Helping Kids With MS Manage Relapses
Children with multiple sclerosis tend to have more frequent flare-ups than adults with the condition do. Here’s what you need to know to help them navigate their symptoms so they can focus on what they do best: being kids.
Peter Moronta Diaz was diagnosed with pediatric multiple sclerosis three years ago at age 11. Just as he and the rest of his family were getting used to this new life with a chronic neurological condition, a new and terrifying symptom struck out of the blue: One morning he woke up with a severely inflamed eye and double vision.
“It was shocking because his vision had been normal,” says his mother Rosalia Ayala, who lives in New York City. “The problem with his eye lasted several weeks and he couldn't go to school. His doctors explained that it’s common for eyesight to be affected in a MS crisis and that you may even lose some vision permanently.”
When Michelle Ostrowski’s daughter had her first MS flare-up, the symptoms were less dramatic. Shaye, who was diagnosed two years ago at age 13, noticed an increase in tiredness and dizziness, but the new symptoms didn't seem that significant. Yet when she went for a routine MRI last year, new lesions were discovered, which meant her disease had progressed. “This was so upsetting and not the news we were expecting,” says Ostrowski, who lives in Farmington, MI."Shaye didn't seem any worse."
Peter and Shaye’s experiences are pretty typical for kids with MS—there really can be no rhyme or reason for the relapse, how it presents, or the damage it may leave behind. And thing about pediatric MS is that these attacks often occur much more frequently than in adults. “Adults can have one once or twice a year, but kids can have double that,” says Mary Rensel, M.D., director of Pediatric Multiple Sclerosis and Wellness at the Cleveland Clinic’s Mellen Center for Multiple Sclerosis. In fact, research shows that over the first six years of diagnosis, children with MS have 2.3 times the number of relapses as adults do.
Unfortunately, doctors don’t yet fully understand why kids are more prone to flare-ups. “The disease appears to be more inflammatory early in the course, which translates to more frequent relapses,” says Lydia Marcus, M.D., an assistant professor in pediatric neurology at the University of Alabama at Birmingham. “After many years, relapses will become less common, but patients can slowly accrue disability.”
And that’s really where most of the concern lies. Although children with MS tend to recover well from their attacks, “there is a risk that they will have some residual symptoms persist,” says Dr. Marcus. “We also know that more frequent relapses predict more disability later on in life, and so our goal is to minimize them as much as possible.” The good news there? Early and aggressive treatment with a disease-modifying therapy can significantly reduce the risk of flare-ups and delay progression, says Dr. Marcus. In the meantime, it helps to have a game plan for when they do occur, so let’s get to it.
What Is an MS Relapse Again?
Some flare-ups, like Peter’s, are impossible to miss. Others, like Shaye’s, may be sneakier. Either way, you need to know what counts: An MS relapse is any new symptom—or recurrence of an old one—that lasts for 24 hours or more, says Julie Fiol, R.N., director of MS information and resources at the National Multiple Sclerosis Society in New York City. Each one is different, and some can be severe, lasting anywhere from a few days to a few weeks.
Symptoms can include:
weakness and tingling
vision changes (blurred, loss of, or double vision)
concentration or memory problems
What Should Parents Do When Their Child Relapses?
Make an appointment. Even if the new symptoms seem fairly minor, they should be evaluated by your child’s doctor to confirm what’s going on and rule out other causes, such as infection. Most likely, your doctor will order an MRI to check for new lesions, says Jeffrey Kane, M.D., a pediatric neurologist with Child Neurology Consultants of Austin, which is based in Texas. (Lesions are new areas of damage or scarring in the brain or spinal cord.)
Expect a new prescription. Healthcare providers sometimes reserve medication only for relapses that are significantly interfering with your child’s functioning at home and at school, like a problem with vision or ability to walk safely, says Fiol. When additional treatment is prescribed, it’s typically a three- or five-day course of intravenous or oral (pill) corticosteroids. This course is sometimes followed by a gradually decreasing dose of oral corticosteroids over several days. The goal of steroid therapy is to improve symptoms and hasten recovery time. These drugs do not, however, change the long-term course of MS or have any other long-term benefits. “In other words, whether your child’s relapse is treated with corticosteroids will not impact his or her future disability or relapse likelihood,” says Fiol. Think of them more like relapse rescue meds.
Get your child talking. Ask them how they’re feeling about their symptoms and what, if any, help they need from you. Says Fiol, “Allow them the time they need to recover, but also encourage them to continue doing as much as they possibly can. If they are still able to attend school and extracurricular activities, have them do so. Continuing connections with peers is important during this time as well. The bottom line—try to keep life as normal as much as you can.”
Stay optimistic. “There is now oral medication called fingolimod (Gilenya) that is proven to limit the number of relapses,” says Dr. Kane. “It seems to be even more effective in kids than in adults. It is the first time a treatment for MS has been approved for kids.”
And there could also be more MS drugs specifically for kids on the horizon. In fact, the Food and Drug Administration is asking drug companies to help bridge the gap, says Dr. Rensel: “There is currently one drug for children with MS—and 17 for adults.”
Furthermore, there’s a lot of on-going research. “There are so many interesting studies right now trying to understand pediatric MS,” says Dr. Marcus. “Some are looking at the environmental, diet, and genetic risk factors that might affect why some children develop MS. Other studies are looking at the long-term effects of MS on a child’s development, cognition, or mood. And many studies are evaluating the efficacy of various disease-modifying therapies approved for adult relapsing MS in pediatric MS.”
As Dr. Kane says, “We are not yet close to curing MS, but we are getting close to being able to keep it in remission by stopping the relapses. It is a very hopeful and exciting time.”
Relapse Rates in Children: Multiple Sclerosis and Related Disorders. (2014). “Elevated Relapse Rates in Pediatric Compared to Adult MS Persist for at Least 6 Years.” msard-journal.com/article/S2211-0348(13)00070-9/fulltext
Cognition and Mood: Neurology. (2016). “Pediatric Multiple Sclerosis Cognition and Mood.” n.neurology.org/content/87/9_Supplement_2/S82.full.pdf
Disease-modifying Therapies: Neurology. (2018). “Use of Newer Disease-modifying Therapies in Pediatric Multiple Sclerosis in the US.” n.neurology.org/content/91/19/e/1778