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: Aug 1, 2017
Last Updated On: Aug 1, 2017
Soon after I started working in the Boston Children’s Hospital Atopic Dermatitis Center, I was struck by two things: the incredible impact that eczema has on quality of life and the incredible resilience and strength of the children and families I encountered.
What do we know about eczema? We know it is a chronic condition. As of now there’s no magic pill or cure for it, and managing it takes a lot of work. But there are things we can do to make it a little easier for your child and improve quality of life for the whole family.
In quality of life studies about eczema, itch is usually the ﬁrst thing to be mentioned.
When I talk with families about coping with itch, I suggest taking a non-blaming team approach. Sometimes the language we use can make a difference.
People with eczema are used to hearing, “don’t scratch,” which makes it seem like the person with eczema is doing something wrong, and can make children feel ashamed. Instead, consider saying something like, “Your eczema is bothering you. What can we do?” When we focus on what children can do instead of what they’re not supposed to be doing, it can increase their sense of control and their self-esteem, and helps them know that they’re taking steps to feel better.
Increasing awareness what triggers your child’s is important. I talk to kids about being detectives or scientists looking for data and clues about what leads to scratching.
We often talk about environmental triggers or foods, but there are others. Itch triggers can include things like exposed skin. For babies, it might be diaper changes. For older children, sometimes it’s when they’re in the bath or right after the bath.
Stressful situations are another itch trigger, as are mindless or sedentary activities when hands are free (as when watching TV or talking on phones).
Bedtime can also be a big challenge. That’s a time when you don’t have a lot of other things to focus on except the itch.
Once you know your child’s itch triggers, you can use some of the following coping strategies to help reduce scratching.
One of the simplest ways help your child manage itch is to physically block scratching. Have your child wear long clothing or tights. Some people use cotton wristbands (without latex elastic).
For nighttime, sleep suits, gloves or arm sleeves are helpful to block scratching. Some wrap treatments can be helpful too. In addition to moisturizing the skin, wet wraps can provide a bit of a barrier to scratching.
Distraction works! We see less scratching when children (or adults) with eczema are actively engaged in an activity. This is especially true when their hands are kept busy.
For babies, special toys used only during diaper changes are helpful. For older children, bath toys can keep hands busy. Some children also play tic-tac-toe with bath crayons on the side of the tub.
Handheld video games can be useful for long car rides or waiting in the doctor’s office. Other distractions include creative projects like drawing, painting, or making a collage; playing with Legos, blocks, or pop-up books; or singing songs with hand gestures.
Sometimes a change of scenery is useful. It can also help to make something difficult into a game. For example, if your child scratches when they get out of the bath, use a timer to see how fast can they do their creams and clothing on? The focus on the game may distract from the itch.
Similar to distraction is the idea of “competing responses.” Competing responses are simply replacing a behavior you don’t want with another behavior.
In studies of adults with eczema, when they had an urge to scratch, they were taught to do something like take their hand and ﬁrmly place it on their leg or make a ﬁst.
I take the idea of competing responses and combine it with keeping children’s hands busy doing something else. For sedentary activities like watching TV, I suggest keeping a coping bucket nearby. Inside the bucket you might place a stress ball to squeeze, a smooth stone to rub, or a tube of moisturizer to apply. For children who do a lot of picking at their skin, you might have a foam ball that they can pick pieces off of.
Instead of waiting for the urge to scratch, have your child keep their hands busy proactively in their “trigger” situations. For example, they could knit while watching television or make friendship bracelets in the car. Playing a musical instrument can also help. Some people have found that the rhythmic movements that go with guitar playing or knitting can be almost hypnotic, directing focus away from itch.
You can initiate soothing competing sensory experiences when your child wants to scratch. For a lot of people, a cool shower, a cool washcloth or an ice pack can reduce itch. The idea is that we are trying to block the itchy messages going to the brain with other messages, like the cool sensation of the ice pack.
Guided imagery is like taking a trip in your mind only. Pleasurable imagery works well to get people to a focused state. People stereotypically picture a beach scene. That may or may not be good for some people with eczema if the sand is irritating or the sun is hot, but teenagers often like it a lot. If you imagine walking on the beach, you can feel a cool breeze on your skin, hear a seagull in the distance, see waves crashing on the shore, in and out, in and out, and taste the salt from the sea on your lips. The concept is that you start to feel as if you were there.
I have found that imagining being up in a spaceship works well for some children. They have the feeling of weightlessness, can view the earth below them, and look at the cool control panel in front of them. Keeping the image engaging is important!
Restorative imagery also works well for some people. For example, if your child’s eczema feels really hot and burning, they might imagine the look and feel of cool water washing down the skin and melting away those red patches. Focus on whatever image soothes your child.
We know there’s a link between eczema flares and stress. Relaxation techniques help reduce the physiological effects of stress by loosening muscles, deepening breaths and decreasing heart rate. In addition to guided imagery, common relaxation techniques include deep or relaxed breathing (taking slow, even breaths in through the nose and out through the mouth), and progressive muscle relaxation (tensing and then relaxing different muscle groups throughout the body).
There are a lot relaxation resources for children and adults, like CDs or apps, that you can purchase.
Relaxation techniques can be helpful for settling children in to sleep, and if they wake up in the middle of the night. Try to avoid the use of TVs, computers, and other electronics right before bed or during the night. And try to avoid late afternoon naps (although naps are tempting because children often sleep poorly due to their eczema and then by afternoon they’re zonked!).
Practice a relaxing and consistent bedtime routine. It is also a good idea to use your child’s bed only for sleeping. If they do homework or other work on it, then it can become associated with being awake or with stress.
Talking to a pediatrician or a psychologist or sleep specialist may be helpful if learned sleep patterns are preventing good sleep.
Put together all that you’ve learned about what’s effective to control your child’s eczema when you plan for school. Make sure moisturizers and medications are available — and possibly something like a stress ball or smooth stone that can be used discretely to occupy your child’s hands.
Some children keep a brief relaxation exercise or CD at the nurse’s office, and listening to it for 5 or 10 minutes can be helpful.
Many children don’t want to make a big deal about their eczema and go to the nurse if they’re feeling itchy. This is understandable. Some parents develop a secret signal that their child can use to let the teacher know they’re itchy or uncomfortable, or that the teacher can use to ask the child if they feel like they need to put on some moisturizer.
It’s really important to educate others at the school about your child’s condition. You know a lot about managing eczema, but others may not. Make sure school teachers and staff understand what eczema is and how it affects your child. For example, they may not realize how eczema can affect your child’s concentration. Share what works when your child is itchy.
Consider teaching your child’s peers about eczema, especially when they are young. Young children want to help. They’re curious and a little education about eczema can go a long way. Some parent’s bring a book or brochure to school, sometimes a parent speaks, and some have the school nurse or teacher address the classroom. It is important to check in with your child and ﬁnd an approach that is comfortable for them.
You can work with the school to develop an individual health plan or 504 plan. The goal of a 504 plan, which comes from the Americans With Disabilities Act and the Federal Rehabilitation Act of 1973, is to make certain that a child with a disability has access to an appropriate education and can reach the same goals as peers. Each 504 plan is individual to a student and puts supportive modiﬁcations in place (for example, perhaps a laptop is made available for tests if a child can’t hold a pencil due to eczema).
Children don’t have to tell everyone about their eczema, but sometimes people will ask about it. When children are prepared and have something to say, they do better.
Sometimes children say, “It’s nothing,” or “It’s not a big deal,” when they don’t want to share, and that’s understandable. But if their peers perceive some secrecy, it often just draws more questions.
It can be helpful to have some simple matter-of-fact language. Give the condition a name, and keep it simple. Some children say, “It’s eczema and it is dry, itchy skin.” And some say, “It’s like an allergy and you can’t catch it,” since contagion can be a big concern. You want the child to set the tone that they are not ashamed by their eczema as peers may pick up on this. It often helps to role-play some responses so your child feels more prepared.
Sometimes the most important thing a parent can do is listen. There are not a lot of good responses when children say “I hate this!” or “Why me?” As parents, we all want to rush in with a good answer, but often it’s most helpful to ﬁrst really listen and to let your child know that you understand.
At the same time, help your child realize there’s more to them than just eczema. Get them involved in activities that improve their self-esteem. And think about what you say to them. Are your conversations often about eczema or do you spend just as much time talking about the fact that they’re a great T-ball player or they’re learning to read? Think about the coping styles that you’re modeling.
Actively involving your child in their own care can help them feel more in control and build self-management skills. Young children often want to do things themselves and be in control. Look for fun ways to involve them in their skin care, and give them choices.
Older children and teens can do more on their own. They gain self-esteem from taking care of things, but they still need parental structure and support, so sometimes there can be some battles around skin care. It can help to involve children in solving problems. For instance, if there’s a lot of procrastination around baths at bedtime, ask your child for a solution. For example, ask them if after dinner be a better time for a bath?
With older children, it can also help to frame skin care in terms of their goals, and how sticking to a skin care routine could help. Some children like to keep a journal, like a detective notebook or a science log, looking at changes in their skin and tracking progress. It can be motivating for them to see that their actions actually can make a difference.
Reward programs can also keep children motivated, but a reward’s effectiveness sometimes wears off. So rewards are often best used for an immediate short-term goal.
Moisturizers sometimes sting. Perhaps your child had a bad experience when they’ve had open skin and they’ve experienced this sting, and now they get anxious about putting on their moisturizer, or they just refuse to do it.
The goal is to overcome treatment anxiety and make moisturizing fun for children. Here are some ideas:
Some children really hate the goopy, sticky feeling of putting on their pajamas or clothes after moisturizing. You might have a special robe for them to wear while the moisturizer is soaking in.
Teenagers might want to work with a medical provider to ﬁnd the products that work best for them, like a lighter moisturizer for the face.
Baths also can sting and be cause for anxiety. Explain to your child why taking baths is necessary. You might say, “Our skin is thirsty and during a bath it’s taking a drink, and then our moisturizer is sealing it in.”
Sometimes something seemingly goofy can work. A lot of the children in our clinic take baths with their clothes on. It sounds crazy, but some people say it reduces stinging. I think it also reduces anxiety because it’s just so silly. We often share this idea with children in front of the parents and suggest the parents try it too.
At times just wearing a bathing suit, or bathing in a kiddie pool can work. When your child is in a kiddie pool it’s not a bath, it’s swimming and it’s fun. Teenagers sometimes like to make the bath their spa time and listen to some music.
You can get creative with other treatments, too. You might also pretend that wet wraps and wet pajamas are a mermaid’s tail or a ﬁsh’s ﬁn. Children who wear tights to block scratching might turn these into “superhero tights,” and gloves can be “princess gloves.”
Siblings of children with eczema can sometimes get short shrift in terms of a parent’s time and attention. It’s okay for them to feel jealous, even though they’d never want to have eczema. It is important to thank these siblings for their support and ﬁnd ways to involve them too. They may see their sibling struggle or cry, and they may be worried or upset about what’s happening. Be sure to explain eczema to them, too.
Jennifer LeBovidge, Ph.D., is a psychologist in the Atopic Dermatitis Center at Boston Children’s Hospital and a Clinical Instructor in Psychology at Harvard Medical School, specializing in pediatric psychology. Dr. LeBovidge provides psychological consultation and support to children with eczema and food allergies, and to their families.