Families of Children With MS Struggle With Diagnosis Delay, Tolls of Treatment

Multiple sclerosis (MS) was once thought to only affect adults, which meant it often goes undiagnosed for a long time in young children who seem to develop disabling symptoms. Families with young children who develop MS experience stress and frustration during the delay before their children are diagnosed, according to a new paper published in Journal of Child & Adolescent Trauma.

The authors interviewed 21 sets of parents of children with MS who were recruited from 2 pediatric MS centers.

“Many of these kids went through a diagnostic odyssey where they would go from pediatricians to emergency rooms to other pediatricians, and it could take weeks to even get the diagnosis that they had MS,” Theodore Cross, PhD, senior research specialist in social work at the University of Illinois and coauthor of the study, said in a statement. “Meanwhile, their bodily function is off. They’re suffering from fatigue. Their vision and mental processes may be affected. They have no idea why and no diagnosis to explain it.”

Children with MS, who represent only 3% to 10% of patients with MS in the United States, often present with different symptoms than adults. The diagnosis of pediatric MS is complicated by symptoms like vision changes and memory and attention deficits. Some of the parents in the study noted that they didn’t initially realize their children’s symptoms were indicative of a serious illness.

One of the coauthors, Lisa Duffy, a nurse practitioner certified in MS nursing who works at Massachusetts General Hospital, explained that the primary symptoms for children can be that they are failing classes or their grades are dropping.

Families surveyed explained that they had to deal with cognitive and physical effects at school and the parents felt overwhelmed by managing diagnostic procedures, doctor and hospital visits, and working with multiple healthcare providers.

In addition, the researchers found the parents were distressed by seeing their children receive injections once or twice daily that left marks and the accompanying side effects of the therapies.

“Despite the stresses of the diagnosis and the demands of treatment, these families benefited from disease-modifying treatments, and most students had adapted successfully to the demands of school,” Cross said. “Supported by their peers in the community of families with pediatric onset MS, and with the help of the National Multiple Sclerosis Society, these families demonstrated considerable resilience in dealing with the practical issues of living with the disease.”

Reference

Cross TP, Shanks AK, Duffy LV, Rintell DJ. Families’ experience of pediatric onset multiple sclerosis [published online January 8, 2019]. J Child Adolesc Trauma. doi: 10.1007/s40653-018-0243-7.