By Christina Martin, as told to Batya Swift Yasgur, MA, LSW
Christina Martin lives in Southern California. She is the mother of three children, ages 3, 5, and 7, and works in student services. Her 5-year-old son has atopic dermatitis.
Our journey started minutes after our little boy was born. I was happily holding our new baby when the pediatrician pointed out that he had some type of rash on his cheeks. My husband and I weren’t worried at first. We were second-time parents and remembered our first baby having cradle cap and baby acne. “No problem,” we thought. “This will pass.”
But we were wrong. It got much worse. When our son was 6 weeks old – literally overnight –the “cradle cap” spread all the way down from his face to his chest and he was covered with an intense, oozing, scaly rash. It was scary to see. It looked like the cradle cap had crawled down his body.
We took him to an urgent care center right away, but the doctor didn’t offer any diagnosis. He prescribed a topical steroid cream and encouraged me to follow up with the primary care doctor. The cream helped to reduce the rash, although it didn’t clear it up completely. The pediatrician said, “It might be atopic dermatitis, also called eczema, but I’m not sure. You need to see a dermatologist.” We got a referral and made an appointment for a few weeks down the road.
About a week later, my son finished the prescribed steroid cream. The next day, the scaly rash returned and was even worse than it had been the first time. Now, he was covered from head to toe with deep, oozing, yellow scales, and he was in terrible discomfort. Of course, he couldn’t sleep, which also meant that we couldn’t get any sleep.
We got a same-day appointment with the pediatrician, who prescribed stronger topical steroids as well as an antibiotic and an antihistamine to help with the itching. Since there were so many open sores, we were all worried about possible infection, so the pediatrician expedited the dermatology referral and referred us to an allergist.
Finally, a Diagnosis
Within a week, we were in the dermatologist’s office. By that point, you could barely see a baby underneath all those scales. It was at that appointment when we finally received the official diagnosis: severe atopic dermatitis.
The dermatologist switched our son to an oral steroid that was pretty strong. He also got a different antihistamine that was much stronger. In addition, we got a ton of topical steroids, including a compound that the dermatologist taught us how to mix. She was concerned about applying some of the stronger topical steroids directly. Mixing it with petroleum jelly diluted it, and she felt that would be safer.
We had been told that eczema, allergies, and asthma tend to go together and are part of the same “family” of conditions, so in addition to the dermatologist, we consulted a pediatric allergist and a pediatric pulmonologist. Fortunately, our son didn’t have asthma or any other lung problems.
We met with the allergy team every 3 months or so, and the allergist worked together with the dermatologist. Our son was tested for a range of environmental and food allergies. It turned out that he was allergic to dairy, so we had to change the formula he was drinking to one that didn’t contain dairy. We were very relieved to discover that he wasn’t allergic to our pets.
Our Ongoing Struggle
I wish we could say that all of these things solved the problem, but unfortunately, they didn’t, even though he was in somewhat better shape than he had been.
I think that, even though the dermatologist was used to seeing young kids, she wasn’t used to seeing such a severe case, and I don’t think she was aggressive enough in treating it. The attitude was, “a lot of kids outgrow it.” That’s what we were hoping for and relying on, but we weren’t seeing any signs of that.
We got to a place where we were sort of managing, but the impact of his atopic dermatitis was really intense. By this time, he was 2 years old. He had never slept through the night.
Although he was no longer covered from head to toe with scales, the atopic dermatitis had concentrated itself into specific problem areas, like his hands, the tops of his feet, sometimes the folds of his knees and elbows. His skin had become quite leathery in those areas. The itching was so intense that once he grew teeth, he’d start biting those areas. In fact, his first word was “itch.”
We kept pushing back with the dermatologist and saying, “There has to be something else we can do.” But she didn’t have any other recommendations. And honestly, I don’t think she understood what we were going through.
Helplessness and a sense of inadequacy are very painful and traumatic feelings for a mother to have. It felt awful to be unable to help my baby or know what he needed, to watch him suffer with itching and pain and be powerless to fix it. I felt I was failing my baby.
I also was overcome with guilt because I felt I was failing my older daughter as well, since my son sucked up so much of my time and attention. Even though my brain told me it wasn’t my fault, in my heart I felt like an inadequate mother.
Atopic Dermatitis Impacts the Whole Family
Eczema doesn’t just affect the child who has it. It affects the whole family. The first major impact was on everybody’s mental health. It can place enormous strain on a marriage. That was certainly the case with us, and it’s been a really tough journey. Even when our son started improving, that didn’t automatically translate into improvement in the marriage or family relationships.
And there was also a sense of not being understood and being invalidated by many people who would say, “Oh, it’s just a rash.” Even with some of our family members, there was this type of misunderstanding. Unless people have personally witnessed night after night of a child’s itching and pain, there’s no way to understand what’s going on. And most people can’t wrap their minds around the fact that sleep deprivation, which is normal in parents of a newborn, continued for over 2 years for us.
All of the focus on my son also took a toll on my older daughter. I finally realized we needed to bring her into the process of comforting him. In fact, that was the only way to reduce her resentment. It helped, but of course it didn’t solve the problem of how much time and attention her brother was getting.
I started going on the internet, finding community resources and online support groups, including a wonderful organization called Global Parents for Eczema Research (GPER). I got in touch that way with other parents who were going through the same thing.
Real Help at Last
One day, I vented to the pediatrician, who told me that there were stronger medications out there and my son was likely old enough to try them. We got a referral to a different dermatologist, and it was an amazing experience. We cried throughout the whole first appointment. We felt really heard, really validated.
The dermatologist said to us, “I don’t want your son to miss out on normal childhood experiences because of atopic dermatitis. We’ll keep trying until we find what works for him.”
He was great at prescribing different classes of steroids and other types of medications, and at sitting us down and laying out a plan after explaining all the possible protocols. We finally felt we were included, like we were all part of the same team to help our son. We finally felt that our son’s needs – as well as our needs as parents – were being recognized. We’ve been using the same dermatologist since then.
My son was switched from topical steroids back to oral steroids, and he also received other stronger topical medications as well as antihistamines. Eventually, during the first 6 months of working with the new treatment plan, our little boy slept through the night for the very first time in his life!
It felt miraculous to see the changes. We saw a reduction in itching. We watched his hands soften over the next 6 months, which was amazing. It was amazing to watch him sleep without waking up to scratch. And the healing his body was doing as he began to get enough sleep was wonderful.
Today, at the age of 5, my son sleeps well most of the time. Sure, he has flare-ups, but they’re manageable and rarely become a problem unless he’s fighting off a cold or virus.
Now that his eczema is so much more under control, he’s able to go to school. When he was very little, finding folks who could take care of him was next to impossible. At the age of 4, he started preschool. We trusted the teacher to apply his meds as needed. Although I’ll admit that I was nervous sending him off to school, I knew it was best for him, and for us, and that he was ready for it.
Advice for Parents of Children With Atopic Dermatitis
I’m happy to share my experience with other parents who have children with this condition. This type of candid discussion would have been very helpful to me as I was going through the worst of it. When I discovered parent support forums, I found them valuable.
My advice to other parents is to reach out for support from GPER and similar organizations. Don’t go through this experience alone. Also, recognize that your child’s illness can put a huge strain on your marriage and relationships, so see if it’s possible for you to get help, both individually and as a couple. And try, if possible, to give space and focus to your other child or children, if you have any. I know how challenging that can be, so don’t beat yourself up if it’s not possible.
This brings me to another point. It’s natural for parents to feel guilty and helpless when they see their beloved child suffering. But as much as you can, try not to blame yourself. It’s not your fault that your child has this illness. Your guilt will be destructive to your own mental health and well-being, and it certainly won’t help your child.
Lastly, advocate for your child. Don’t take “no” for an answer. If you’re not satisfied with your doctor’s approach, don’t be shy about finding another doctor. You should feel like a valued team member in your child’s care, and you should feel that your concerns are heard and being addressed.
