A Very Itchy Christmas (Or: Atopic Dermatitis, a Primer)

Before Christmas, I felt like I was drowning.

Always close to tears; edging toward a breakdown.

No one seemed to understand, though of course I couldn’t fault them.

“Eczema? Yeah, my baby had that. This-or-that cream worked wonders. I just moisturized more often.”

Even the doctors: “This is a well baby with a rash. It’s mild eczema—you don’t even want to see severe eczema, believe me.”

“Oh, he’ll grow out of it in a year or three or five.”

I had nothing to compare, so I tried to believe it wasn’t such a big deal. Maybe I was overreacting. Just moisturize.

I, too, had eczema once. On my elbows. It was dry, sure, and it was itchy. It was annoying. I rubbed on some hydrocortisone and it cleared up in a couple days.

This is not that.

Remember your last mosquito bite? Remember that intensely itchy sensation, especially right before the welt appears, when all you want is to scratch?

Imagine that sensation engulfing your entire body.

And then, imagine someone restraining your hands, your feet, doing everything they can to prevent you from doing the one thing that seems relieving.

Sound like torture?

This is what my son felt, and feels. Daily.

Before Christmas, a trip to warm, humid Hawaii was the light at the end of my dry, ice-cold, skin-cracking tunnel. Late November and early December were dark for me.

More stressful than planning a wedding from the opposite coast.

More stressful than my Master’s program.

My entire day and night consisted of trying, unsuccessfully, to keep Luca from scratching himself, to keep him moisturized, to help him sleep. In photos from that time, I look ill.

I was scared: Sometimes Luca’s skin looked sunburned, sometimes mottled red, sometimes bumpy. Always itchy. I’d prayed for wisdom in raising my son since my pregnancy, but I felt lost.

His sixth month of life, Luca was rarely happy.

Some days he looked better, and I was hopeful. Then devastated when it got worse. Ups and downs wore my emotions threadbare.

Atopic Dermatitis (which I will call it, since the common name, eczema, sounds far less serious) has degrees, and Luca’s escalated its way, flare-up after flare-up, to severe.

I’ve watched with horror (and a touch of pride) the last three months as Luca’s problem-solving skills found increasingly creative ways to scratch his persistent itch.

Lying on the ground? Sweet, I’ll just wiggle and scratch my back! Sitting in a chair? I’ll rub my arms along the sides. Cuddled in the Ergo carrier, usually the great neutralizer? Ooh, these rough nylon straps are perfectly at elbow height.

Then there’s the vaguely disco car-seat dance. It would be adorable if it wasn’t so frustrating.

Rub, scratch, wiggle, and here comes a rash. There goes a patch of skin. Here comes ooze. Peeling. Pain.

Ever wonder what your skin would look like if you kept rubbing? Me either, but now I know.

Toward the end of December, some friends started to catch a glimpse. “What do you do with him all day at home when he’s like that?” a neighbor asked. I shrugged.

There was one reprieve, just in time: I joined a Bible study of a few women on base, women who prayed with me. Women who saw me teetering on the edge of what I could bear, and embraced me. One of them has a daughter with the same problem, about a year older than Luca.

She’d been there. She knew. She was a Godsend.

I would call her at Luca’s bedtime, fretting over some new outbreak. She would talk me back from the edge; give me tips on how to ease his suffering. She showed me which humidifier to buy, and where to order special Scratch Me Not sleeves with silk mittens to lessen skin damage and hair loss (the sleeves finally arrived late last week).

Of course, Christmas in Hawaii would fix all my problems. The warm, humid weather would be the perfect answer to Seoul’s bone-dry cold. I’d see my family and be happy. Joe wouldn’t be working at all. Luca’s skin would clear up.

Nope.

Not a chance.

Yes, it was wonderful to spend time with my family and to have Joe with me all the time—such a necessary break from the drudgery of fighting the scratch mostly alone.

And yes, we had fun swimming in the ocean and hiking to Queen’s Bath, a natural swimming hole formed of volcanic rock. We ate Kauai’s famous shave ice, enjoyed family meals, played with my niece and nephew, and visited my college roommate Bethany and met her cute little family.

But Luca was miserable.

I don’t think my family saw him smile until day three or four, and Luca barely played without whimpering. He was always scratching, scratching, scratching; angry when we pulled his hands away.

After an ER visit—“That is the worst case of dry skin I’ve ever seen,” the doctor said, before sending us on our way with instructions to moisturize—his skin peeled and looked miraculous. My hopes rose.

For a day.

I hate to be negative, but I won’t pretend our second week in Hawaii, in Honolulu, was fun. We watched Luca’s skin deteriorate into open, seeping sores, made worse in areas he could reach to rub with his sock-covered hands or feet.

We didn’t even go into the ocean. We went to Pearl Harbor but couldn’t make it out to the memorial.

If our vacation has a silver lining, it is that we ended up at Kapi’olani Medical Center, a hospital specializing in women and children—and they even staff pediatric specialists in the ER. Right place, right time; thank God.

Doctors took a look at our little one, oozing over probably 80 percent of his body, and admitted him until his skin was back under control. They drew blood, gave him an IV. We delayed our flight home.

Food allergies were the most likely culprit, the labs indicated. Allergy was also what was tearing up his intestines; he’d had diarrhea for almost a month by this point.

Luca was exclusively breastfed, so I cut out dairy, soy, egg, wheat, peanuts, sesame.

But it wasn’t enough.

We arrived home in Seoul on Thursday night, and by Monday, his skin was already relapsing. He rarely smiled. He wouldn’t even stand up—his absolute favorite thing to do.

We had a dermatologist appointment that day, and the doctor checked out our red, screaming infant with skin falling off his hands and feet, read his history, and recommended admission. Again.

Honestly, I was relieved. The way things were already going at home worried me. It was not sustainable.

The day after admission was so bad, anyway, I would have gone to the ER if I wasn’t already admitted. His hands and feet were cold and purple, he refused to nurse, and he would either stare into space, scream, or sleep. Nothing else.

I was scared.

Apparently dehydration and low blood sugar were to blame, since his condition improved after they hooked him up to IV fluids and he finally started eating. Our emergency put us behind in our care plan—we thought we’d only be there three days, but stayed a week.

How wonderful, though, that Samsung Medical Center has a care plan for patients like Luca. The sign in the photograph (right) points to “Atopic Disease Dedicated Ward,” a private room (with a view!) that aims to be allergen free: a hard-core air purifier, a humidifier, and a water purifier for the bath. No shoes or peanuts or ramen allowed. (Why ramen? I don’t know, but that’s what they said.)

View of Gangnam from hotel room, in southern Seoul

Doctors at Samsung research Atopic Dermatitis, using cutting-edge tools to track progress. Again: Right place, right time; thank God.

For example, in the Allergy Center, someone would stick a probe on Luca’s skin and measure its Ph level.

Another probe measured so-called “dryness index.” For perspective, normal dryness measures between 8 to 15, they told us. Luca’s neck—the worst part of the most recent flare-up—measured 150 when we arrived. It measured 50 when we finally went home, after days of multiple baths and wet dressings. After meds, tests and rest. And prayers—ours and those of family, friends and strangers (thank you!).

Luca tolerating a wet dressing

Oh, and diet change. The first thing doctors did was order me to stop breastfeeding. Luca needed to get well faster than the allergens could filter out of my body—and he could be allergic to anything.

He had never before taken a bottle.

We had to let him starve.

That transition marked probably the hardest two days of my life so far.

Harder than labor and delivery.

Harder than moving across the world.

I knew in my mind it was the right choice for Luca's health, but my heart felt otherwise. We both mourned the sudden, unexpected, unwanted end of breastfeeding. It felt wrong to refuse him, and he kept asking, devastated and confused.

I'd always imagined weaning slowly; breastfeeding at least a year. This wasn't what I wanted for my child.

And, practically speaking, the sudden stop was painful, an ache I saw as the physical manifestation of my grief.

He took the bottle, eventually. And then he started eating like a champ, sucking down hypoallergenic formula—which tastes like playdough, by the way.

Luca moving on helped me to start moving on. My physical pain subsided. My hormones and emotions steadied.

And now, back at home, Joe and I are still on edge. Every day, Luca’s skin looks worse. And then a little better, and then worse, then better, then worse.

Now, at least, we should see steady improvement. And now, at least, we’ve learned some techniques to tend to his skin. He’s been off breastmilk for a week and a half, and his intestines seem to be healing. We haven’t had a full-blown flare-up.

Luca is still itchy. And rashy. Food allergy aside, he still has Atopic Dermatitis, affected by humid air, dry air, non-cotton clothing and who knows what else—though there is definitely hope he’ll grow out of both. Eventually.

Some days I am discouraged.

The emotional up-and-down of the past few months makes it hard to rejoice with friends and family who exclaim over how good Luca’s skin looks.

Yeah, I think, It looks ok NOW, but you should see it tomorrow morning. Or, His face looks alright, but check out his back.

I do rejoice over his mood. He plays. He smiles. He laughs some. He gets excited to stand up. He sleeps! We've found new ways to cuddle and bond. And he’s growing—he gained at least two pounds in the hospital.

Honestly, I’m growing too.

A friend asked about all Luca had been through in Hawaii and at Samsung, and after hearing our saga, she said, “It must be really hard for you to be a mom right now.”

That took me aback.

No, that’s not it.

I thought a minute and replied, “Actually, it’s hard to remember I am anything other than a mom right now.”

Because somewhere over the past couple months, I truly became a mother in my own mind, not just a girl with an accessory baby to show off at playgroup.

My desperate prayers in moments of frustration have translated to character development: I see more love, more peace, patience, perseverance.

Deeper joy.

I don’t mean happiness; that’s been hard to muster lately.

I mean, when I felt myself hit my limit, I would think, What’s the alternative? Not having Luca at all?

And a protective sense of gratefulness would push me forward. My son is a gift, rash or not. Allergies or not.

My life is a gift, challenges or not. Happiness or not.

And maybe this is the beginning of wisdom.



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Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. And perseverance must finish its work so that you may be mature and complete, not lacking anything. If any of you lacks wisdom, you should ask God, who gives generously to all without finding fault, and it will be given to you. But when you ask, you must believe and not doubt, because the one who doubts is like a wave of the sea, blown and tossed by the wind. James 1:2-6