Our Son’s Skin Journey with Severe Baby Eczema: Phoenix's Story of Atopic Dermatitis (Part 1)
Let me begin by saying that I hesitated to share our story because we're still very much in the thick of it—searching for answers, navigating setbacks, and trying to make sense of it all. A part of me thought, 'Maybe I should wait until we've figured everything out.' But the truth is, that would undermine the reality of this journey: one that's been overwhelming, consuming, and at times, deeply confusing and frustrating. I realized that sharing it in real-time, with all its rawness and uncertainty, felt like the most authentic way to honor this experience. For months, I kept this struggle to myself, and it weighed heavily on my mental health. There were only a handful of people I could confide in, and even fewer who could truly understand the despair and relentless pursuit of answers. I've often wished there were more parents willing to openly share the detailed journeys of their child's healing. So here I am, opening up, in the hope that our story might offer even a small glimmer of comfort to someone else.
A little background about my son, Phoenix: He is the happiest, most talkative, and joyful baby we could ever dream of. Despite the sleep deprivation, exhaustion, and deep loneliness that come with being a new mom, nothing warms my heart more than watching his morning stretches, celebrating his milestones, and seeing him grow bigger every day. It's true what they say about the duality of motherhood—the overwhelming pride of raising your child and keeping him safe, paired with the bittersweet sadness that today is the smallest he'll ever be.
In those early months, my husband and I lived in a blissful newborn bubble. Phoenix was eating well, gaining weight, sleeping 5-6 hour stretches, and filling our days with endless joy. I remember thinking, "How did the universe bless us with such a good baby?" Truly, we couldn't ask for more. But that bliss came to an abrupt halt shortly after Thanksgiving, when tiny red bumps began appearing on his cheeks. What started as a seemingly harmless rash quickly spread across his entire body. His skin became dry, flaky, and yellow, often accompanied by an unpleasant odor. Beneath the flaky surface were rough, red, scaly patches that seemed impossible to soothe, and some areas were weepy and oozing, adding to his discomfort.
After much back and forth with our pediatricians, we finally received a referral to see a pediatric dermatologist. At our first visit, she diagnosed Phoenix with severe atopic dermatitis (eczema) and seborrheic dermatitis (cradle cap). Despite our hesitation, family members urged us to provide him relief, and with the dermatologist's recommendation, we ultimately gave in—all roads led us back to steroids.
During the first three weeks, I clung to hope, convincing myself it was just a phase and that this too shall pass. But as time passed, that hope began to fade. I spent countless hours each day immersing myself in Facebook forums, joining support groups, listening to podcasts, reading research journals, and endlessly scouring Reddit for answers. Of course, I knew every child has their own unique biochemical makeup and what works for one may not work for another. I obsessively jotted down and analyzed consistent advice or data points I came across, carefully implementing them into Phoenix's routine. Despite my efforts, there were no noticeable improvements.
Deep down, I knew the conventional doctors' answer would always be steroids. My heart was strongly against it, especially after witnessing the devastating impact of topical steroid withdrawal (TSW) on Jonathan's life. Still, I couldn't silence the voice in my head asking, ‘How could I possibly know more than doctors who've been practicing for decades?’
Each morning, as I heard Phoenix's first cry, I felt a wave of anxiety approaching his bed, unsure how much his skin might have changed overnight. No two days looked the same. Some mornings, his cheeks were raw and weeping; other days, new rashes covered his arms, legs, back, or torso. One of the most heartbreaking parts of this journey was watching him scratch his face every time he had access to his bare hands. The results were immediate—his delicate skin would bleed, and I felt powerless to stop it.
To prevent scratching, Phoenix had to wear arm sleeves 24/7, significantly delaying his motor development. My once strong and curious boy, who had mastered tummy time, could barely lift his neck because his focus shifted to scratching his face. At night, we swaddled him to keep his hands away, disrupting his ability to self-soothe and further impacting his natural development.
Within two short weeks, Phoenix lost all his beautiful brown hair. When I confided in friends, they reassured me, all babies shed their hair; it's normal. While their intentions were kind, I knew this was different. His hair loss wasn't part of the typical newborn phase—it was another consequence of the inflammation ravaging his little body. Some friends were eager to meet Phoenix, but I wasn't comfortable taking him out. He was visibly uncomfortable, and I felt a deep need to shield him from unnecessary stimulation.
Managing his flare-ups at home became my top priority. With my mom in Asia and Jonathan back at work, I was solo-parenting, which came with its own set of challenges. To complicate matters, Jonathan couldn't come into contact with the steroids applied to Phoenix's skin. He had to wear gloves and change his clothes every time he helped bottle-feed him. Watching this unfold breaks my heart, especially knowing how much Jonathan adores our baby. I can sense the silent guilt he carries, knowing that Phoenix has inherited his worst enemy.
Through it all, I've been reflecting on the profound emotional toll these months have taken. My friends and loved ones often describe me as optimistic, solution-oriented, and a rockstar problem-solver. But when none of my skills seemed to help Phoenix, I couldn't escape the crushing mom guilt. Was this my fault? Did he inherit my poor gut health, leading to systemic inflammation? And in the quiet moments, I found myself asking, 'Why him? Why my baby?'
As I questioned the universe and prepared for the long healing journey ahead, I made a promise to myself: If anything good could come from this experience, it would be sharing everything I've learned. Even if it helps just one parent going through the same agony, this struggle won't have been in vain.
Phoenix's condition robbed us of so many precious moments in those early months. Instead of soaking in the joy of his newborn days, I was consumed by worry, constantly in survival mode, and desperately trying to manage his condition. I felt like I had lost the chance to simply be present.
Amidst the chaos, focusing on the small wins—no matter how rare they were—kept me grounded. It wasn't easy, especially when setbacks seemed to happen every day, but even the smallest moments of progress gave me the strength to keep moving forward. Despite everything, Phoenix's resilience continues to amaze me. He remains my happy, sweet baby, and every day I'm reminded of the strength in his little body and the love that binds our family together.
I would move mountains for my child, and that resolve fuels every effort to help him heal. This is only the beginning of his journey, and I'll continue to share updates as I learn more.
Bath Routine:
Use no soap except for the diaper area.
Bathe daily in lukewarm water for no more than 10 minutes.
Gently remove cradle cap using the Frida Cradle Cap kit.
Leave his skin slightly damp while applying skincare products all over.
Wait five minutes before layering Vaseline or Aquaphor over the skincare. At first, we used Aquaphor, but I later learned it contains lanolin, which he may or may not be allergic to. Following the dermatologist's advice, we switched to Vaseline, but we didn’t see much improvement. Eventually, I decided to test Aquaphor again, and he didn’t react badly to it, so we now use it interchangeably.
Use only creams—never lotion. We currently use Vanicream Moisturizing Cream Skin and CeraVe Baby Moisturizing Cream.
Things We Tried That Offered Relief or Showed Improvements
Wet Wraps: Applying wet wraps for 1.5 hours before bedtime helped soothe Phoenix's skin and lock in moisture, reducing inflammation and irritation.
Daily Baths: While it's commonly believed that baths can strip the skin of its natural oils, they can actually be beneficial for those dealing with severe eczema and cradle cap. Regular baths, especially with gentle, soothing products, help cleanse the skin, hydrate it, and reduce inflammation.
Products We Tried and Didn’t Work
Tubby Todd All Over Ointment
Eucerin Baby Eczema Relief Body Creme
Things We Tried and Didn’t Work
Colloidal Oatmeal Baths Phoenix tolerated colloidal oatmeal baths well while we were in the Bay Area. However, after returning home, his skin turned very red following one bath, so we decided to stop using it altogether.
Breast Milk I patch-tested any extra breast milk on his face, but it didn’t produce any noticeable results.
Organic Coconut Oil for Cradle Cap We tried using organic coconut oil to soften and remove the scaly cradle cap. However, as soon as we applied it, Phoenix became uncomfortable and kept turning his head. We decided to stop using it and switched to Vaseline instead, which seemed to work better.
Lifestyle Implementations
Switched Phoenix’s wardrobe to include only cotton, organic cotton, bamboo, and silk fabrics for breathability and comfort.
Added no-scratch sleeve mittens to protect his skin from scratching. We loved his Cozeecoo.
Ensure he’s not overheating, meticulous handwashing
Mama K’s Diet
Slow elimination of dairy, soy, gluten, sugar (In this order)
Completely cut out caffeine, processed food
Added zinc, vitamin d, vitamin c, probiotic, magnesium supplementation
Doctor's Conventional Treatment Plan
Fluocinonide 0.1% Oil: The doctor prescribed applying fluocinonide oil twice daily to Phoenix’s body (but not on his face) for up to two weeks. This treatment showed instant results and significant improvement in his skin. However, once we received approval from the dermatologist to reduce the application from twice daily to once a day, red dot eczema returned with a vengeance. We were advised to use it on Phoenix's face as well, but we chose not to follow this recommendation.
Ketoconazole 2% Shampoo: Prescribed for use on Phoenix's scalp and body 2-3 times a week, but unfortunately, this treatment showed no improvements.
Mupirocin 2% Ointment: The doctor recommended applying mupirocin twice daily to the weeping areas. Despite following the instructions, we saw no improvement in his skin condition.
Note: We consulted with three pediatricians, three pediatric dermatologists, and an allergist. They all explained that eczema is an inflammatory condition that requires anti-inflammatory treatment. While they reassured us that topical steroids are a tried-and-true approach, we expressed our concerns about Jonathan’s history with topical steroid withdrawal (TSW). None of the specialists had experience treating patients with TSW, and each of them had a different perspective on Phoenix’s condition. Even their instructions for applying the steroids varied, which left us feeling even more uncertain about the best course of action.
Phoenix’s Skin Care Journal
Note: I was initially hesitant to share photos of him to protect his privacy. However, seeing photos of others immensely helped me visualize and understand similar experiences while tracking his development. For that reason, I’ve decided to share his photos below.
2 weeks, 5 days old (12/2): Phoenix had his second oatmeal bath with gentle body wash. Zinc oxide was applied to weeping spots afterward.
12 weeks, 5 days old (12/13): A humidifier was placed by his bedside. Tubby Todd lotion was applied and layered with Aquaphor to help soothe his skin.
12 weeks, 6 days old (12/14): Phoenix’s skin was extremely dry, and his eyes appeared swollen.
13 weeks old (12/15): I eliminated dairy and soy from my diet. Tubby Todd lotion was used only on his face, while CeraVe was applied to his body and layered with Vaseline. The weeping spots were left untreated. I also switched the entire household (i.e. detergent, body wash) to fragrance-free products and eliminated using candles.
13 weeks, 1 day old (12/16): I noticed extreme dryness near his ears, head, and legs. I switched to using CeraVe moisturizer, which seemed to calm his skin, and layered Aquaphor on top.
13 weeks, 1 day old (12/16)
The initial stages of Phoenix's severe eczema and seborrheic dermatitis, showing the dry, flaky patches covering his skin. I also noticed extreme dryness behind his ears, lower half of his head, and legs. I switched to using CeraVe moisturizer, which seemed to calm his skin, and layered Aquaphor on top.
13 weeks, 2 days old (12/17): During a road trip to Northern California, his skin developed an odor, and the flakes on his cheeks became larger. I started using ketoconazole 2% shampoo, applying it to his head and body, and soaking him in an oatmeal bath for five minutes. Most flakes were manually removed after softening with a washcloth, and his skin looked much better afterward. We also started his first round of antibiotics for 10 consecutive days.
13 weeks, 6 days old (12/21): Switched back to Tubby Todd lotion and layered it with Aquaphor.
14 weeks, 5 days old (12/24): Phoenix’s skin worsened with weeping spreading from his face and chest to his legs.
15 weeks, 1 day old (12/27): We skipped his shower the night before but resumed daily showers. He woke up extremely flaky, with very dry legs, and his cradle cap appeared worse.
15 weeks, 2 days old (12/28):
Phoenix's skin showing inflamed, red, and oozing patches on his cheek.
15 weeks, 4 days old (12/30): Wet-wrapped Phoenix for an hour, which resulted in noticeable improvement in dryness and the appearance of his legs and body the next day. However, his itchiness remained unchanged.
15 weeks, 5 days old (12/31):
Intense redness and irritation along Phoenix's cheek and jawline, reflecting the unpredictability of eczema flares despite ongoing care. Began applying mupirocin 2% ointment to the weeping areas, with plans to use it for 10 days.
16 weeks old (1/1): After an oatmeal bath, red spots appeared all over his body.
16 weeks, 5 days old (1/3): For the first time, the weeping spots looked significantly better. However, the surrounding areas became very dry.
16 weeks, 6 days old (1/6)
After the first round of steroid application, Phoenix's skin showed some improvement in texture, but the underlying inflammation remained visible. I naively clung to the hope that steroids—the very thing that once nearly derailed his father's life—might somehow be the solution to healing Phoenix. However, the temporary improvement was deceptive. His skin soon began to worsen even further, revealing that these topicals were not the answer we were searching for. Instead, they were merely masking deeper issues that needed to be addressed from within.
17 weeks old (1/7): Saw an immediate effect from the steroid application, with significantly less weeping.
17 weeks, 5 days old (1/12): Phoenix’s eczema on his legs is almost completely gone! However, his head was extremely itchy last night and this morning.
18 weeks old (1/16): I stopped using mupirocin, ketoconazole cream, and antifungal shampoo as they haven’t shown any signs of improvement. I simplified his treatment to hydrocortisone (applied once a day on the face) and layered it with Vaseline. I plan to ease off hydrocortisone slowly since it hasn’t been effective, but I want to avoid a steroid rebound. I also reduced the application of fluocinonide 0.01% oil on his body to once daily. Additionally, I eliminated dairy, soy, and sashimi from his diet.
18 weeks, 3 days old (1/19): Phoenix is finally showing improvements in eating more. However, his weeping worsened significantly, prompting me to reapply mupirocin. Despite this, his face continues to weep, clearly showing it hasn’t worked, so I’ve decided to stop it immediately. Red dots have appeared all over his body, and his eczema has worsened, which I suspected might happen after reducing the fluocinonide oil to once a day. I will continue this reduced treatment approach until we see the dermatologist.
18 weeks, 4 days old (1/20):
This marks the tapering phase of his steroid treatment. We wanted to be extremely cautious of our approach to avoid abruptly stopping the medication. As the treatment is gradually reduced, the redness, weeping and flaking begin to return.
Today, January 21, marks a special milestone for my dragon baby who is officially 4 months old. What a true warrior he is. I can’t conclude this post without expressing my heartfelt gratitude: to the moms who shared their stories online, allowing me to learn from their journeys and find hope in their recoveries; to my husband, who pours love into every meal he cooks so I can nourish our baby without sacrificing flavor; to my aunt, who brings over lunch and drops off food knowing my hands are full; to the friends who reached out to their networks, sharing what worked for their babies; and to my mom, Phoenix's bà ngoại, who is in Thailand visiting every temple to pray and consulting Eastern doctors in search of healing for her grandson.
I strive to live my life through a lens of gratitude. In my search for answers, I’ve come across so many paid courses, expensive homemade balms, and exclusive email marketing campaigns. I made a promise to myself that I wouldn’t hold back what I learn, nor would I try to profit from this journey. While we still have much to uncover and understand, my best friend reminded me of something deeply empowering: if there’s anyone who will figure this out for my baby, it’s going to be his mom.
One day, when Phoenix is old enough, I’ll share with him the story of his first triumph. As parents, the way we face challenges, the care we give to those we love, and the grace we show ourselves during life’s toughest moments lay the groundwork for resilience, strength, and love that our children will carry with them.
With Love,
Mama K
