Lauren B. Krupp, MD: There are many challenges in treating people with MS [multiple sclerosis], and there are particular challenges in treating those with pediatric MS. Depending on the age, the challenges are different. In younger children, there’s a tendency to do what your parents say before entering the sort of rebellious phase, but there are a lot of tears and anger at having to get stuck with a needle for blood tests that are necessary to take proper precautions in monitoring therapy. Some children have trouble swallowing pills, and some of the MS therapies are oral medications.
The other challenge is understanding, for the parents, and then as the children get older, the kids as well, that the most important thing in MS is modifying the disease course in such a way that in the future you’re going to do well. These treatments don’t make you feel stronger or better right now—the disease modifying therapy treatments—but they alter the course of the disease. So, when people have MS as adults, for example, with a relapsed and remitting beginning and they never get treated for it, after 5, 10, 15 years they can develop the progressive phase. That can happen to kids, too, not during their pediatric years but as they reach adulthood and later on. So you want to avoid a progressive neurologic situation where you will have trouble walking, trouble seeing, trouble using your hands.
Understanding that this is treatment for preserving what you’ve got is a lesson that sometimes can be challenging for parents and children. For teenagers who want to be like everyone else, it’s very difficult to have to take a medication every day, or a medication twice a day, which is a pill, or to have to go to an infusion center and get an IV [intravenous] medication either every 4 weeks or every 6 weeks, or a different medication less frequently. These are serious medicines. They have serious adverse effects, but they’re also very effective and very important to control the disease.
Brenda L. Banwell, MD: Relapses for anyone are frightening. You wake up one day and you feel, perhaps, that your vision is a little bit dim. Over the course of the next several hours it worsens. You may then have pain with eye movement. By the end of a day or two, you may have significantly reduced vision in 1 eye, for example. That experience for anyone, let alone a child, is of course something we would want to prevent.
My first goal is to provide meaningful therapy to reduce the rate of relapses in my patients. When doing so, I want them to be normal children and healthy teenagers. I want them to play sports. I want them to be part of the band. I want them to do well with their homework. I want them to achieve in whatever activities are meaningful to them and their families. And so, I want to be sure that we provide therapies that are tolerated well, that do not harm their quality of life, and that, of course, are effective, but are also liberating. My goal for all of my patients is that they spend most of their days forgetting that they actually have multiple sclerosis.
It’s important that we advocate for our patients. We have to work with their schools. If the child has any cognitive impairment, we need to make sure that their education is optimized to improve their learning. Any chronic disease has an impact on how we feel. Emotional anxiety and depression can happen to anyone, but about a third of teenagers with multiple sclerosis endure either anxiety, or depression, or both.
And finally, multiple sclerosis affects the family. We have recently looked at the quality of life of parents and found that they report that having a child with a serious disease impacts them. It impacts how they feel, it impacts their health, and it impacts their emotional health. We are now about to embark on a more formal study of how having a brother or a sister with multiple sclerosis affects other children in the family. So I think the take-home message is, in addition to maximizing a medication, we also invoke a team approach to provide support, counseling, advocacy, and really put together a program for each family that addresses the varied needs of everyone in that family.