It's been one year since NEA, in collaboration with four peer patient advocacy organizations, hosted the landmark patient-focused drug development (PFDD) meeting dedicated to eczema.
Published On: Sep 19, 2017
Last Updated On: Sep 19, 2017
Caring for a baby with eczema can take a toll on the whole family. It can be very difficult if you live as a “nuclear family” (which is an old-fashioned term use to describe a family of two married parents of opposite genders and their biological or adopted children).
I was a stay-at-home mom during the first year of my daughter’s life, which mean I spent the entire day alone with her. That was the toughest period of my life! Surely any parent who has cared for an eczema baby has their own unique story.
Looking back, I have done some things right, but I could have made it easier for myself in other areas. Based on my lessons learned, I’ve come up with eight survival tips for other parents of eczema babies.
Sometimes eczema consumes so much of us that we forget that both the baby and our basic needs have to be taken care of. You can try to reduce time spent or be more flexible in some areas such as:
1. Feed smart.
In my opinion, breastmilk remains the best nutrition for babies in their first year of age. However, breastfeeding may not be smooth for every mother. Since the first few days were critical for breastfeeding success, I ought to have booked a lactation consultant and purchased a double electric breast pump from the start.
2. Secure the baby’s hands.
Just within a few minutes of being left alone, my daughter would have scratched herself till she bled. When the itch was so strong, she would pull off the mittens or rub her skin against fabric or other surfaces. I used cloth to secure my daughter’s hands for a few minutes (for me to go to the bathroom or prepare milk or dinner), and though it seemed cruel, it was an effective way to keep my daughter from scratching. I should have explored other mittens that would not be so easily pulled off!
3. Do less washing and cooking.
I was glad that I used disposable diapers for my daughter. Online food delivery wasn’t so common then, but with numerous online food delivery options available today, I would definitely suggest ordering take-out sometimes instead of worrying about cooking and washing dishes.
Parents of newborns rarely get enough sleep, but that is even more the case for parents who are caring for babies with eczema. I’d get only a few hours (sometimes even less than one hour) of sleep before waking up to my baby crying. At times, it seemed like dawn was almost a relief.
4. It’s partly in the mind.
Putting aside the practical aspects of bedtime, part of the frustration I felt was how impossible it was to get a full night’s rest. However, once I changed my expectations and began to accept that sleep would be interrupted, getting a few hours of sleep in aggregate was considered a good night. That made coping with eczema at night much easier. After all, some sleep is better than no sleep!
5. Stay cool – literally.
Keeping cool during the nighttime was important, especially because we lived in Singapore, which has a tropical climate. Showers were taken close to bedtime, and the room was air-conditioned with a humidifier to prevent the air from becoming too dry and aggravated the skin. We co-slept with the baby as we found it helpful to know when my daughter was scratching. That way, we could immediately stop her from scratching and quickly soothe her back to sleep.
6. Don’t be afraid to start over.
Sometimes the itch and scratching was so intense that it was impossible to continue to sleep. We found it more effective to re-start the bedtime routine rather than insist that our daughter fall back asleep (which was impossible anyway!) With a fresh change of clothes and a quick wipe with cool water, followed by moisturizing, we could manage a few more hours of sleep.
7. Look at quality of life, not quality of skin.
Every day with your child becomes more valuable when you start thinking in “quality of life” terms as opposed to focusing only on the status of their skin. Even on days when her eczema flared, we still took time out of the day to enjoy quality time with our daughter, such as visiting the library and reading some books.
8. Put the ‘care’ in skincare.
I always make sure to keep my daughter’s skin moisturized using a hypoallergenic moisturizer. We found it helpful to try dry wrap and wet wraps. Finding the right treatment was very important. We were so glad to see our daughter’s eczema improve after we consulted with a specialist. For topical corticosteroid usage, we used the medication as directed, ensuring that it was of appropriate potency, frequency, duration, quantity and for the right skin area. Getting an allergy test to figure out eczema triggers was helpful too.
Last but not least, don’t be afraid to ask for support from your spouse. Remember that as a couple, you are going through this together. You can’t let blame or resentment fester. Stay strong in the marriage, and don’t let eczema define the family!
Mei is the mother of Marcie (aka MarcieMom), who’s had eczema from two weeks old. Since Marcie’s eczema has improved from about one year of age, Mei has started an eczema blog for parents “EczemaBlues,” co-authored a book “Living with Eczema: Mom Asks, Doc Answers” and illustrated a children book “A to Z Animals are not Scratching!”