The number of children (under age 18) with MS in the U.S. is estimated to be 8,000 to 10,000. As with adult MS, diagnosis can be difficult. Children don’t always understand that they should talk about what they are experiencing, or they may have difficulty describing the symptoms they feel, which can compound the problem.
Most symptoms of MS seen in children are similar to those seen in adults and can vary from child to child. These can include optic neuritis, motor weakness, balance problems, sensory disturbance, loss of coordination, bladder dysfunction, or problems related to brainstem involvement, such as facial numbness.
Yet some differences exist. At presentation, children tend to have more brainstem and cerebellar symptoms, encephalopathy (brain disease that can lead to an altered mental state), or optic neuritis, than do adults. Additionally, children with MS are more likely than adults to have seizures (5 percent versus 2 to 3 percent), especially those under the age of six.
Some studies have reported a higher relapse rate in children than adults, but symptoms appear to remit more quickly than in adults, generally in two to four weeks.
Whether or not symptoms are treated often depends on how much they interfere with daily functioning. Mild symptoms such as tingling and numbness are generally not treated; however, it is still important to discuss and explain them to the young person with MS. (A pins and needles sensation can be frightening if not understood!)
Symptoms that affect performance at home and school require more intervention. For example, about 30 percent of children report fatigue that is so severe it disrupts their ability to function. Identifying the source of the fatigue, adjusting medications, and teaching energy-conservation techniques are ways to manage this symptom. Modafinil and amantadine are two drugs which have been used to combat fatigue in adults and children with positive results. In May 2018, the U.S. Food and Drug Administration approved Gilenya (fingolimod) for the treatment of children and adolescents from 10 to less than 18 years of age with relapsing forms of multiple sclerosis, making it the first disease-modifying therapy approved for these patients. This expands the age range for Gilenya, which was previously approved for patients aged 18 years and older with RMS.
Cognitive impairment is another symptom that requires management. Not only can it harm academic performance in a young student, but it can also hinder self-confidence and self-esteem. Educating school personnel, providing special accommodations (such as reduced work load because of fatigue), and teaching compensatory strategies to assist memory loss are all strategies that have been effective in minimizing the effects of cognitive impairment in children.
The psychosocial effect of MS on a child’s physical and emotional well-being should not be underestimated. Early assessment leading to individualized intervention and support is vital in delaying disease progression and aiding in adjustment.
Studies suggest 2 to 5 percent of all people with MS have a history of symptom onset before age 16. As doctors become more familiar with recognizing the symptoms of MS in children, it is speculated that the pediatric MS population will increase.
More information about pediatric MS is available in the MSF’s booklet, Pediatric MS: When Children Have Multiple Sclerosis. To request a copy or copies, contact us by email: support@msfocus.org or call our Program Services Department at 888-MSFOCUS (673-6287).