Frequently asked questions: Multiple sclerosis in children and teens
Pediatric MS refers to MS occurring in people under age 18. Fewer than 5,000 children and teens live with MS in the United States and fewer than 10,000 worldwide - But if you’ve just heard that you are or your child is one of these kids, you probably have a lot of questions. Let’s quickly answer some of the most common ones:
- Is pediatric MS fatal? No
- Is there a cure? Not yet
- Did I do something to cause this? No
- Is MS contagious? No
- Are my siblings (or my other kids) going to get MS? Probably not
- Can I continue to be active? Absolutely
- Will I need a wheelchair? Probably not
- Can I continue to go to school? Yes
Now that we’ve gotten these scary questions out of the way, discover more information to empower you and your family to face this disease. Steps you can do now include:
- Continue reading the sections below for more information and resources specific to Pediatric MS.
- Check out the “Pediatric MS Resource Guide”
- Register for the program Pediatric MS: Navigating Your Journey.
- And, if you still need help or have questions, contact an MS Navigator. Our MS Navigators are highly skilled professionals equipped to respond to your needs, including finding a provider in your community, navigating insurance coverage, answering questions about MS or helping you connect with others. No question is too big or too small.
The symptoms of MS in children and teens are similar to those that adults experience. For children with MS, though, there are some differences:
- Children with MS exclusively have a relapsing-remitting course. This means there are clear attacks (relapses) of symptoms that subside (remit).
- Children may experience frequent relapses (possibly more than typically seen in adults).
Studies have also shown that children’s recovery from relapses seems to be very good and often more rapid than that of adults.
Multiple sclerosis age of onset
MS can occur at any age, but pediatric MS is relatively rare. Multiple studies have shown that only 3-5% of all individuals diagnosed with MS experience disease onset before 16 years of age. The majority of MS diagnoses occur between the ages of 20 and 40.
Diagnosing MS in children
As with adult MS, there are no symptoms, physical findings or laboratory tests that can — by themselves — determine if you or your child has MS. Doctors use several strategies to diagnose MS:
- Finding evidence of damage in at least 2 separate areas of the central nervous system (CNS), which includes the brain, spinal cord and optic nerves AND
- Finding evidence that the damage occurred at different points in time AND
- Ruling out all other possible diagnoses
Diagnosing MS in children is more challenging than in adults because of other childhood disorders that have similar symptoms, such as acute disseminated encephalomyelitis (ADEM). But as with adults, it’s important to diagnose MS as early as possible to prevent disease progression.
Quality of life for kids with MS
If you or your child is living with MS, it is important to prioritize healthy behaviors, including:
- Eating a nutritious diet
- Getting regular exercise
- Not vaping or smoking (for teenagers)
- Keeping up with preventive care
- Managing other medical conditions
Research shows that these good habits contribute to overall health and some can even impact your MS progression and lifespan.
Treatment for pediatric MS
The treatment of MS in children and teens, as well as adults, involves several strategies:
- Modifying the course of the disease
- Managing relapses
- Maximizing lifestyle interventions
- Managing symptoms
Medications known as disease modifying therapies (DMTs) are effective at preventing relapses and disability accumulation. The U.S. Food and Drug Administration (FDA) has approved more than a dozen DMTs to treat adults with relapsing forms of MS. In May 2018, the FDA approved the use of the oral MS therapy Gilenya® (fingolimod) for the treatment of children and adolescents 10 years of age or older with relapsing forms of MS.
Many of the medications used for adults with MS have been studied in children with MS. Skilled pediatric MS healthcare providers can adapt the treatments with FDA approval in adults for their younger patients.
Pediatric MS healthcare providers
Finding a pediatric neurologic specialist is critical for the care of children and teens with MS and related CNS demyelinating disorders. You can search our directory for pediatric neurologists based on your zip code. Simply select “Healthcare Providers” as the category and “Pediatric Neurologist” for the support type. You can also contact an MS Navigator to find pediatric providers across the country.
When you or your child enters adulthood, their care will often be transitioned from a pediatric MS provider to an adult MS provider. Questions or needs related to this transition will be different for everyone. Consider connecting to the Child Neurology Foundation Transition Care Program for support in ensuring a successful transition.
Pediatric MS research and clinical trials provide insights that adult MS research doesn’t. Risk factors and prevention of MS are two areas that may benefit from pediatric research. The participation of children and teens in research was crucial to the approval of Gilenya for children with MS over age 10 in 2018.
The Network of Pediatric Multiple Sclerosis Centers (NPMSC) is a United States-based network composed of adult and child neurologists, scientists and other research professionals whose unifying mission is to discover the causes, investigate determinants of remyelination and neuroprotection, advance therapeutics and improve outcomes of pediatric MS. Through ongoing studies, the NPMSC is measuring clinical, environmental and cognitive manifestations of early onset MS. It is also growing the largest collection of well-characterized pediatric MS cases in the world.
The iConquerMS Kids & Teens Platform is a community of kids and teens living with MS, their parents or legal guardians, researchers, doctors, and others who have come together to understand MS and search for solutions. As a member of iConquerMS, you can confidentially share your health information, questions, and ideas to inform and inspire important MS research. iConquerMS is governed by and for the MS community.
There are multiple studies of pediatric MS currently underway in the U.S. and around the world. Learn more about participating in clinical trials or find ongoing pediatric MS studies.