The Eczema Kid Story

The Eczema Kid

My daughter, Daniela, and I stood in line at her daycare to pick up her yearly photos. The mom in front of us held the photos of her daughter, who had long blonde curls, in the air and shrieked, "These are gorgeous! Aw, you look so cute, sweetie," and kissed her perfect little angel. As the two walked away smiling, the photographer nodded:

"Yep, she'll be a model one day!"

We were next. The saleswoman dug through the stack of large envelopes and pulled up the one with my child's name.

"Daniela, the eczema kid!" she exclaimed, pointing at the photo revealing the red blotches on her cheeks and arms. I gasped. She leaned closer to me, attempting to whisper," You know, we can do a photo touch-up to remove those spots for just an extra $6!"

Her voice could easily be heard at the end of the hallway. I looked at my five-year-old.  As always, she paid no attention to comments about her skin. She just stood next to me scratching her arm until it started to bleed.

"No, thank you, the photo looks fine the way it is," I replied.

I hastily grabbed the photos, took Daniela's hand, and quickly walked away.

What’s Wrong with My Baby’s Skin?

Daniela's eczema started when she turned four months old. At first, my husband Bob and I noticed just a couple of red spots, which appeared on the creases of her arms, and the skin all over her body felt dry. At the time, it seemed like no big deal. After all, it was a chilly January here in South Florida.

"It's just the cold, dry air" her pediatrician stated. “Next week it will warm up, and her skin will get back to normal."

The following week, the temperatures were back to normal indeed, but Daniela's skin was not. The small spots grew into a widespread rash and inflamed red blotches. Within two years, eczema covered most of her arms, legs, belly, and back. After another couple of years, it showed up on her cheeks, forehead, and eyelids. She scratched non-stop. It was common for her to have bloody scabs all over her body. And she woke up every single night scratching even more. All of this was the normal daily state of her skin. As if this weren’t bad enough, then there were the flare-ups! Suddenly, out of nowhere, her skin randomly went on strike, ending with inflamed red blotches on about 80% of her body that she scratched uncontrollably.

Lotions and Potions

We tried everything. Ton of creams, allergy medication, bath salts. Anything with the name eczema on it, we tried it. We found things on TV ads, late-night internet searches, recommendations from friends and well-meaning strangers. With each new lotion or medicine, I prayed that the next day she would wake up with baby-soft skin, and I would be writing happy testimonials. "My daughter suffered from eczema, and nothing helped until I came across your miraculous XYZ cream."

"Not happening again," I gritted my teeth and told my husband, Bob, for the forty-sixth time as I tossed the XYZ #46 into the garbage. Frustration, along with eczema, lived in our house.

Trials…but All Error

During Daniela’s toddler years, we saw one specialist after another. 

"Daniela has atopic dermatitis," the dermatologist said within two seconds on our first visit. "It's a chronic condition that will never go away. We just need to control the flare-ups," and with that pronouncement, we walked away with a prescription for a steroid cream. On each visit, the doctor switched to another brand of steroid cream, since none of them worked, and often had to prescribe antibiotics to prevent skin infections. 

Another specialist, her pediatric allergist, said, "She needs a lot of medicine, that is the only way to keep eczema in control," and prescribed a double adult dose of antihistamine to curb the itching. The dosage increased with each visit, with no result. By the age of three she must have ingested more medicine than I had in my whole life, I thought.

When the “traditional” medicine made no difference, we decided to try “alternative” healing. The homeopath handed us a bunch of little bottles with sweet, tiny white pills. Daniela loved them, but her skin didn't. The Chinese acupuncturist declared that she was just a sensitive kid who holds emotions inside, and if she spoke about them, eczema would go away. As absurd as it sounded, we talked. Her skin didn’t improve. None of it worked—and sometimes the proposed “remedy” just made it worse.

Detective Mom

I played a detective, trying to identify any foods or other triggers, documenting page after page of her daily meals and interactions. She was so red last night—it must have been from the tomatoes for dinner. Or was it the milk she had for lunch? Or cat dander on the clothes of my friend who came to visit? There was no logic, no connection, no clues.

Allergy testing was the next step. I clenched my teeth when Daniela screamed hysterically as the nurse drew her blood. Then she drew a grid on her back and scratched her with various allergens during the skin prick allergy test. The results came back positive for eggs, dairy, and wheat. We eliminated all foods with these allergens from her diet, yet the change made no significant improvement in her skin condition.

Itchy, Itchy, Itchy

The word "itchy" became the most-used word in our household. When we met Daddy at home after work, his first sentence was not "How was your day?" but "How itchy is she?"

The night we got Daniela's photos at the daycare, I laid in bed next to her and rubbed her legs to give her some relief. Her skin was constantly as dry as a desert and hot to the touch. It always amazed me that no matter how many layers of cream went onto her body, the thirsty skin soaked it right up and dried immediately.  She couldn't fall asleep at night. She lifted her arms and legs up at a ninety-degree angle as she was scratching away.

"The girls in school did not want to play with me today," she said suddenly.

"Why, baby?" I gasped.

"Because my skin is not perfect," she said and looked at me with big, puffy eyes. I kissed her bright red cheeks and stroked her permanently greasy hair, which soaked up the lotions and creams, despite our washing it every single day. This was the first time she’d mentioned that others noticed her eczema. It's starting already, I thought. Is she now labeled "the eczema kid" not only by the photographer but also by her schoolmates?

"That's okay, sweetie. You will always be perfect for Daddy and me." I squeezed her tight to protect her from the cruelty of the world.

A Living Nightmare

Eczema affected just about every activity in our lives. Daniela couldn’t enjoy the outdoors, and inside wasn’t much better. When we went to the playground, her itchiness doubled in the hot and humid South Florida air. Going to the pool was out of the question, as well, because chlorine dried her already parched skin even more. And forget about going to the beach, since she screamed as soon as the salty ocean water touched her open sores. The summers in South Florida were long and dreadful. We were seriously considering moving to New Jersey.

Normal everyday activities were affected too. "She was so itchy again!" her teacher, Ms. Martha, said repeatedly with concern in her eyes when I picked up Daniela from daycare. "What can I do to make her feel comfortable? It breaks my heart that she has to deal with it!"

Inside, my heart was breaking. I wanted to scream, If I knew, I would be already doing it, don't you think?! Instead, I quickly walked away before she could see my tears.

Daniela screamed every night in the shower as soon as the first drop of water hit her inflamed skin. We had to keep our bathroom window closed so our neighbors didn’t think we were abusing our child.

Travelling was a nightmare. I counted every minute during the long flights to my native Europe when the dry airplane air made her already-dry skin feel like sandpaper. Her itching was so intense that she did not sleep for even a minute on an overnight flight. I walked up and down the aisle for seven hours, holding Daniela, who was scratching and sobbing, trying desperately to ignore the angry faces of the other passengers.

From Bad to Worse

Over time, Daniela’s itching went from bad to worse. There were no "occasional" flare-ups anymore. It felt like her body was in a permanent stage of a flare-up as she rubbed her arms, legs, and hair non-stop. She no longer woke up once or twice a night—now it was every hour or hour and a half. And even when she was “asleep,” she was still constantly scratching her body. In the morning, she woke up looking like she had been through a fight, with bleeding cuts on her face and body and red stains all over the sheets and pillowcase. Her skin doctor doubled the medicine and prescribed anti-itch creams left and right. Results? Zero improvement.

Sweet-Natured Kid; Sleep-Deprived Mom

Amazingly, although Daniela had her cranky moments when the discomfort was really intense, most of the time she managed to be a happy kid. The constant itching was an annoying but integral part of her daily life, and she grew up with it like an annoying twin sister. Despite her lack of sleep, her kindergarten school report was one of the best in the class.

I, on the other hand, was a sleep-deprived wreck. The circles under my eyes grew darker each day and contrasted intensely with my pale face. The vertical furrow between my eyebrows that used to occasionally appear during stressful times became a permanent fixture. I fell asleep within two minutes of watching TV on the couch, in the movie theatre, and even in the waiting room of a doctor's office.

My sleepy brain affected my job and I was forgetting tasks and deadlines almost daily. To get through the day, I took naps in my car during lunch breaks. On a random Wednesday afternoon, when I yawned about twenty times, my boss abruptly called me to her office. She knew a bit about Daniela's condition and had so far been very understanding when I had to leave work early from time to time after a frantic call from Daniela's teacher.

"Just go, I get it. I'm a mother too," she always said. I was still nervous. Was that about to change today? Was she going to bring up all my absences or scold me for last week when I forgot to launch a project because we’d slept only four hours the night before? Would she give me a warning? The thoughts were swirling in my tired head.

“Is everything okay at home? You look really tired lately,” my boss asked.

My eyes started burning. I looked up to the ceiling to cover the hot tears relentlessly intruding, attempting to make their way down my face.

“How is your daughter? Is she still battling eczema?” she continued.

“Yes. It’s gotten a little worse,” I whispered.

“A little?” she asked.

“No…” I exhaled and paused for a minute. “It’s terrible. Most of her body is covered with eczema—she itches so much! We don't sleep at night.” At that point, my gentle tears developed into a full-blown cry. It was unstoppable. Where is this coming from? I thought as the years of stress were pouring out my eyes. I always kept it together. I prayed. I hoped. I begged. But I never cried. Not once. Not in front of Bob. Not in front of my friends. Not even when I was all by myself, and today I was weeping in front of my boss.

Taking Matters into My Own Hands

After visiting countless specialists, I came to the conclusion that no doctor is able to help us. My internet research got longer each night, but I was determined to take matters into my own hands.I ordered books on how to heal eczema naturally and read them in one weekend, making notes with a highlighter. My kitchen filled up with items never present before, such as flaxseed oil, mung beans, and quercetin. Each morning I set an alarm twenty minutes earlier to juice organic fruits and vegetables, then mix them with vitamins and supplements—Daniela’s new breakfast drink.

At first, the effort seemed to pay off. Perhaps her body got a shock with the influx of fruits and vegetables. Shestopped itching for a few days, and her raw, red patches started to heal. I put all her steroid creams and antihistamines deep in our medicine cabinet determined never to use them again. I felt proud and was convinced that I had finally figured it out. But little by little, her skin went back to its "normal" state—red, itchy, and bleeding. A couple of days later, I had to reach back for the antihistamines, but I tried to limit them as much as possible.

Who’s Right?

While the Western medicine fought with my alternative approach in Daniela's body, Bob and I had daily fights.

"She needs her allergy medicine; can't you see how miserable she is?" he angrily yelled while pointing at Daniela, who was scratching both arms.

"No, we need to give this a chance for few more weeks! " I argued.

"Well, your diet is clearly not working," he shouted back.

"The medicine was not helping her anyway!" I slammed the door as Daniela and I walked out of the house. That day we went to the ice-skating rink. Keeping her active and doing something fun was part of a strategy to keep her from scratching. Daniela quickly picked up on skating—within minutes she decided to ditch the learner's cart and skated slowly, her legs shaking, holding my hand in a tight grip. After skating, I watched her jump and run around in excitement, watching the Zamboni machine making its way up and down the ice rink. Suddenly a petite blonde woman approached me.

"If you don't mind me asking, does your daughter have eczema?” she inquired. “I noticed her red cheeks.”

"Yep, for quite some time now," I answered quickly, but I thought, YES, and it's none of your business! Then I called Daniela, "Let's go, baby! It's time to go home!"

People stopped us every now and then, especially when the redness spread to her face and could not be covered easily like on her arms and legs. They all had some sort of remedy, most of which we had tried…and they hadn’t worked. I wondered what this lady was about to suggest.

"My name is Silvia. I’m a functional medicine doctor, and I specialize in allergy testing. Has she been tested for allergies?” Oh great, I thought. This woman was not even a well-meaning stranger; she was just trying to sell me her services!

"Yes, we did all that. And we’ve tried dozens of creams, antihistamines, homeopathy, Chinese medicine, you name it," I replied.

Her next words were about to change our lives: "Has she been tested for delayed allergies? She may have some that you don't know about, which cause her skin to flare up.”

I stopped for a second. "Delayed allergies" was not a familiar term. None of Daniela's doctors ever mentioned allergies that would be delayed.

"I went through the same thing with my son,” she continued. “When he was five, I found out he had a delayed allergy to coconut milk, which I used to give him every day! Can you imagine?"

There was something calming in her smile.

"You're sweet, but I gave up on doctors. None of them helped her for five years. I’ve taken matters into my own hands now. We have to go." I said quickly and grabbed Daniela's hand. 

"Sure, I understand! Here is my card, just in case,” she pressed. “If you want to give it a try, please call my office. I think we can help her.”

Outside the skating rink, I was tempted to put her card straight into the nearest garbage can. Something stopped me. I hesitated for a moment and then shoved it into the bottom of my purse.

Delayed Allergies Are a Thing

That night I stayed up late researching delayed allergies. As I was falling asleep, Daniela opened the door of our bedroom, stumbled into our bed, and lay down between Bob and me. Every night like clockwork, she woke up itching and came to our room. I rubbed her arms and legs with cream, which helped her fall back asleep. About an hour later she woke up again, arms and legs up in the air, nails digging deep into her skin. The sound of my child lacerating her skin drove me insane.

"Stop, Danielko," I whispered. She didn't hear me, still half asleep, her eyes closed. “Stop! Please stop scratching," I raised my voice.

"I can't stop, Mommy," she said sleepily and kept digging, bloodying her skin. I grabbed her wrists and held them so tight she couldn't move.

"You have to stop now! I can't take it anymore! Every single night! We haven't slept through the night for years," I shouted and shook her hands.

"Ouch, that hurts!" Daniela started crying.

"I don't know what else to do! I'm trying so hard, and nothing works. I'm so tired of it!" I yelled.

"That's a little harsh, don't you think?" Bob chimed in. Normally a bomb set off next to him would not wake him, but my yelling must have been louder than that.

"Here, baby," he said gently. "Let me put some cream on you."

I got up from the bed and kicked the decorative basket next to it in anger.

"Don't go, Mommy!" her little voice was crying.

I stormed out of the bedroom, slamming the door behind me, and collapsed on a sofa in the office. I buried myself, my head included, under a thin blue blanket. I heard Daniela's frantic sobbing from the bedroom for one more minute before I passed out, exhausted.

The next morning came quickly. I hoped Daniela would not remember anything from my 2 a.m. meltdown. I made her favorite gluten-free pancakes for breakfast. When she came downstairs, she did not run to me as usual but went straight to her play corner in the living room without saying a word.

"I think Mommy wants to say sorry for yelling last night, right?" Bob looked up from watching the morning news.

I walked to Daniela and stroked her soft brown hair. She looked down.

"Mommy totally lost it last night, right? " I said.

Daniela slowly nodded, her big hazel eyes finally turning to me. "You yelled, and it's not my fault! I can't stop scratching!" she explained.

"I'm so sorry, baby. I will never do that to you again, I promise. Can you forgive me?" I asked.

"Yes, Mommy." She hugged me and didn't let go for a while.

"Do you know what we are going to do today?" I asked. "We are going to call the nice lady we met at the skating rink last week."

"Why?" she asked. My only thought was: Because she has to help us.

Doctor Silvia

"Nice to see you both again." Dr. Silvia welcomed us with a warm smile when we sat down for our first appointment in her office. She took time to go over Daniela's diet and every medical detail of her life, making detailed notes, starting with her birth. We left with several prescriptions for various tests. (In Florida, doctors prescribe any tests.) This included a blood test for delayed allergies, where Daniela would be tested for allergic reactions to more than 300 items, from food to chemicals. Dr. Silvia explained that delayed allergies can cause reactions hours or even two or three days after eating the foods or being exposed to the chemical or pollutant, and due to the nature of a delayed reaction, tracking these allergies is almost impossible. The plan was to temporarily eliminate all the items Daniela reacts to from her diet and environment and let her immune system calm down, regenerate, and get stronger.

This explanation made a lot of sense to me. That same day we also went for Daniela's monthly check-up at her allergist. When I mentioned our meeting with Dr. Silvia, the allergist laughed at me with an arrogant smile.

"Do you really think those tests will show anything that we don't already know? You're going to waste hundreds of dollars on this so-called 'doctor,' trust me. Daniela needs allergy medicine for the rest of her life. That is the only thing that can keep things in control!" She was adamant.

I thought to myself, Have YOU helped her all these years we have been coming here?? I thought. "We have nothing to lose, doctor," I said.

We went ahead with the testing the very next week. Blood draws were no fun with a squirming child who started screaming full blast before even entering the testing lab, but I felt that we were finally moving forward.

Allergic to the “Cures”

The test results could not come soon enough. I gasped as I read down the list of results. She has a severe delayed allergy to apples, which she loves and has in her lunch box every other day! Next on the list, sugar and all types of sweeteners including honey. Sugar, that's in a number of different foods, even in her allergy medicine! The most startling thing was her severe allergy to BHT and sodium benzoate, which are common food and cosmetic preservatives. I ran to grab her allergy medicine bottle and cream. Sure enough, they were on the ingredients list in both products. Ironically, both the cream and medicine were prescribed by her allergist, who insisted she use them three times a day.

The realization that I had been feeding and covering my daughter's body with things she is severely allergic to (not to mention prescribed by her doctor, a specialist), made me sick to my stomach. All the previous attempts to get her better suddenly seemed completely backward. We had wasted years of time and my daughter's health. And to think that I almost threw away the chance for her to get better!

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Starting the Plan

The very next day, we went ahead full force with the plan suggested by Dr. Silvia, which included removing all reactive items on the list from Daniela's diet and environment. At first, eliminating sugar, gluten, dairy, and eggs made me wonder if there was anything left for her to eat besides rice, meat, and produce, but with help of health cookbooks and the internet, I was able to quickly find "safe" and nutritious meals. On each trip to a grocery store, one could find me standing in the shopping aisle as if I were in a library, reading through the lists of ingredients on each item going into my cart from a can of tuna fish to spices.

Cooking dinner for our family often meant cooking two separate dishes; sometimes I put Daniela's portion away before adding other ingredients to the dish for the rest of the family, or occasionally the whole family ate a gluten/dairy/sugar/egg-free meal. At a restaurant, my daughter either brought her own lunch box or dined on the most expensive item on the menu—steamed lobster, "no butter, please"—simply because there was nothing else suitable. We thought of it as her occasional treat, instead of a candy bar.

To find a bread with no gluten, eggs, sugar, or yeast was an impossible task, even in health food stores. We started to order it online.

As expected with a five-year-old, the toughest part was saying good-bye to sweets and candy. Taking away her Halloween goodies or a cookie from a classmate lead to many teary moments at first. Later on, after numerous explanations and especially once she started to feel better, I overheard her saying: "No, thank you. I'm allergic!" with almost a sense of pride. 

Every morning and night she drank a glass of juice with probiotics, omega oil, vitamins, and other supplements to help repair her immune system after years of using steroid creams and antibiotics. 

We had a "custom-made" antihistamine without her reactive items mixed at the compound pharmacy. We also stopped using the prescription steroid cream immediately and started to use a natural moisturizer with no harsh chemicals. It finally felt like our lives had started to take a turn for the better.

What a Difference

After a couple of weeks into her treatment plan, I noticed Daniela’s bloody wounds beginning to heal and no new ones appeared. Another week later her red inflamed blotches started to disappear and those stubborn rough patches slowly became softer. The new cream I put on her body did not immediately soak in, and the itchiness was less intense. One Sunday night, I realized that the last time I’d given her anti-itch medicine was three days ago since she was not scratching! She also started to sleep longer stretches at night. 

Two months later, it felt like we had a different child. For the first time in five years, the redness was completely gone and her skin felt soft like that of a healthy child. The itchiness had mostly disappeared. Seeing my child not scratching felt like a different reality. For the next few months, I did not take my eyes off her and panicked when she tried to scratch a mosquito bite, thinking that her eczema was coming back. But it didn’t!

There were many other firsts that summer. She splashed in the pool without crying and played in the ocean with a big smile on her face instead of screaming as soon as the salty water touched her skin.  The first night she slept through to the morning in her own bed, I woke up at 5 a.m., confused.  I ran to her room, thinking something terrible had happened. I found her sleeping peacefully with her arms behind her head.

All three of us started to have dreams at night, something we hadn’t experienced for a long while due to the interrupted sleep. Dreams were a new concept for Daniela, who excitedly described what she “did last night.”

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Our Lives A.E. (After Eczema)

At the end of her kindergarten year, I picked up Daniela and an unopened bottle of antihistamine. In the teacher's notebook was written, "Did not follow directions today and ran around in the room."A new chapter of our life had just started, and a new kind of trouble was on the way. But after winning the eczema battle, we were sure we could handle anything that comes our way.

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To read about Our Path to Recovery, click here. 

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To read more about Delayed Allergy testing, click here.