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Greater Recognition of Pediatric MS

Last updated: May 2020

Although pediatric MS is a rare condition, more children than ever before are being diagnosed. Anywhere from 1 to 3 out of every 100,000 kids around the world may have pediatric MS.1,2 This is about 5,000 kids in the United States.1 Although it’s still very uncommon, the rising number of pediatric MS cases is interesting.

Why is pediatric MS on the rise?

When we hear that more children are being diagnosed with pediatric MS, it’s easy to jump to the idea that MS must be impacting more people. However, this may or may not be true. Improvements in medical and diagnostic testing, such as the increasing use of MRI (magnetic resonance imaging) have helped diagnose more cases than in the past.1

Also, for decades it was thought that MS only affected adults. This attitude may have led many doctors to not suspect MS in a young child. They instead may have pursued other, more likely possibilities.1 This could have led a child with MS to not be diagnosed until adulthood.

Awareness of pediatric MS

However, awareness of pediatric MS is at an all-time high. Now, on average, it takes 6 months from the time symptoms start for a child to be diagnosed with MS.1 Because we have made improvements in our understanding of MS, it’s hard to tell whether or not more kids are developing MS, or if we’re just now seeing the true span of the condition. Now that we have a new baseline for diagnosis, experts will be able to track trends over time to determine whether or not pediatric MS is on the rise.

How are doctors diagnosing pediatric MS?

As mentioned, doctors are now using MRI and other medical tests (such as blood and cerebrospinal fluid (CSF) tests) to diagnose MS. In addition, the International Pediatric MS Study Group (IMPSSG) created new diagnostic guidelines. A doctor can follow these steps to determine if a child’s symptoms are due to MS. Some of the criteria include having symptoms like double vision, vision loss, numbness, weakness, and urinary issues. Episodes of symptoms must have happened at least 2 or more times, and be at least 30 days apart.1,2

Ruling out other, similar disorders

The guidelines also include steps for ruling out other, similar disorders. Diagnosing MS, especially in children, can be tricky. This is because it involves looking for signs that point toward MS, while also finding things that rule out other conditions.1

If you are concerned about your child having MS, it’s never a bad idea to ask about it. Your doctor can help determine whether or not it may be a possibility in your child’s case. Starting the conversation about pediatric MS may help get the journey to diagnosis started.

What have we learned over the years about pediatric MS?

Although we still have a lot to learn about pediatric MS, there are some things we have learned over time that have changed our understanding of the condition. Several of these include:1,2

  • Over 93 percent of all cases of pediatric MS are relapsing-remitting. This is more than for adults.
  • Relapses are 2 to 3 times more common in kids than adults. However, kids tend to recover faster and more fully than adults.
  • It takes more time for kids to develop significant disability or to develop secondary-progressive MS when compared to adults.
  • Kids may be more likely to experience cognitive issues and mental health issues with their MS when compared to adults.
  • There may be more evidence of disease activity or burden in kids. Examples of this include more brain lesions seen on kids’ MRIs or signs of more inflammation when compared to adults.
  • Only 1 percent of pediatric MS cases occur in children younger than 10 to 12 years old. In this age group, boys and girls are affected equally.
  • In teenagers, girls are almost 3 times more likely to be affected than boys, which is similar to the adult population.

While these are interesting trends found across several studies, much more research is needed to fully understand pediatric MS.

How is pediatric MS treated?

There is currently one disease-modifying therapy (DMTs) approved for pediatric MS, Gilenya (fingolimod). However, many doctors will prescribe drugs for adult MS in kids. These decisions are made on a case-by-case basis. Clinical trials are currently underway to find more DMTs that can be used in children. Other common lifestyle changes used to help manage MS in children include eating a balanced diet, getting regular physical activity, maintaining a strong social support system, and getting good sleep. Your doctor can help determine the best treatment options in your child’s situation.

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