Optimizing Care in Pediatric Multiple Sclerosis

Brenda L. Banwell, MD: I view the future for pediatric multiple sclerosis [MS] as being pretty bright. There are numerous therapies that have been approved for adult onset disease, and while we have only 1 large study completed, it was incredibly exciting to see that fingolimod was arguably even more effective in pediatric multiple sclerosis patients than what we saw in the pivotal trials for adults.

That provides optimism that early, effective treatment of multiple sclerosis in children and teenagers will have a dramatic effect on the frequency of relapses. Every relapse is an experience no child wants. And so, every relapse we reduce is an improvement in their quality of life from my point of view.

Longer-term safety and the impact of this disease on cognitive health, emotional health, vocational achievement, and the impact as they become independent young adults is the responsibility of pediatric and adult MS providers. I think the future will require and be benefited from international collaboration to achieve that.

We need to advocate for our patients. Not every medication will go through a therapeutic trial, but some of those medications may be very important as options for a given child or teenager and providers need to have the tools to advocate to use those therapies when appropriate.

Just as we need the advocacy and tools, we also need the knowledge and the responsibility to prescribe medications with a thorough understanding of how they work, their safety, the pretreatment monitoring, and the post-treatment monitoring to keep our patients safe.

My advice to community practitioners is to partner with your regional experts. Reach out to the adult MS providers who probably have a greater experience with the medications that might be prescribed. Consider a second opinion to be sure that the child or teenager does, indeed, have multiple sclerosis, and then consider shared-care options where a regional expert may provide an annual visit and then partner with a community physician to share care, both optimizing expertise and minimizing travel.

Reach out to your regional and national MS societies in the United States, Canada, and around the world. They are experts in the disease. They are experts in advocacy. They are certainly a support pipeline for parents and for the children and teenagers who are living with multiple sclerosis, and are an invaluable resource to our MS community.

And finally, if you’re a provider, please join the International Pediatric Multiple Sclerosis Study Group. When we know who you are we can send materials. You can be brought up-to-speed on new information. We can share best practices, and we can learn from each other.

Those are my overall pieces of advice. My closing comment would be that I think the opportunity to meaningfully alter the relapsing disease course of pediatric multiple sclerosis is incredibly high. I think our patients are going to do a great deal better than perhaps we might have seen in the years past when treatment was far less available.

Lauren B. Krupp, MD: The treatment of MS is only going to get better. There used to be no treatment. Now we have over 15 different medicines. The medicines are getting easier to take. They used to be shots. Now there are pills and infusions that are not very frequent. Ideally, we want 2 things. We want a medication that you take for a period of time—and some of these medicines are even now available—and then you’re done and you don’t have to take them again. Maybe 10 years later you have to do a little something, but you want to have a long period of remission. But you want it to be safe. That’s critical. So effective but safe. And then, the second thing: I think 5, 10, maybe 15, I don’t know exactly how many years it will take, we will get a drug or a medication that will promote remyelination and repair. That I’m sure of, and that will make a huge difference. That will be really important and probably be most effective if also started early. Then we’ll be looking at a situation where even people who have suffered some injuries can have hope that they can have better recovery and better function.

My advice for community neurologists who see kids is to recognize that although uncommon, MS in kids can happen. Number 2: The MRI [magnetic resonance imaging] is a very powerful tool to help with the diagnosis. Number 3: There are a tremendous amount of mechanisms to get help. The National MS Society has a difficult-case webinar that happens at least once a month where individuals can present cases and get help from very senior-established pediatric MS experts. The other thing is that most pediatric MS experts are more than happy to work in conjunction with community neurologists and maybe see the patient once a year, once every couple of years, to guide therapy that’s being given more locally if a community neurologist understandably feels uncomfortable with a rare diagnosis that they’ve never seen before or have only seen a few times.