Pediatric MS Can Be ‘Diagnostic Odyssey’

A post in one of the MS social media groups I follow recently asked whether kids can have MS. The writer was worried about her 3-year-old.

One commenter replied that her son was diagnosed when he was 9. But, she wrote, his symptoms actually began to appear when he was an infant. A 2018 study by the Cleveland Clinic reported a case of MS in a child as young as 2.5 years old. It’s not an easy diagnosis to make in a youngster. And it’s not an easy process for the children or their parents.

A difficult diagnosis

Theodore P. Cross, a researcher at the University of Illinois, has studied the families of children diagnosed with pediatric-onset MS (POMS). In an article on the university’s website, he says parents know that something is wrong with their child but their doctors can’t pin it down.

“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,” Cross said, according to university education editor Sharita Forrest. “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.”

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Children often have symptoms that are different from adults. Some of the parents in the study said they didn’t initially realize their children’s symptoms might indicate a serious illness.

Sometimes those medical problems reveal themselves in the classroom. According to study co-author Lisa V. Duffy, in some cases, those problems at school are what pushed doctors toward an MS diagnosis. “Many times we would see patients where their primary symptom was that they were starting to fail classes or their grades were really dropping, and somebody picked up on it that way,” Duffy said, according to Forrest.

Tough on the entire family

Cross and his colleagues studied 21 couples whose children had a confirmed diagnosis of POMS. Unsurprisingly, their study found that these families were overwhelmed by juggling visits to doctors and hospitals and were stressed by the impact of MS symptoms on their children. Some parents were uncomfortable seeing their children injected with a disease-modifying therapy, and some were uneasy with the side effects those medications caused.

According to study co-author David J. Rintell, “it was very clear that the parents were suffering gravely. They were very worried and concerned about their kids, as one would expect.”

What’s being done for POMS?

Over the past several years, healthcare professionals have awakened to the fact that kids can have MS, too. And they’re beginning to address the unique problems that MS holds for both these children and their parents. The National MS Society has a section on its website devoted to POMS. So does the MS Trust. The Children’s Hospital of Philadelphia has a webpage and a specialty clinic.

The Pediatric MS Alliance (PMSA) has a membership of over 500, made up primarily of the parents and caretakers of young MS patients. The PMSA has a closed Facebook group and a website. There’s also “Oscar the MS Monkey,” who has a Facebook page devoted to children with MS.

Did I have POMS?

I was diagnosed when I was 32. I never thought about the possibility that I was showing MS symptoms as a youngster, but maybe I was. In high school, I would sometimes doze off in class. I had a high IQ, but I never had high grades. And I had trouble memorizing things. Were these early signs of my MS future? Well, even if they were, there wasn’t a whole lot that could, or would, have been done about it back in the 1960s.

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