After 13-year-old Emma* experienced pain and inflammation in her eye, she was told she had a severe case of optic neuritis—swelling of the covering of the optic nerve, which sends signals to the brain. The condition is often an early indicator of multiple sclerosis, and shortly thereafter, Emma became one of the roughly 10,000 kids to be diagnosed with pediatric MS in the U.S.
The diagnosis left Emma and her parents shaken. How would it affect her life as a teenager? Would she still get to chase her dreams? Go to college? Get married? “Emma’s parents were diligent—they learned the ins and outs of treatment and really participated in the whole medical process,” says Tanuja Chitnis, M.D., professor of neurology at Harvard Medical School, and associate neurologist at Brigham and Women’s Hospital in Boston. “But they also had to learn when to let go of worry.”
In fact, the emotional fallout from a pediatric MS diagnosis can sometimes overshadow the disease itself. With treatment, Emma’s physical symptoms cleared, but mental struggles with anxiety and depression remained. She began attending individual therapy sessions and joined teen support groups, both of which are giving her the tools to fight back against her disease.
Coming to grips with a lifelong diagnosis isn’t easy for anyone—and for kids already facing the normal turbulence of being an adolescent, it may cause serious confusion and upset. How kids are guided through these trying times can make a big difference in helping them stay positive about what they’re capable of doing and achieving—now and in the future. Start with these tips.
Reframe MS As a Challenge, Not an Illness
Many kids and their families visit multiple doctors and specialists before getting the correct diagnosis of pediatric MS, says Maria Milazzo, Ph.D., a pediatric MS nurse practitioner at Stony Brook Children’s Hospital in New York. Due to the relapsing-remitting nature of the disease, a child’s symptoms may be gone by the time a specialist identifies what’s going on. That’s confusing to kids (not to mention more than a few adults!), who don’t understand why they are being told they have an illness when at the moment they feel fine.
“Instead of saying, ‘You’re sick,’ we’ve found it’s better to say, ‘There’s something a little different going on,’” says Milazzo. Playing up the challenge of MS while limiting talk of disease may help. “We tell kids, ‘We can help keep the troubling symptoms away, so you can do all the things you want to do, to your best extent.’ I often say the ‘M’ in MS stands for ‘manageable.’”
Reassure With Facts
Once widely misunderstood—or even outright denied—pediatric MS is now considered to be a condition with multiple, effective therapeutic approaches. Reassure your child that although being diagnosed feels scary, today’s treatments mean much of life will stay the same.
“I try to emphasize with families how kids can still go to school, college, have a career, get married, have children—all are very feasible,” says Dr. Chitnis.
Playing sports, studying for tests, goofing off with friends—the typical stuff of kidhood shouldn’t change just because of MS.
Remind Your Child With MS: No One Else Knows
At an age when fitting in with peers can feel like the most important thing in the world, a diagnosis of pediatric MS can set a kid apart—and not in a good way in a child’s mind, says Milazzo.
Yet the majority of pediatric MS symptoms, including fatigue, optic issues, and motor and imbalance problems, are mostly invisible to others. It's worth pointing out to kids with MS that what seems like a very big and all-too-obvious deal to them is likely not even noticed by their peers—at all.
“There are so many people with MS who are doing beautifully, to the extent we don’t even recognize they have MS,” says Milazzo. It’s important that kids realize the only people who likely know about their condition are the ones they choose to tell.
Let Kids Call the Shots
Not for everything, of course. But when it comes to deciding who should know about their disease, and how much to tell, many children feel a sense of control over their situation when they are the ones choosing to share the news.
What not to do: Take it upon yourself to be your youngster’s mouthpiece. Milazzo shares a story about a mom who posted on Facebook about her child’s MS diagnosis, hoping to garner support from her network of friends. “Naturally, her kid was upset," says Milazzo. "He said, ‘Now my whole school knows!’”
Keep Kids With MS Connected
Speaking of school, nearly all kids grumble about going at times, but it’s especially important to keep kids with pediatric MS in the mix with their peers. Children may feel more alienated if they can’t continue to learn along with their friends, says Milazzo.
This can be challenging if MS affects their learning abilities. “A third of kids with MS will have significant cognitive impairment, such as low-processing speeds and memory loss,” says Dr. Chitnis. “About two-thirds have mild cognitive impairment. Often, it’s manageable if we can work with schools on developing an educational plan to meet these challenges.”
The good news: Your child’s healthcare team can help create that plan with your child’s teachers. As a nurse practitioner, Milazzo has spent countless hours talking with school administrators who don’t understand how a kid might appear to be fine one day, then relapse the next. The bottom line: “Kids with MS benefit from the social aspect of school,” she says. “We help them stay in it.”
While pediatric MS can affect kids as young as 1 or 2, most children “present with symptoms around age 14,” says Dr. Chitnis. This coincides with a time in life when many teens play sports. That's a good thing!
Athletic participation delivers physical, social, and emotional benefits. Teens who play sports learn problem-solving skills, leadership, and goal-setting as they bond with their peers. All these skills help kids cope with the wide range of pressures and challenges that pediatric MS may bring.
In addition, physical activity can help reduce anxiety and stress, regulate weight, and balance mood, improving overall health. Some studies suggest that regular exercise may help combat obesity, reduce inflammation, and improve cognition in kids with MS. (One caveat: MS symptoms can worsen in the heat, so cooling down after practice is important.)
There may be days when kids feel too fatigued to attend practice, but on the whole, they are better off being part of a team than sitting on the sidelines. (Be sure to let their coach know about their condition.) “Sports are a great way to remind kids not to focus on their limitations, but rather on what they can do,” says Dr. Chitnis.
Build Their MS Kids Community
Knowing other kids are going through similar struggles can be reassuring. At clinics and pediatric MS centers across the U.S., support groups allow teens to meet peers facing similar challenges. (Many offer groups for parents as well.) Family counselors and psychologists are also on hand.
Milazzo currently runs summer camps for kids with MS. “We wanted to create a community for them,” she says. “We push their physical limits, and they do things they’ve never done before in an outdoor setting, surrounded by kids who are just like them.” Many kids who go through the program return as volunteer staff members or serve as mentors for the campers, showing through example just how manageable the condition can be.
Foster Your Teen’s Independence (MS or Not)
Getting a driver’s license. Going to prom. Working a first job after school. Maybe heading off to college. Kids with pediatric MS need to experience all the milestones of adolescence, and parents need to let them do it—which can mean letting go of a super-protective attitude. “Figuring out the balance can be tough for parents, but it’s important to do,” says Dr. Chitnis.
Sure, it’s harder when kids still rely on parents for frequent doctor’s visits, and require extra assistance on days they feel too sick to attend school. But “this is the time when they’re supposed to become independent,” says Milazzo. “Whenever possible, they still need the opportunity to grow and develop as a typical teenager would.”
Talk Openly on the Regular
One of the hardest things for parents to do is to speak honestly with children about serious health matters. Yet, it’s essential. For starters, kids need to understand the ramifications of relapses and the goals of treatment. “We never want to scare kids, but it’s important they know why they need to take their medications, and why they should always alert their doctors about any new symptoms,” says Dr. Chitnis.
Honesty can decrease kids’ fears, too. “Kids know when something is wrong,” says Milazzo. “They’ll be scared and assume the worst if you don’t tell them what’s going on. I’ve had kids say to me, ‘I thought I had cancer or a brain tumor. It’s just MS!’”
While there is no one script that works for every child, Milazzo advises parents be age-appropriate. A child who is diagnosed at 8 should receive an explanation that makes sense for an 8-year-old—for instance, focusing on how treatments will help improve a child’s balance so he can safely ride his bike, or restore vision so she can catch a softball.
“Put it in language a kid can understand,” Milazzo explains. “You shouldn’t give them a long lecture. Give them little bits over time, then go back and revisit what this means.”
As your child gets older, questions may change, as well as symptoms. Honesty about what you do and don’t know will help your child trust your advice. Says Milazzo, “Tell your child, ‘I can’t make everything better for you, but I’m here to help you take the next step.’”
*Emma’s name has been changed to protect the privacy of a child.