“Among children who develop MS, most are adolescents,” says Lauren B. Krupp, MD, the director of the NYU Langone Multiple Sclerosis Comprehensive Care Center in New York City. “The frequency is highest among older teens while, in contrast, among those who are under 12 years of age, there are probably only 10 to 15 percent who have the diagnosis,” Dr. Krupp says. Research suggests that the vast majority (up to 98 percent) of children with MS have the relapsing-remitting form of the condition (RRMS). Here’s what you need to know to ensure proper diagnosis and treatment if your child has MS. RELATED: Speaking Multiple Sclerosis: A Glossary of Common Terms ADEM 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. 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, MOG-associated disease, central nervous system malignancies, leukodystrophies, and mitochondrial disorders. MS in children also often goes undiagnosed because pediatricians don’t often see 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,” Krupp says. “In general, the younger the age of the child, the harder the diagnosis.” To be diagnosed with MS, according to the criteria defined in 2007 by the International Pediatric MS Study Group and last updated in 2013, a child must experience one of the following:
At least two nonencephalopathic, clinical CNS inflammatory events separated by at least 30 days and involving more than one area of the brain or spinal cord (Nonencephalopathic means that the person’s cognition is not affected by the inflammatory event.)One nonencephalopathic episode typical of MS associated with magnetic resonance imaging (MRI) findings consistent with MSAn attack of ADEM followed by a nonencephalopathic clinical event, three or more months after symptom onset, that is associated with new MRI lesions consistent with MSA first, single, acute event (for example, CIS) that isn’t ADEM but produces MRI lesions consistent with MS
“There are several diagnoses that look very much like MS but may respond to different medicines than MS,” says E. Ann Yeh, MD, the director of the pediatric neuroinflammatory disorders program at the Hospital for Sick Children (SickKids) in Toronto, and a professor of pediatric medicine at the University of Toronto. “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.” RELATED: 16 Conditions Commonly Mistaken for Multiple Sclerosis
Muscle weakness, tingling, and numbnessVision problems (including double vision) or vision lossDifficulty maintaining balanceProblems walkingMuscle tremors or spasticityBowel or bladder control problemsSlurred speech
But children with MS may also experience symptoms that adults don’t typically have, like seizures and lethargy. Children also may experience more frequent relapses than adults with early MS, according to the NMSS. “Some studies have suggested that children may have up to 3 times as many relapses as adults early on in the course of their MS,” notes Dr. Yeh. 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. Although research indicates MS progresses more slowly in children than in adults, younger people with the condition are more likely to have significant disability earlier following diagnosis than those with adult-onset MS, the NMSS reports. “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,” Krupp says. “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.” “Several studies have documented [that] the age at which individuals with pediatric-onset MS reach a stage of irreversible disability [is] in the mid-thirties,” adds Yeh. “That’s about 20 years after the first signs of onset. In the adult population, it takes less time to reach a point of irreversible disability, but the time at which this occurs is later than in the pediatric population.” This suggests that people diagnosed as adults are older when they experience MS-related disability. RELATED: How Age Affects Multiple Sclerosis Symptoms and Progression Other oral DMTs used off-label in children with relapsing-remitting MS include Tecfidera (dimethyl fumarate) and Aubagio (teriflunomide), which are both currently being evaluated in clinical trials involving pediatric patients with the condition. Another adult MS medication, Tysabri (natalizumab), has also been investigated for use in children with the condition, as has Rituxan (rituximab), an immunosuppressant used in rheumatoid arthritis and various forms of cancer.
Options for Treating MS Relapses
Although most children generally tolerate corticosteroids well, they may experience some side effects, such behavior changes, increases in blood sugar levels, and 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. IVIG is an IV medication composed of antibodies from healthy blood donors, and helps reduce the immune response in MS. According to Children’s Hospital of Philadelphia, IVIG is not typically the first treatment used for an MS relapse, but may be used in certain situations. RELATED: True or False: Test Your Knowledge About Multiple Sclerosis
Additional Parts of the MS Treatment Plan
Any treatment plan for children with MS should also include physical, occupational, and speech therapy. These can be helpful in improving muscle strength as well as balance and coordination. RELATED: Rehabilitation for People With MS 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 be in regular communication 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. “Also, it’s quite critical that kids exercise, stay engaged with friends, and participate fully in school.” Yeh says, “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. “Because maintaining a healthy body weight and keeping active are also important,” Yeh continues, “exercise physiologists, nutritionists, and dietitians can help us when needed. Social workers and nursing staff at SickKids play important roles in the care of families of children with MS as well.” Ultimately, planning your child’s MS treatment should include discussion of 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. 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. And in 2021, they offered virtual adventure camps for teens ages 13 to 17 who have a parent with MS. The NMSS operates online support groups for kids, teens, and people with their twenties. Krupp knows patients who have grown up to have successful careers and start their own families. “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.” The NMSS website has information about pediatric MS, a search tool for finding a pediatric neurologist, two virtual self-help groups for kids and teens with MS, and a downloadable handbook for parents of children and teens with MS. Oscar the MS Monkey Oscar hosts a Zoom call twice a month for teenagers with multiple sclerosis and similar diagnoses and holds camps and retreats in Minnesota for teens, young adults, and families with a child with MS. Oscar’s website has a listing of pediatric MS centers of excellence. Pediatric MS Alliance The Pediatric MS Alliance provides a way for parents of children with MS to connect and support each other, primarily on their private Facebook page. Learn About More Multiple Sclerosis Resources
