Brenda L. Banwell, MD: Children who have been recently diagnosed with multiple sclerosis may need more frequent visits to their doctor and team than after they’ve been living with the diagnosis for a longer period. This frequency of visits is also personalized. We see patients as often as they need us. In general, after the diagnosis of multiple sclerosis, I will typically see a child and family back, if I can, within 2 to 3 weeks for a second visit. It has been my experience that when you give a serious diagnosis, during that first visit, no matter how long you spend, only a portion of what you talk about actually gets absorbed by the family. It’s overwhelming. And so, we have the family come back in a short period of time to go over things again, answer questions they didn’t even think to ask the first time, and to provide support.
After that, and particularly once we start treatment, I will often see my patients every 3 months in the first year, and then at a minimum of every 6 months thereafter. The frequency of MRI [magnetic resonance imaging] scans in the first year, for me, is every 3 months. And then, if we start a new therapy, I would typically like to have an MRI right as I start the new treatment, and then again, at a minimum 6 months later. And we call that the re-baseline. In other words, at that 6-month time point, I view that as a new scan that tells me this person is on medication. Obviously, I’ve checked that they’re taking their medication. And then from that point forward, I use further MRI scans to contribute to how well a particular treatment is working for that child, both based on whether they’ve had any relapses, clinically, but also whether the MRI shows any new disease activity over time.
Treatment of multiple sclerosis is different for different people. In the future, one of our goals would be to personalize the selection of a given treatment based on, ideally, a test of a person’s individual immune system to determine what medicine would be the best first choice for them. We are not there yet. Given that, we start most patients at this point either on fingolimod, because it is approved in North America for first-line therapy for pediatric multiple sclerosis—as I mentioned, it is the only current FDA-approved first-line therapy—or interferon, or glatiramer acetate. Those would be the most common 3 medications that would be used first. After a period of treatment, and we generally state 3 to 6 months, making sure that the person is, indeed, taking their medicine, we then reevaluate from that point forward, both clinically and by new MRI scans, to be sure that the treatment is effective.
A recent study in the United States and several in other countries show that at least half of patients do not respond fully to their first medication. Now that, I want to preface, was when most treatments were interferon or glatiramer acetate.
The recent PARADIGMS study showed that fingolimod reduced relapse rates by 82% compared to interferon. So we don’t really know yet how many children are going to fail fingolimod in the real world. Obviously, relatively few failed it during the trial. So that is going to be information we’re going to learn now that the medication is approved.
For some patients who come in with severe attacks, who experience multiple attacks in a very short window of time—in the first several months—many of us move forward with what we would call higher potency therapies earlier. That is a highly individualized decision to make. In those children, or teenagers more commonly, the treatment that one might use early could include Tysabri. We don’t have easy access at this point to ocrelizumab, because of it having been approved in adults and not yet in children. But rituximab, which is a very similar medication, is one that is used for some patients. As we learn more about the other therapies that are being studied, they may come into play in the future.