Stress, Uncertainty Faced By Families of Children with Multiple Sclerosis

David J. Rintell, EdD

Families of children with pediatric onset multiple sclerosis (POMS) often face a lengthy odyssey to get to an accurate diagnosis, but a new study finds those families have a softer landing post-diagnosis when they have access to support groups and community resources.

Between 2.7% and 10.5% of all MS cases are categorized as pediatric-onset. However, it can be difficult for frontline physicians like pediatricians to identify and distinguish POMS from other neurological and non-neurological conditions.

“What happens often is that there’s an onset of symptoms that might be some numbness or some tingling, and it’s transitory, so it goes away after awhile,” study co-author David J. Rintell, EdD, head of patient advocacy at the biopharmaceutical firm BridgeBio, said. “I think that’s part of the reason that with children—and this happens to adults as well—it can be missed.”

Rintell noted that most early cases of MS are relapsing-remitting, meaning symptoms come and go.

In an effort to raise awareness of POMS and help better address the needs of patients’ families, Rintell and colleagues interviewed 21 sets of parents of children with MS, asking about their experiences. The families indicated high levels of anxiety over the symptoms and the uncertainty about the diagnosis. They also were unsure about the impacts of disease-modifying therapies and reported difficulties with the injections of MS therapies.

Families also reported facing challenges with the necessary adjustments at school and dealing with the extra demands of caring for a child with POMS. The good news is that these families can benefit if connected with support groups and resources.

“There’s a need for programs that help parents meet each other and for a way to guide people through the initial stages of diagnosis,” Rintell said. “And the as the article describes, most parents then seem to be able to get to a point where they feel like they have a handle on it and the stress of the situation starts to reduce just by the natural process of accommodating to change.”

Rintell said he hopes the paper helps to spark more conversation and awareness around POMS. In the paper, the investigators urge groups like the National Multiple Sclerosis Society and other advocacy groups and professional organizations to better educate healthcare professionals, including pediatricians, emergency physicians, and ophthalmologists about the existence of and symptoms associated with POMS.

Staff in pediatric neurology departments ought to be trained to anticipate and meet the needs of families facing a POMS diagnosis, the authors write.

“Pediatricians are probably good at documenting neurological symptoms,” Rintell said, ”but they may not suspect MS and may choose a wait-and-see attitude rather than saying, ‘This can be serious; we need to look into it and we need to get a diagnosis.”

Rintell noted that POMS is rare; only about 1 in 800 to 1 in 1,000 people will develop MS, and only a small percentage of those people will develop symptoms as a child.

“That makes it a very unusual incidence in any practice of a pediatrician, or any child neurologist, really,” he said.

Still, if the physician is aware of POMS on the rare day that a child with the disease shows up in her waiting room, the physician will be better able to facilitate a quick diagnosis and links to support.