Raising a kid who thrives with psoriasis

| Brooke N. Bates

When her son started kindergarten, Jaime Moy was nervous. Andy Moy, now 18, had been diagnosed with psoriasis the previous year, and just before school began, his psoriasis was flaring. It was a hot summer day and they were going to meet his teacher. She wanted to dress him in jeans and long sleeves, in part because she wasn’t sure how people would react.

“I didn’t want him to be self-conscious, but I was trying to protect him,” she said. “He was not having any of that. He said, ‘No, I’m wearing a T-shirt, shorts and sandals. Let’s go.’ ”

When kids asked about his skin, Andy explained what psoriasis is and that they couldn’t catch it. Growing up with a visible disease wasn’t easy, but his mom said he never tried to hide it. “Ever since he’s been little, it’s just been part of who he is,” said Jaime Moy, who was diagnosed with psoriasis and psoriatic arthritis (PsA) three years after her son.

Living with psoriasis is difficult enough for adults, but watching a child grow up with it can make a parent feel powerless. Pediatric psoriasis carries dynamic challenges that affect children physically, socially and emotionally, impacting their quality of life

“In childhood and adolescence, there’s so much interpersonal development, and a lot of stress related to self-image, even if you don’t have psoriasis,” said Lawrence F. Eichenfield, M.D., chief of pediatric and adolescent dermatology and vice chair of the Department of Dermatology at the University of California, San Diego, and Rady Children’s Hospital.

Helping a child overcome psoriatic disease at any age requires a combination of education, effective treatment and empowerment, enabling them to take an active role in managing their care and advocating for psoriatic disease.

Talking about psoriasis

Psoriasis can appear at any age. About one-third of people with the disease see it manifest before age 20. For parents or caretakers who aren’t familiar with psoriasis, the initial challenge is explaining the complicated condition to a child.

“First and foremost, find a good dermatologist,” said Kelly M. Cordoro, M.D., associate professor of clinical dermatology and pediatrics at the University of California, San Francisco. “Get kids the care and information they need.”

Teyaka Booker and her husband started researching psoriasis two years ago when their oldest son, TJ, was diagnosed at age 7. In addition to information from their doctors and NPF, the Bookers turned to the online psoriasis community, where they found a creative way to explain TJ’s condition.

“We told him that his immune system is running like a race car, while everybody else has a normal car. He’s reproducing skin cells every three or four days, when everybody else takes a month,” Teyaka said.

Cordoro recommends role-playing with children so they can practice a three-step response — simplified for other kids — when asked about their skin.

Educate: “This is psoriasis. It’s a skin disease.”
Normalize: “It itches sometimes like bug bites, but it’s not contagious.”
Distract: “Do you want to go shoot hoops now?”

“One of the most powerful things kids can do is educate their peers, because most of the time, kids just want to know. They’re curious about differences,” Cordoro said. “If they have the confidence to tell their peers about psoriasis, then they’re able to move past it.”

Fighting a visible stigma

TJ is usually an active, outgoing 9 year old, but his mother noticed personality changes during his flares. “He’s very conscious about his body when he has outbreaks,” she said. “He becomes an introvert and doesn’t want to answer questions about why his skin looks different.”

Children may feel embarrassed or self-conscious about psoriasis, especially if it’s difficult to cover. A notable difference between psoriasis in kids and adults is that, in children, it more commonly involves the face. About half of children with psoriasis have it on their face, said Amy S. Paller, M.S., M.D., chair of the Department of Dermatology at Northwestern University Feinberg School of Medicine. “Whether it’s internal stigma, the way you as an individual feel the world is looking at you, or external, the way the world actually relates with you — which can certainly change with a highly visible disorder like psoriasis — children can have all kinds of issues with social development,” she said.

Regardless of how visible a child’s psoriasis is or how much of the skin is covered, it’s important to let children express how they feel about their psoriasis. Cordoro said the “cutaneous body image,” a person’s perception of his skin, can be a helpful measure of a child’s psychosocial health.

She references a study published in 2004 in the Journal of Investigative Dermatology to broach cutaneous body image. “Ask, ‘How do you feel about the appearance of your skin, on a scale of one to 10?’ This validates a patient’s concerns about his appearance, without thinking it’s just vanity. As teenagers are developing identity and self-esteem, it’s important that doctors address that.”


TJ with mom and siblings.

Dealing with bullies

Make sure children always know who they can talk to at school if they’re not feeling well or are being teased. Andy Moy said kids teased him in middle school, and while talking to a teacher helped briefly, he ultimately had to learn to move on without letting bullies affect his self-esteem.

“Surround yourself with friends who accept and support who you are, and ignore the ones who want to bring you down because of your psoriasis,” he said.

Paller recommends parents and guardians reach out to teachers and administrators to explain each child’s situation and request special accommodations in advance of the school year, striking a balance between making accommodations and not making the child feel singled out, offering them in a way that doesn’t embarrass the child. For Moy, special accommodations included leaving class early for lunch, as it took him longer than other students to walk across the building, and time extensions on tests, because it took him longer to write.

This year, when the Bookers told TJ’s third-grade teacher about his psoriasis, she revealed that she has it, too. She included TJ in her presentation to the class at the beginning of the year to show students what an outbreak looks like.

Taking an active role in care

TJ applies Vanicream in the morning and before bedtime. During the day, he has a pencil box full of lotions in his classroom. “He’s aware of his medicines, what he’s supposed to take, when he’s supposed to take it and how he’s supposed to do it,” said Teyaka, who keeps a detailed notebook documenting his medications for when he stays with grandma. “We want him to have a routine for an outbreak and to automatically know what to do, because psoriasis will be with him forever.”

Each individual’s maturity level will determine when and how he gets involved in his care, but a child can generally start participating in his treatment between ages 6 and 8. One way to empower a kid is to let him feel the difference between a cream and an ointment, and then pick his preference.

“Shared decision-making is an important aspect of managing pediatric psoriasis, where we choose a treatment together after discussing with the family,” said Cordoro, who co-chaired the Pediatric Dermatology Research Alliance. “If a medication is not getting used, it’s not going to work no matter what it is. Compliance is certainly better when the child is involved.”

Andy Moy, for instance, knew his methotrexate shots had to happen on Friday nights, but the details were up to him. “He told us when and where he wanted it. It may have been during the first commercial break of his TV show,” Jaime said. “The more control he had to make decisions about his psoriatic disease, the better he was able to take his medication and take care of himself.”

By the time Andy was in middle school, he was helping with his injections and doing most of the talking at doctor’s appointments — even telling the physician he no longer wanted to take methotrexate. By high school, he was giving himself biologic injections.

The Bookers tried different tactics to help TJ deal with his every-other-week Humira injections. They’d have him count down from 10, then randomly inject on three or four, or distract him with games or conversation. Their best tool has been Buzzy, a bee-shaped icepack that vibrates to confuse the nerves just before injection.

Whether the child’s job is to hold Buzzy, apply cream or manage another aspect of their care, it’s vital that he takes ownership. “It’s critical for children to be able to engage in treatment, because that leads to good control, which sets up life patterns of caring about one’s self,” Paller said.

Growing up with psoriasis

Children with psoriasis may have a long road ahead, but remission could also be around the corner. “It’s important for kids to understand that they might have long periods without disease, and they might have long periods with active disease,” Cordoro said. “As parents, we have to reinforce the idea that they need to get to know their own bodies, because they might have a trigger only they can figure out.”

Because psoriasis is more than skin deep, children with psoriatic disease should be regularly screened for comorbidities or conditions related to psoriatic disease. Kids are more likely than adults to have psoriasis and psoriatic arthritis simultaneously. “About 5 to 10 percent of kids with psoriasis will have psoriatic arthritis,” he added.

Children with psoriasis are also at a higher risk for obesity than adults, Paller said. According to a 2013 JAMA Dermatology study she authored with Cordoro, obesity precedes psoriasis in more than 90 percent of children and puts them at risk for other comorbidities (conditions related to psoriatic disease). Paller also noted the increased risk of psychiatric illness, including depression, anxiety and bipolar disorder, in children with psoriasis — as well as their parents.

“Make sure that children and teens are screened appropriately so we can minimize the secondary impacts of the disease,” said Eichenfield, who also mentioned increased risk of myocardial infarction (also known as a heart attack, in which heart muscle dies), Crohn’s disease and problems processing cholesterol.

Childhood is the best time for parents and guardians to instill healthy lifestyle habits. Jaime Moy often reminded Andy that the doctor said it was good to play in the sun. Teyaka Booker encourages TJ to stay active, even during outbreaks. “We don’t want him to look back and say psoriasis took his childhood,” she said.

Treatment options for pediatric psoriatic disease

Psoriatic disease is challenging enough to treat in adults, but because it affects children differently, controlling pediatric psoriasis can be more difficult.

When Andy was a baby, his mother attributed his dry scalp to cradle cap. His pediatrician thought it was ringworm and prescribed antibiotics. When that didn’t work, he sent Andy to a dermatologist, who immediately diagnosed psoriasis.

Within a couple months, Andy was covered from head to toe. His physicians tried to keep his psoriasis under control with topical creams, ointments and phototherapy, but nothing helped the lesions. Then he began having other issues, such as frequent falling, which was diagnosed as psoriatic arthritis.

After many failed treatments, doctors ran out of options and approved biologics for him. By then, his arthritis had resulted in permanent damage, causing deformities in his hands and hip.

“Because psoriasis is harder to diagnose in children and can be easily confused with forms of dermatitis, there’s a lot of misdiagnosis, which means the patient may not be treated adequately,” said Paller. This is why it’s important to find a dermatologist who specializes in pediatric psoriasis or a rheumatologist who specializes in pediatric PsA who will work with the parent and child to develop a treatment plan that works best for them.


Andy Moy

First-line treatment

The sooner pediatric psoriasis is diagnosed and treated, the better. Eichenfield said the first-line treatment is often topical corticosteroids, even though they’re not specifically approved for children. (The exception is Taclonex, a topical suspension approved by the U.S. Food and Drug Administration [FDA] in 2015 for scalp psoriasis in children ages 12 to 17.) “Mild or moderate disease may be managed adequately with topical agents,” he said.

Phototherapy is often the next step for children old enough to sit still in the lightbox. Cordoro tells children to pretend they’re in a rocket ship. “Phototherapy is a great treatment with great efficacy and safety, but it’s really limited by access to a phototherapy center,” she said.

Systemic exceptions

For severe cases of psoriatic disease, more aggressive systemic medications have become common for pediatric use, although many are not approved for children.

Paller and Cordoro recently submitted a study that examined pediatric psoriasis medications internationally and found methotrexate is most common. “Methotrexate has been used for decades, so dermatologists are comfortable with it,” said Cordoro. “It’s the least expensive systemic medication, and it’s safe and effective if monitored properly. There’s a consensus on how to use it, though there’s a long list of potential side effects, mostly gastrointestinal.”

By age 7, Andy was taking the highest adult dose of methotrexate. He took it for about eight months, but stopped after experiencing side effects such as nausea and memory loss. “Weighing the benefits of medication versus the side effects, versus what would happen with his disease if he stopped taking this medication, was really difficult,” Jaime Moy said.

Balancing safety and efficacy against the progression of psoriasis is the crux of choosing treatments for children. It requires that parents collaborate with the care team to weigh risks and benefits.

“Parents are reasonably worried about side effects,” said Paller. “Unfortunately, concerns about safety have decreased the use of medications that can be very impactful.”

Biologic approval

Nearly a decade ago, Enbrel (etanercept) went to the FDA for evaluation after Paller led the first (and so far, only) clinical biologic trial involving children in the U.S. After 12 weeks, between 57 and 68 percent of children achieved a “remarkable” 75 percent reduction in their Psoriasis Area and Severity Index (PASI) score, she said.

“In emphasizing safety, we went through almost a decade of very little research in pediatric psoriasis treatment,” said Eichenfield. “While the options were there, they weren’t officially sanctioned with pediatric or adolescent studies, which minimized use. The regulatory agencies thought they were being protective, but it had a terrible impact because it led to under-treatment of significant psoriasis.”

In November 2016, the FDA approved Enbrel as the first biologic medication for treating moderate to severe plaque psoriasis in kids ages 4 to 17. That didn’t mean children weren’t using biologics or other systemic medications before, but they were using them off-label, requiring prior authorization by insurance companies.

Getting approval for biologics off-label is “tremendously hard,” Eichenfield said, and children must fail with other treatments like methotrexate before getting exemptions. Even then, kids may be denied. “There’s a big burden to document the extent of the disease and why they need the medicine off-label,” he said.

The first time Andy’s dermatologist suggested Enbrel, when it initially came out, his pediatrician wouldn’t sign off. Andy finally received prior authorization a few years later, because his severe psoriatic arthritis didn’t respond to other medication.

The future of pediatric treatments

Medical professionals hope the approval of Enbrel will open the door for the approval of other pediatric biologics — or at least easier access. Newer biologics are available for children in Europe, where Stelara (ustekinumab) is approved for ages 12 to 17, and Humira (adalimumab) for kids as young as 4.

“The U.S. is behind in embracing biologic therapies for cutaneous psoriasis, but the outlook is more positive now,” said Eichenfield. “We have more medicines coming out that will be studied in kids and teenagers, so we’re hopeful that other biologics will be approved.”

Cordoro said she’s already seen her practice start to shift from conventional systemic therapies to biologics. Although doctors have developed a general consensus about using off-label treatments, there’s still no formal guideline for prescribing pediatric psoriatic treatments. “As we don’t have many FDA-approved drugs for children, we need to share these decisions with families and educate them on their options so children can have a better quality of life — now and in the future,” she said.

 


Driving Discovery, Creating Community

This year, we’re celebrating 50 years of driving efforts to cure psoriatic disease and improve the lives of those affected. See how far we’ve come with this timeline of NPF’s history. But there’s still plenty to do, and we can’t do it without you! Learn how you can help our advocacy team shape the laws and policies that affect people with psoriasis and psoriatic arthritis – in your state and across the country. Help us raise funding to promote research into better treatments and a cure by joining Team NPF, where you can walk, run, cycle, play bingo or even create your own DIY event. Contact our Patient Navigation Center for free, personalized support for living a healthier life with psoriatic disease. And keep the National Psoriasis Foundation going strong by making a donation today! Together, we will find a cure.

Popular Advance Online