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.

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. I had misdiagnosed Landon and just assumed he was totally fine now that he was on antibiotics, I 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!

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 them...at 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 solveeczema.org 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. But...so 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 solveeczema.org 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.

UPDATE:

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

She woke up covered in blood. 

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 Solveevzema.org, 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.