Pediatric MS

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 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.

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. 

Finding a pediatric neurologic specialist is critical for the care of children and teens with MS and related central nervous system demyelinating disorders. You can search our directory for pediatric neurologists based on your zip code simply by selecting Healthcare Provider 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 a youth with MS enters adulthood, their care will 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 approval of Gilenya in 2018 for children with MS over age 10 resulted from the participation of children and teens in research.  
 
The Network of Pediatric Multiple Sclerosis Centers (NPMSC) is a United States based network comprised 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 and growing the largest collection of well-characterized pediatric MS cases in the world.


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.

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.

Network of Pediatric MS Centers- newsletter

The Pros and Cons of Remote Learning for MS Kids- Health Central article

Ready, Set, Go! How to Keep Kids With MS Active- Health Central article

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.

Growing Up Fast — Momentum Article