Pediatric MS: Support for Patients and Caregivers

Brenda L. Banwell, MD: The care team for children with multiple sclerosis [MS] includes their diagnosing neurologist, but sometimes, even more importantly, it includes their nursing staff. We are lucky to have MS-trained nurses with whom we work on a regular basis. We have a social worker who is an incredible and effective advocate for our patients both in their school, in the community, and one-on-one, in terms of a support resource. We have a neuropsychologist who helps us with cognitive evaluations and linking formally with the school to make sure that we have educational plans that make sense for the child.

Happily, we rarely need our occupational and physical therapists, although they’re standing ready to help when we need them, simply because most of my patients recover very quickly from their actual relapses, physically. When they have a relapse, we may need the full therapy team. But subsequent to recovery, we often don’t need occupational or physical therapists on a daily basis, which is very helpful. But they are available when needed.

We have a psychologist and, when needed, a psychiatrist, who will help with the emotional side and psychiatric comorbidities. And increasingly, we’re recognizing other aspects of wellness that need to be addressed. Multiple sclerosis risk is increased by obesity. A healthy diet and exercise are components of health that I think should be present in everyone, but certainly, we want to make sure they are optimized in patients who already have another disease, like multiple sclerosis.

We make sure that we look at nutrition and a healthy well-balanced diet. We advocate for vitamin D, which is an important supplement that we think is relevant in that it contributes to MS risk. Several studies have shown that, and early evidence suggests that maintaining a healthy vitamin D level in the bloodstream by taking supplemental vitamin D on a daily or weekly basis may have a benefit to reducing relapses. That is an early observation. We can’t prove that just yet, but it makes sense that having vitamin D nutrition is good for overall health.

Lauren B. Krupp, MD: There needs to be more support groups. There are some groups that are organized through different MS centers for parents, particularly. There are also some groups that have been organized through the National MS Society for those in the United States. For the kids, it’s a bit challenging because to get teenagers to want to go to a support group is extremely difficult. One exception is a teenager who organized, in her school, a support group for people with autoimmune disease. That’s a fantastic example of a youngster taking on the drive to organize and support one another. We, at NYU Langone Health, have put together a peer-based mentoring support group where people who were diagnosed with pediatric MS and have now gotten a bit older can help support one another with dealing with the diagnosis, adapting to it, accepting the challenges of it. They have someone else who has gone through the same thing to talk to. So that’s another mechanism. And then in different areas of the country, there are camps out there for varying periods of time, either for families or just the kids.