With support from Regeneron and Sanofi, Scary Mommy contributor Christa Lee spoke with Janelle, mom to 6-year-old Josiah, about her child’s experience with moderate-to-severe eczema. She opened up about her family's journey and how a novel approach helped them find relief. This is their story.
It started as a mild rash on my son, Josiah's, face as an infant. We had no idea how tough the road ahead of us would be.
I didn’t know much about the different care elements of eczema (also known as atopic dermatitis) when Josiah was first diagnosed with the disease. While I felt like I had the support of a really good pediatric dermatologist and a healthcare team that taught me how to keep his symptoms under control, I had to do a lot of my own research online and read mommy blogs because I didn’t have other people in my life who were dealing with this first-hand with their kids.
Over time, I learned that Josiah's eczema wasn't "just" a skin condition—it is a chronic inflammatory skin disease that can result in part from an overactive immune system, which can lead to itching and rashes. At the height of the eczema, he had flare-ups on his hand. I was afraid that his symptoms could get in the way of him doing the things he loves and impact his ability to participate in typical children’s activities.
Fast forward six years, and it’s so fulfilling to see him as the active, vivacious kid I know him to be. He’s a blue belt in taekwondo, and loves to play guitar like his dad. I now feel like an expert on eczema, but it took time to get there.
At first, when Josiah was 2-months-old, we noticed a rash on his face that the doctors believed to be due to baby acne. Then, when the rash spread to his arms, they chalked it up to a dairy allergy, which is a common condition that can present with bumps or pimples. So, we went through the motions of changing his formula to a milk-free version, and his skin was still itchy and dry. Something in my “Mom gut” told me it was more serious than that.
Thinking about this time of my life is difficult. I was a first-time mom with a young baby who obviously couldn’t tell me what was wrong, but I knew he was uncomfortable. When he was between 3 and 6 months old, he would scratch his skin so badly it would bleed. I had to bandage his entire arms to protect them. These were his toughest points, with the open wounds. When his skin would peel, it would become so sensitive to the point where he would try to get out of taking a bath. As a mom, that really hurt to see.
People had all sorts of advice and would constantly ask me questions like: “Are you moisturizing him enough?” If only they could see that it felt like we’d tried every over-the-counter skin-care product under the sun.
Eventually, I learned my parent’s intuition was right — it wasn’t simply dry skin, allergies or acne, like previous doctors considered, but it was actually moderate-to-severe eczema. With his doctor’s advice, we tried many topical prescription options that ended up not being right for Josiah. Over the next couple of years, as tough as it was seeing him deal with recurring signs and symptoms, it was manageable compared to what happened next.
Unfortunately, Josiah's eczema was especially bad when he was 3-years-old — there were times when we took him to the ER. His skin started to peel, and later began to ooze — a condition the doctors described as “weeping skin.” His skin issues looked different than your textbook definition, given skin conditions can present themselves differently on Black skin. Our dermatologist at the time thought it was possibly an allergy. I advocated for my son to receive more testing, and it was then we learned it was a staph infection due to complications from his eczema. That was a low point for me, and what made me realize we needed to take serious action.
When our previous doctor suggested Josiah try Dupixent® (dupilumab), I was nervous but optimistic. Dupixent is a prescription medicine used to treat adults and children 6 months of age and older with moderate-to-severe eczema that is not well controlled with prescription therapies used on the skin (topical), or who cannot use topical therapies. People shouldn't use Dupixent if they are allergic to it or its ingredients. Serious side effects include allergic reactions that can sometimes be severe, eye problems and joint aches and pain. Please see Important Safety Information below.
I learned that Dupixent is a biologic that is given by injection under the skin. It works by targeting a key source of inflammation under the skin, to help reduce itch and skin lesions.
I’ll be honest, Josiah didn't exactly welcome the shot in the beginning— what kid does? However, the nurses taught me different methods to help keep him still and make the process smoother for us. These sessions have become a part of our routine, and he can sit still for it now. He’s always been a curious boy and appreciated when he was told what was happening rather than us trying to distract him. We’d tell him, “We’re cleaning your skin now, we’re preparing for your shot.” It’s letting him know and be part of the process. When he needs to take a breath, we let him have the space to do that.
He eventually got used to the shots – Dupixent was helping him toward relief for his skin.
After starting on Dupixent, we saw a major difference in Josiah’s skin. His rashes were clearing up and he wasn’t itching as much. I could breathe a sigh of relief. In a clinical trial of children 6 months to 5 years of age, at 16 weeks: 28% on Dupixent plus a topical corticosteroid (TCS) saw clear or almost clear skin compared with 4% on TCS only, and 48% of children on Dupixent plus TCS had less itch compared with 9% on TCS only.
The most common side effects include injection site reactions, eye and eyelid inflammation, including redness, swelling, and itching, sometimes with blurred vision, cold sores in your mouth or on your lips, and high count of a certain white blood cell (eosinophilia).
For other parents with children experiencing moderate-to-severe eczema, I learned no two eczema cases are the same. This was just our experience, and it’s always important to consult with your healthcare provider about what is right for you or your child. But, looking back, it was a really rough road for us dealing with his eczema. If your child is suffering from moderate-to-severe eczema that is not under control, talk to your doctor about options, including Dupixent, to see if it's worth exploring.
To learn more about Dupixent (dupilumab) and access the full Prescribing Information, visit www.Dupixent.com/AtopicDermatitis/.
IMPORTANT SAFETY INFORMATION & INDICATION
Do not use if you are allergic to dupilumab or to any of the ingredients in DUPIXENT®.
Before using DUPIXENT, tell your healthcare provider about all your medical conditions, including if you:
- have eye problems.
- have a parasitic (helminth) infection.
- are scheduled to receive any vaccinations. You should not receive a “live vaccine” right before and during treatment with DUPIXENT.
- are pregnant or plan to become pregnant. It is not known whether DUPIXENT will harm your unborn baby.
- A pregnancy registry for women who take DUPIXENT during pregnancy collects information about the health of you and your baby. To enroll or get more information call 1-877-311-8972 or go to https://mothertobaby.org/ongoing-study/dupixent/.
- are breastfeeding or plan to breastfeed. It is not known whether DUPIXENT passes into your breast milk.
Tell your healthcare provider about all the medicines you take, including prescription and over-the- counter medicines, vitamins, and herbal supplements.
Especially tell your healthcare provider if you are taking oral, topical or inhaled corticosteroid medicines or if you have atopic dermatitis and asthma and use an asthma medicine. Do not change or stop your corticosteroid medicine or other asthma medicine without talking to your healthcare provider. This may cause other symptoms that were controlled by the corticosteroid medicine or other asthma medicine to come back.
DUPIXENT can cause serious side effects, including:
- Allergic reactions. DUPIXENT can cause allergic reactions that can sometimes be severe. Stop using DUPIXENT and tell your healthcare provider or get emergency help right away if you get any of the following signs or symptoms: breathing problems or wheezing, swelling of the face, lips, mouth, tongue, or throat, fainting, dizziness, feeling lightheaded, fast pulse, fever, hives, joint pain, general ill feeling, itching, skin rash, swollen lymph nodes, nausea or vomiting, or cramps in your stomach-area.
- Eye problems. Tell your healthcare provider if you have any new or worsening eye problems, including eye pain or changes in vision, such as blurred vision. Your healthcare provider may send you to an ophthalmologist for an eye exam if needed.
- Joint aches and pain. Some people who use DUPIXENT have had trouble walking or moving due to their joint symptoms, and in some cases needed to be hospitalized. Tell your healthcare provider about any new or worsening joint symptoms. Your healthcare provider may stop DUPIXENT if you develop joint symptoms.
The most common side effects in patients with eczema include injection site reactions, eye and eyelid inflammation, including redness, swelling, and itching, sometimes with blurred vision, cold sores in your mouth or on your lips, and high count of a certain white blood cell (eosinophilia).
Tell your healthcare provider if you have any side effect that bothers you or that does not go away. These are not all the possible side effects of DUPIXENT. Call your doctor for medical advice about side effects. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088.
Use DUPIXENT exactly as prescribed by your healthcare provider. It’s an injection given under the skin (subcutaneous injection). Your healthcare provider will decide if you or your caregiver can inject DUPIXENT. Do not try to prepare and inject DUPIXENT until you or your caregiver have been trained by your healthcare provider. In children 12 years of age and older, it’s recommended DUPIXENT be administered by or under supervision of an adult. In children 6 months to less than 12 years of age, DUPIXENT should be given by a caregiver.
DUPIXENT is a prescription medicine used to treat adults and children 6 months of age and older with moderate-to-severe eczema (atopic dermatitis or AD) that is not well controlled with prescription therapies used on the skin (topical), or who cannot use topical therapies. DUPIXENT can be used with or without topical corticosteroids. It is not known if DUPIXENT is safe and effective in children with atopic dermatitis under 6 months of age.