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Pediatric Multiple Sclerosis

Discover what it’s like to navigate a diagnosis of pediatric MS through the stories of children, teens, parents and providers in this video.

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What Is MS?

Multiple sclerosis is an unpredictable disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body.

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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. Read the sections below, check out the “New to Pediatric MS Resource Guide” and register for the program New to Pediatric MS: Navigating Your Journey.

Pediatric MS symptoms

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 can impact a person’s 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.

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MS affects kids and families

When a child is diagnosed with MS, the whole family is affected. In this episode of RealTalk MS, we explore what it means to be a kid living with MS with Hannah and her mom, Melissa.

Listen Now

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New to Pediatric MS: Navigating Your Journey

Connect and learn with others who are new to pediatric MS in this virtual program designed for preteens and teens who live with MS and their parents.

Learn More

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Treating Pediatric MS

Gilenya was first approved in 2018 to treat MS in children ages 10 and older. Watch a video or download the consensus on DMTs to learn more about other treatment options.

Watch the Video

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.

SEARCH TOOL AND GUIDES

Find doctors and resources

Find pediatric neurologists, other healthcare providers and community resources, as well as guides that will help you choose the best option for you and your family.

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Find Providers

Pediatric MS support

Connect with other families
Connecting with others who can relate to what you’re going through can really help you navigate this uncertain time. There are several online communities you might join:

Self-help groups
Self-help groups bring people together who share common life experiences for support, education and mutual aid. The MS Youngsters Group meets virtually so you can participate no matter where you live. You can also check your area for a local support group.

Contact an MS Navigator
Making sound decisions relies on having the right information at the right time. Our MS Navigators are highly skilled professionals equipped to respond to your needs, including finding a provider in your community, answering questions about MS or helping you connect with others. No question is too big or too small. Contact an MS Navigator to learn more.

Research

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.

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.

Additional resources

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