, and to suddenly try to cover her hands at night is just not going to happen. She freaked out so much she threw up, so off they went. I guess there's nothing I can do to prevent her nighttime scratching aside from covering up all the parts of her body I can so that she can't get to them to scratch them. 

Last night, she managed to go through both Komfy Cotton outfits I have for her in about 15 minutes. First spilling milk all over one and next, well, let's just say she has a tummy bug. So I had to put her to bed in normal clothes, so this morning her ankle looked like this.

I never get used to the blood-stained sheets, or the fact that their clothes will always have some spot of blood on all times. Ten minutes after I put on Adalyn's clothes for the morning, there is guaranteed to be blood on them somewhere. The same has been happening to Landon. His pack and play has blood all over the netting, because he runs his face all over it to scratch himself. You can cover his hands with socks and onesies with mittens and scratch sleeves all you want, but he'll find a way to do some damage.

Then I learned that the so called "natural" cleaner I bought in mega bulk (as in, almost $300) the week before I found is likely a detergent, and I'd begun using it in the last week for everything from cleaning surfaces to laundry. The ingredients seemed so benign. I had no idea it could be a detergent, but it could explain the massive setback we've now gone through.

So now I'm supposed to go through and re-superwash everything I've washed in the last week, which is pretty much everything. It makes me want to ram my head through a wall, to be honest, because...I don't even know. Just because this is hard. This is so, so hard. I had no idea how horrifying eczema could be. None. 

We have had to isolate ourselves from everyone. First, to avoid detergent exposure. Second, to avoid what people say to Adalyn (and Landon, too, but he doesn't understand, thank God). Even children tell her she is gross or her skin is gross or what is wrong with her face?! They can't help it. They don't know better. But I can't let Adalyn be exposed to that right now. I'm not ready. 

Then there's the infection angle. Adalyn is very infected. This happens. Usually it heals on its own. In fact, it always has. We've never done antibiotics for it or anything like that. But it's pretty bad, and our doctor wants to treat her with antibiotics to prevent a systemic infection. 

The problem with that is that the only time we've ever given any of our children antibiotics was in December, when Adalyn had strep and scarlet fever. Her skin, which was mostly fine at that point, suddenly erupted into almost what you see today. It started more mildly, and over the months, has gradually gotten worse and worse. So there is a huge part of me that is terrified to give her antibiotics for fear that she could actually get worse.

I don't know what to do. We've invested close to $2000 in the last few weeks to fix this problem. far...nothing. No improvement. In fact, it's worse than ever. Not even the nice weather, which I have always surmised would be the cure-all for us, is helping. 

Luckily I have AJ from to keep me in check, and she has assured me that this happens sometimes. It gets worse before it gets better. I am clinging to God today, trying to rest in His promise. My poor kiddos are miserable. I'm miserable for them. And I feel helpless. As a mama, I would argue there's almost  nothing worse than seeing your babies sick and in pain and being able to do nothing to relieve it.


If it's possible, today they're even worse. :(

She woke up covered in blood. 

Wednesday, May 1, 2013

Why your child may not have a food intolerance, after all

Or why I'm learning that everything I've thought was true may be wrong.

I want to start by saying that none of this detergent business will ever change my opinion that the only foods we were ever meant to consume are the ones straight from the earth and not chemically or genetically altered by man. For me, that's a common sense issue. Our bodies were created in an amazing way, and regardless of your beliefs, it's hard to deny that for all of time, we've been eating food, and then suddenly, in the last 5 decades or so, we've begun to eat food-like products. Perhaps someday we'll evolve to eat these products without harm, because our bodies are amazing and adaptable. But we know that evolution takes a long time, so as for me and my family, we're sticking with foods that we know our body recognizes as food. We have far too many diet-related diseases these days to even attempt to make the argument that the Standard American Diet is good for anyone. The only argument that seems legit is that it's worth it to continue to eat the Standard American Diet, regardless of side effects, because, like smoking, they often take a long time to manifest and it's hard as a species to discontinue pleasure now because of something we are at an increased chance of experiencing down the road. Look at how long it took for smoking to became more uncommon (but it certainly still exists!). Even I stop at McDonald's sometimes, get Starbucks when I'm out shopping, eat chocolate chip cookies. Because I find a way to convince myself that the side effects from the food-like products are worth the satisfaction of eating them (or the ease of preparing processed foods, or the decreased cost of buying them, etc., we all have our own justifications and only you know if it's truly worth it).

However, this detergent discovery has really changed my thoughts on food sensitivities. A.J. Lumsdaine, the author of, said this in an article I read:

"Eczema in babies is often blamed on food allergy, but A.J. knew from her chemistry lab days how hard it is to wash chemical residue from glass or plastic containers. She suspected some of her son’s apparent allergies were actually a reaction to detergent. When he first began eating solid foods, he seemed to be allergic to everything. For instance, he broke out in a rash after eating plain rice porridge A.J. had cooked herself. However, when she switched to soap-based dishwashing cleanser and washed away the detergent residue on the rice cooker, the baby began to eat her home-cooked porridge happily with no reaction. Store-bought foods were also a problem for him. “Many processed foods, especially produce that has to be washed as part of the processing, seem to contain enough traces of detergents to give our son contact eczema,” A.J. says. “It’s interesting to note that many of the foods people think of as causing eczema are also ones likely to accumulate detergent residue from processing, such as eggs and some dairy."

Just a few weeks ago, I was lamenting the fact that Landon appears to be allergic to every food. It's been a rare meal that I've sat him down to where he hasn't started violently scratching his face to the point of a blood-soaked bib. Inside, I was frantic. The idea of having a child who is allergic to almost every food rocked me to my core, and I was terrified. It seemed as though each child was becoming more and more allergic than the one before. Ben is allergic to peanuts (this is a true allergy which has been confirmed with IgE levels), Adalyn appeared to be allergic to all sorts of things though I hadn't been able to specifically pinpoint them and Landon? Well, he was pretty much allergic to every food I'd tried. Or so I thought.

Just two weeks ago we visited an allergist and were contemplating whether or not to run all the tests he had ordered for Adalyn (which we knew would set us back a couple thousand dollars and cause her quite a bit of pain and discomfort and the results of those tests are never accurate). I've seen enough difference now in just a few short days that like I said yesterday, I'm pretty confident I can declare this a reaction to detergent. And since washing our dishes in Dr. Bronner's diluted in water, Landon hasn't had one meal episode of intense face scratching. He's been eating the foods I've given him without incident. As has Adalyn, who also often appeared to turn red all around her mouth and began scratching after many meals. Because of that, I'd declared her "sensitive" to citrus, tomatoes, dairy, melons, wheat, the list goes on. That poor child was eating just a handful of foods because I was certain she was allergic to everything.

That's not to say there won't still be an element of food sensitivity to her or Landon's eczema. But my theory is that eczema causes a weakened immune system (which is why my kids are ALWAYS sick), and a weakened immune system can contribute to the body's inability to process certain foods. Totally my theory, but I'm so curious to see if once their skin clears up, they stop getting sick every single week and they begin to be able to tolerate any food I give them.

Truth be told, it would be much easier for my children to have a food intolerance than a detergent intolerance. Much. But if that's not the reality of the situation, it does me no good to keep on assuming it's a food intolerance when nothing I've eliminated has worked for them. The health world is so inundated with claims that we are now allergic to everything that it's become ingrained in my psyche that my children must have food intolerances.

This detergent thing is rocking my world, though. Could it be possible that what we have grown to believe is widespread increases in food intolerance (not allergies, which are testable) are actually a widespread reaction to chemicals (detergent)? It's not that crazy a theory, right? Maybe our gut issues are actually coming from detergents. The majority of our immune system is in our gut. It could of course all be coincidence, but for the first time since I can remember, Adalyn has had two days of zero digestion issues. I won't elaborate further, but she has been plagued with tummy issues for as long as I can remember, which got much worse after her one round of antibiotics in December. Last night I was talking with my husband about it, and was like, "There's no way it could be from the detergent," but he reminded me that our immune system is in our gut, and as A.J. noted above, this detergent is getting into the gut at each meal via the dishes we eat on and the washing of the equipment used during processing. It could be just as likely that it's the detergent our bodies are reacting to as it is the food. Detergent is naturally irritating to skin, albeit for some people, not enough to notice, so it doesn't seem too far-fetched to assume it is also irritating inside of our bodies.

Like I said above, it's easier to eliminate a food, or a food group, than it is to avoid detergents, which are everywhere. And it breaks my heart, because what does this mean for my children...for our family? My parents are coming this weekend, and we are going to great lengths to assure they don't bring their detergent with them. We're buying scrubs that they can wear while they're in our home, which I will be superwashing before they get here. They'll have to shower in Dr. Bronner's before coming over and will be using our toothpaste while here. My mom has to wash her face and they have to leave their shoes in our garage. Even their luggage can't come in. How sad is that?

While it's easy to make a peanut-free bubble for Ben because there has been so much mainstream attention surrounding the peanut allergy epidemic, will I live to see a day when science recognizes that detergent is harmful to the health of everyone and it will be systematically removed? Or will this just be something my kids deal with for life. Will we have to refrain from having playdates at our house forever? What does this mean for our family? The questions are flooding in now, and I'm overwhelmed, but all the work in the world is nothing for my sweet babies. As long as they are without pain, it's all worth it.

Monday, April 29, 2013

Our story

My children have had eczema their whole lives. We have three kids, and none of them were spared this disease that sucks away at quality of life.

My first son got his at around 12 months, and his was contained mostly to his face and diaper area. We tried all we knew, but nothing except time helped.

 He "outgrew" his eczema for the most part, but on occasion a minor face rash will reappear.

We thought we'd escaped that fate after our daughter made it to almost 18 months with no sign of eczema. She did have a pretty bad diaper rash, but it never occurred to us that it could have been her body's manifestation of eczema.

And then, in December of 2012, it began. Our third son, who was about six months old at the time, started getting the same facial rash our first son had. And our daughter began breaking out in eczema all over her little body.

Over the months, we've watched it wax and wane, with no real pattern that we can determine whatsoever. Some days (hours, minutes even), it's awful. I cringe even looking at them, my heart breaks for them. Some moments it's better. But never has it ceased since it began.

They are prone to infection from the constant scratching and tearing open of their skin, which science proves carries more staph than those without eczema.

These last few pictures were taken recently, and as you might imagine from seeing them, pushed me to serious action.  My children are miserable, and our family has suffered tremendously lately.  Sleepless nights and behavior problems have been just a handful of the unpleasant side effects that go along with eczema.  But most importantly, seeing the pain on the faces of my children, I knew that enough was enough.  I was determined.  A determined mom will find a way.

And it was with those frustrations that I sat in the shower this past Thursday afternoon and I bawled.  And I begged God to heal my sweet children.  I begged Him to help me find a cure.  And on Friday, I took to Dr. Google (for the millionth time), but my gut told me to dig in.  The first few pages are always medical literature or news articles.  But my gut told me I needed to find some blog posts written by moms whose children had severe eczema and who were able to cure it.  Surely this existed!  So I dug in, to page 10, page 15, page 20...and eventually, I found it.

I found one blog written by a mom who linked to another.  She had cured her child's eczema by removing detergent from the home, a theory one mom on a mission developed eight years ago that completely cured her child.  That mom, who runs, is incredible.  She has a science background, which no doubt helped her on her journey to solving her son's eczema.  

She has spent eight years gathering impressive data, speaking with chemists, doctors, biologists, etc.  The slideshow on the front page of that blog sucked me in, and a few minutes in, as she reads a letter from a mom who had tried everything for four years (elimination diets, naturopathy, herbs, chinese medicine, allergy testing, every cream imaginable, steroids, etc.), I began to weep.  This was it.  

This was our cure.  I knew instantly.  There was zero doubt.  It began as I read of the diaper-eczema connection.  One way to determine if your child has a detergent sensitivity is if your child has a clear diaper area.  The diaper is a non-detergent source that protects your child from the detergent residues in their clothing.  I knew instantly.  When we'd cloth diapered, which was washed in the same detergent-based laundry soap as everything else, our children had eczema all over their diaper areas.  When we switched to disposable diapers after becoming overwhelmed when my last was born (two in diapers, two children 17 months apart and three kiddos 3 and under was too much for this mama!), my daughter's eczema cleared up in her diaper area.  And ever since, both of my children who wear disposables have had no traces of eczema in their diaper areas.

We did the patch test she recommends on her site this past Friday and we saw some definite improvement of the eczema patches on her arm that were not infected.

So I gathered up non-detergent replacements for all the detergent in our home: Weleda Tooth Gel for the kids, Earthpaste for my husband and I, Dr. Bronner's soap for bathing and washing dishes and hands, Zum for our laundry and Cal Ben's shampoo and Liquid Dish Glow for, well, shampoo and dish soap.

Then I began to "superwash" our laundry.  Ten times for each load, I washed and washed and washed. And I scrubbed every surface of my house with Dr. Bronner's soap (diluted).  

Last night, I washed every member of this family in Dr. Bronner's soap and we went to bed in clean clothes and clean sheets.  And this morning?

A few days ago, it looked like this:

And my daughter, who definitely has it the worst, looked like this this morning:

And her wrists, which looked like this just a few days ago:

Now look like this:

The only eczema on their faces is the scabbed and infected patches.  I am floored by how well their eczema is already healing.  FLOORED.  

We are only halfway through the cleaning process.  I know we still have tons of detergent residues in our home, even if only in mattresses and air ducts, but that detergent dust will take awhile to clear. To see this sort of improvement so quickly is enough to move me to tears. To be able to offer my children relief is so powerfully emotional. When you've watched your children suffer, and you've tried everything under the sun, some days feel hopeless.  You begin to think you will never be able to help your child. When you actually witness another child tell your child, "Ew, gross!" when looking at her skin, you will do anything out of desperation. We barely leave our house anymore because we can't escape the unrelenting questions and opinions. My daughter is becoming old enough now that I know she is only a few months away from being able to understand that people think she is gross. You might as well rip my heart right out of my chest and chop it to pieces.

I'm starting this blog as a way to journal our switch away from detergent products.  Because I so desperately sought out others whose children had the severe form of eczema our children do, it wasn't even a question that we should document our own journey, in hopes that even one other mom can find solace in knowing that other children have experienced this, and other children have been helped.

Probably most importantly, I want to push as much traffic to as is humanly possible.  The lengths this mother has gone to, the research she has done and the hours upon hours she must have spent compiling it all for her website, well, there are just no words to describe my gratitude.  She has changed our life.

I feel like I can already say with confidence, even though we are a long way from being totally healed, that detergent is our main problem.  There may be other issues that are contributing, but my gut knows this mother has stumbled across the "magic" cure.  I believe in my heart that she will be instrumental in curing eczema (and possibly asthma and allergies) and all but eliminating it from the world.  

I'm so excited for our journey ahead!