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Pediatric MS

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

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What is MS?

Multiple sclerosis (MS) 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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In this article

Welcome

You’ve just heard that your child has multiple sclerosis (MS). You probably have a lot of questions and possibly some fears.  Let’s quickly answer some of the most common questions:
 
  • Is my child going to die? No
  • Is there a cure? Not yet
  • Did I do something to cause this? No
  • Can my child give MS to someone? No
  • Are my other kids going to get MS? Probably not
  • Can my child continue to be active? Absolutely
  • Will my child need a wheelchair? Probably not
  • Can my child continue to go to school? Yes
Now that we’ve gotten those scary questions out of the way, let’s expand on these answers and help you feel empowered through knowledge.

MS in children and teens

MS in children is not that different from MS in adults. Children with MS exclusively have a relapsing-remitting course, which means there are clear attacks (relapses) of symptoms that subside (remit). During the periods of remission between attacks, there is no progression of the disease. Even though children may experience frequent relapses (possibly more than typically seen in adults), studies have shown that children also seem to have very good recovery that is often more rapid than that of adults.

Less than 5,000 children and teens are living with MS in the United States and less than 10,000 worldwide. Diagnosing MS in children is more challenging than in adults because of other childhood disorders with similar symptoms and characteristics.

Treating pediatric MS

The treatment of MS in children and teens, as well as adults, involves several strategies:
  • Modifying the disease course
  • Managing relapses
  • Maximizing lifestyle interventions
  • Managing symptoms
There are medications that are effective at preventing relapses and disability accumulation known as disease modifying therapies (DMTs). More than a dozen DMTs are approved by the U.S. Food and Drug Administration (FDA) 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. 

What You Need to Know About Gilenya®

This video features Brenda Banwell, MD of Children's Hospital Philadelphia and was created in 2019 after the approval of Gilenya® in children with MS age ten years and older. Information is accurate as of then.  Please visit the Gilenya page of of our website for the most updated information. To learn more about Gilenya and other disease modifying therapy options, download the Consensus on Disease-Modifying Therapies.

Joshua
The National MS Society is your trusted partner for pediatric MS and will help you with the information and resources you need to keep moving forward.
 

Pediatric MS centers and providers

The Network of Pediatric MS Centers provides comprehensive evaluation and care of children and teens with MS and related central nervous system (CNS) demyelinating disorders. A child does not need to have a definite diagnosis of MS in order to be evaluated at one of these centers.

In addition to centers within the network, you can also search our directory or contact an MS Navigator to find other providers across the country who treat children and teens.

Pediatric MS support

Connect with other families
Connecting with other parents who can relate to what you’re going through can really help you navigate this uncertain time and feel empowered. There are several online groups where you can connect with others: 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.

Champ Camp
The National MS Society invites you to join us for a wonderful, out of this world SPACE weekend at Champ Camp, a weekend recreational program for families with a child or teen with multiple sclerosis at Camp For All in Burton, Texas. Learn more.

An Evening with Oscar
Join Oscar the MS Monkey for a FREE meet/greet/play with families who have a child diagnosed with MS. Dates and locations include:
  • February 20- Des Moines, IA
  • February 22- Nashville, TN
  • February 23- Birmingham, AL
  • February 24- Jacksonville, FL
  • February 25- Ft. Myers, FL
  • March 6- Lansing, MI
For more information or to register, visit their website.

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 approval of Gilenya in 2018 for children with MS over age 10 resulted from the participation of children and teens in research.  
 
There are multiple studies of pediatric MS currently underway in the US and around the world. Learn more about participating in clinical trials or find ongoing pediatric MS studies.

Additional resources

Kids Get MS Too: A Handbook for Parents Whose Child or Teen has MS- You’ve just heard that your child has MS. We’re here to help you learn about MS so you can feel confident in helping your child take charge of his or her life. Download now.

También Hay Niños con Esclerosis Múltiple: Guía Para Padres De Un Niño o Adolescente Con Esclerosis Múltiple- Acaba de enterarse de que su hijo tiene esclerosis múltiple. Estamos aquí para ayudarlo a aprender sobre la esclerosis múltiple para que así pueda sentirse seguro al ayudar a su hijo a controlar esta enfermedad.

Pediatric-Onset Multiple Sclerosis: Unique Features and Important Considerations- A collaborative webinar from the National MS Society and Can Do MS featuring Anusha Yeshokumar, MD and James Sumowski, PhD of the Icahn School of Medicine at Mount Sinai. Watch now.

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