Multiple Sclerosis in Children

As with adults, there’s no way to prevent or cure MS in children. However, many treatments are available to address symptoms for children with the condition. Although MS is a chronic and progressive disease, it isn’t fatal.

Children with MS can maintain a good quality of life well into adulthood by treating and managing the symptoms and associated challenges. 

Here's what you need to know to ensure proper diagnosis and treatment if your child has MS.

• Relapsing-Remitting MS (RRMS), in which people experience occasional flare-ups of new or worse symptoms followed by periods of remission, or no symptoms.
• Secondary-Progressive MS (SPMS) comes after the RRMS stage. In this type, the symptoms and resulting disability gradually progress over time.
• Primary-Progressive MS (PPMS), in which symptoms are progressive from the onset of the disease.

• Fatigue
• Muscle weakness, tingling, and numbness
• Vision problems (including double vision) or vision loss
• Difficulty maintaining balance
• Problems walking
• Muscle tremors or spasticity
• Bowel or bladder control problems
• Slurred speech
• Problems with thinking and memory

Relapses and Other Signs of Pediatric MS

“Some studies have suggested that children may have up to three times as many relapses as adults early on in the course of their MS,” says E. Ann Yeh, MD, director of the pediatric neuroinflammatory disorders program at the Hospital for Sick Children in Toronto, and a professor of pediatric medicine at the University of Toronto.

As a result, children and adolescents with MS may face challenges in academic performance and family relationships, and the condition can further complicate issues most young people deal with, like poor self-image and making friends.

“While it’s true kids generally have more relapses than adults, and they also typically show more inflammation on MRI, as a group the kids recover more fully from relapses than adults,” says Lauren B. Krupp, MD, the director of the NYU Langone Multiple Sclerosis Comprehensive Care Center in New York City.

“As a group, many kids with MS do extremely well. However, children with MS aging into adulthood will reach any disability level generally at a younger age than those with adult-onset MS, so those with pediatric-onset MS may need to use a cane or other assistive devices at a younger age.”

• Low sunlight exposure or low vitamin D levels
• Early exposure to Epstein-Barr virus (EBV)
• Exposure to secondhand smoke
• Exposure to pesticides
• Living in an area with poor air quality or pollutants
• After puberty, sex hormones may play a role, with girls being 2 times more likely to develop pediatric MS than boys

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• Obesity

Genes can also play a role. For example, researchers have identified the HLA allele (or gene variation) that raises the risk of pediatric MS. A combination of genetic predisposition and exposure to certain environmental factors is likely what drives MS.

Tests that a doctor may order include:

• Blood tests
• An MRI scan
• A spinal tap, also called a lumbar puncture
• An evoked potentials test, which is a noninvasive procedure where tiny electrodes are attached to the head while your child receives visual or auditory stimuli

The Challenges of Diagnosing Pediatric MS

MS in children often goes undiagnosed because pediatricians sometimes miss the condition in their patients and are unfamiliar with the signs and symptoms.

“Also, adolescents sometimes aren’t forthcoming about their symptoms, and parents can be slow to recognize the problem,” says Dr. Krupp. “In general, the younger the child, the harder the diagnosis.”

“There are several diagnoses that look very much like MS but may respond to different medicines than MS,” says Dr. Yeh. “The most important thing is that your child’s care team thinks broadly when encountering a young person with new brain lesions that look inflammatory.”

Diagnosing MS vs. Other Conditions

Diagnosing MS in children is more challenging than it is in adults because it is often confused with other disorders with similar symptoms and characteristics that are more common in young people, such as acute disseminated encephalomyelitis (ADEM) or clinically isolated syndrome (CIS).

Pediatric MS vs. ADEM

Acute disseminated encephalomyelitis is a brief but intense attack of inflammation in the CNS (the brain and spinal cord) that, like MS, causes damage to the myelin sheaths that protect nerve cells. The condition is sometimes called post-infectious encephalomyelitis or immune-mediated encephalomyelitis. In most cases of ADEM, symptoms occur within two weeks of a viral or bacterial infection.

As in MS, common symptoms of ADEM include vision loss, muscle numbness and weakness, and balance or coordination problems. Unlike MS, however, ADEM is monophasic: It occurs once without recurring later, whereas MS has relapses or progression.

Pediatric MS vs. CIS

Pediatric MS vs. Other Conditions

Some other conditions that can cause symptoms similar to MS and that may need to be ruled out when diagnosing a child include:

• Isolated optic neuritis
• Isolated transverse myelitis
• Neuromyelitis optica spectrum disorder (NMOSD)
• Myelin pligodendrocyte glycoprotein antibody (MOG)–associated disease
• Central nervous system malignancies
• Leukodystrophies
• Mitochondrial disorders

Off-label Use of DMTs for Pediatric MS

• dimethyl fumarate (Tecfidera)
• teriflunomide (Aubagio)
• alemtuzumab (Lemtrada)
• natalizumab (Tysabri)
• rituximab (Rituxan)

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• glatiramer acetate (Copaxone)
• interferon beta (Avonex, Rebif, Plegridy)

Options for Treating MS Relapses

Although most children generally tolerate corticosteroids well, they may experience some side effects, such as:

• Behavior changes
• Increases in blood sugar levels
• Nausea

Other options for treating relapse include plasma exchange and intravenous immunoglobulin (IVIG). Plasma exchange, also called plasmapheresis or PLEX, essentially removes the antibodies in the blood that attack myelin in the nerve cells of people with MS. Several treatments are given over a couple of weeks.

Additional Parts of the MS Treatment Plan

Any treatment plan for children with MS should also include:

• Physical therapy
• Occupational therapy
• Speech therapy

These can help improve mobility, muscle strength, and balance and coordination.

It’s important to remember that children diagnosed with MS can experience emotional and social challenges. Having a chronic condition like MS can affect a young person’s self-confidence, academic performance, peer relationships, family and social life, and overall behavior.

It may also impact how they view their lives, both in the present and in the future.

Thus, Krupp says, it’s vital that children with MS communicate regularly with school counselors, therapists, and others who can help them with these challenges. Encourage them to talk about their experiences and problems, and make sure they get support from teachers, family, friends, and other members of the community.

“A team that provides counseling, ideally peer-based support programs, is key," she says.

Yeh adds that a comprehensive program should address all the needs of children with MS, and ideally should include physicians, nurses, nurse practitioners, social workers, psychologists, neuropsychological assessment, and physiotherapists and occupational therapists, among other healthcare workers.

Ultimately, planning your child’s MS treatment should include discussing the goals and expectations of the child and the family, as well as any potential risks. Children on DMTs and other prescription medication should also undergo routine monitoring (including blood tests, MRIs, and other tests) to make sure the treatment is working and to minimize side effects.

Managing emotional and social challenges, and sticking to a healthy lifestyle with an appropriate diet and physical activity, are key parts of maintaining a good quality of life well into adulthood. "It’s critical that kids exercise, stay engaged with friends, and participate fully in school,” says Krupp.

Maintaining a healthy body weight and keeping active are also important, Yeh adds. “Exercise physiologists, nutritionists, and dietitians can help us when needed. Social workers and nursing staff play important roles in the care of families of children with MS as well.”

“We’re still learning about long-term outcomes with pediatric MS, but I like to be optimistic, as our therapies are better than before,” Krupp adds. “I have many patients in their mid-thirties who are doing well and have had MS since their early teens.”

• Mood disorders
• Cognitive impairment
• Anxiety
• Depression
• Difficulty socializing

With the right support and comprehensive care, many, if not all of these complications can be avoided.

Your child’s MS healthcare providers are a good place to start to find peer support resources in your area. And, to help you when you accompany your child to their healthcare appointments, consider using TheKidsDoc app from the American Academy of Pediatrics (AAP).

For summertime fun and learning, the National MS Society holds adventure camps for young people with MS in grades 4 through 12 who live in a household with someone affected by MS. In 2021, they offered virtual adventure camps for teens ages 13 to 17 who have a parent with MS.

The NMSS also operates online support groups for kids, teens, and people in their twenties, such as The MS Youngsters Group, or the Parents of Children and Young Adults With MS Group. They also have a useful online directory of support groups to help you find one in your area.

• Adults are not the only ones diagnosed with MS. Children can develop MS too.
• The vast majority of pediatric MS cases are the relapsing-remitting form of the condition (RRMS).
• Although pediatric MS cannot be prevented or cured, it can be managed through a combination of DMTs, lifestyle changes, and a comprehensive care plan. Many kids with MS go on to live happy, fulfilling lives into their adulthood.
• Reach out to your healthcare provider for helpful resources and support.