Pediatric nurse practitioner Maria Milazzo, Ph.D., PNP-C, worked in the department of neurology and Lourie Center for Pediatric MS at Stony Brook Children’s Hospital in New York, for almost 20 years. Today, along with seeing patients once a week, she is the director of Teen Adventure Camp, a summer program for teenagers with MS. We asked Milazzo about the ins and outs of working with this under-recognized population and their families, and what’s she’s learned in her two decades of caring for kids with pediatric MS.
How has your work with children evolved as the diagnosis of pediatric MS has become better understood?
I’ve seen huge changes in terms of what’s available, from having kids who know absolutely no one else with MS, with no idea about treatment, to moving to a place where there are networks of kids and parents, and multiple options for medicine, and people talking about it. In the old days, when we said a child had pediatric MS, a lot of pediatricians and other clinicians would say, “They can’t have that. It doesn’t exist.” It’s been amazing to see over the past 15 or 20 years how the conversation has changed. Pediatricians no longer argue and say, “You’re wrong.” The diagnosis is no longer such a surprise.
Pediatric MS most often occurs in teens, but you’ve seen it in really young kids, too, right?
I remember a very young child we diagnosed around the age of 2. Her symptoms started maybe as early as 1. She was at daycare and her dad came to pick her up. She heard his voice and started walking toward him—and then walked right past him! She had total loss of vision. Her parents took her to see the pediatrician, then to the hospital for neuroimaging. After treatment she regained her vision, as far as we could tell. Then, a year later, it happened again—total loss of vision. That’s when she was given a diagnosis of MS. In a really young kid we have to be extremely careful. We have to rule out every other cause, because that kind of diagnosis is really unusual.
What are some day-to-day challenges of working with these kids?
Because it’s such an under-recognized diagnosis, there are a lot of challenges navigating all our systems. Navigating the schools, for instance—it can be hard making them understand that this is a real diagnosis. Often, the school doesn’t want the child in class, or says a kid can’t do gym. They don’t understand the relapsing-remitting nature of this condition. A kid can look absolutely fine one day, and the next day have significant problems that will make him miss school, or not be able to do P.E. So we help schools understand more about the condition, in order to allow these kids to do as much as they can.
How do you help families with older kids?
We work closely with colleges to make sure kids are getting access to the services they need. For instance, thinking about what kind of dorm they’re in, one that’s closer to the center of campus, with access to transportation. Also, connecting these kids with a medical provider close to school, so if they get in trouble with symptoms they can get care right there, as opposed to going to their neurologist at home. Or, if a kid gets monthly infusions, we help find a center that’s close so it doesn’t disrupt school life to get treatment.
What are some of the bigger picture issues you’ve seen these kids face?
You know, kids with MS do get sick. Often, their pediatricians write it off to MS. Then they go to see their neurologist, who says, “You need to go see your pediatrician.” That’s where being a pediatric nurse practitioner really helps. I can tell their families, “This really is just a cold. And you can treat it as a cold. This isn’t a relapse.” Or, if a kid is having some neurological symptoms, I can help with that, too. Having a clinical background in primary care is helpful in this specialty area to tease out what’s normal development, or normal illness, and what might be more worrisome from a neurological standpoint. It’s a continual concern for kids. They say, “Every time something goes wrong, my doctor blames my MS! Why can’t I just have a cold?”
How do you help kids connect with one another beyond pediatric MS centers?
We started our first summer camp for kids with MS 16 years ago. We wanted to create a community. We began with a very small network of kids. Over the years it’s grown. It’s a week-long program. They come from all over the country, with international children, as well.
The focus is to foster community, and to promote physical activity and adventure. In the past, the camp has involved a lot of kayaking, sailing, and outdoor adventures, with physical therapists on hand who have expertise in the areas of disability and sports. Kids push their limits and do things they’ve never done before in a setting with other kids with MS.
What else do kids get out of the camp?
At camp there are a lot of conversations about what’s it like to be a kid with MS. All the adult volunteers have backgrounds in MS. We’re not listening in on every conversation, but we are available to serve as reference points to make sure the information kids are getting is good information. The goal is for kids to come together in an outdoor space to find community, with opportunities to push their physical limits. And it’s very, very fulfilling for me to be a part of that.
What is one of your best memories working with kids who have this disease?
There are millions of stories, because there so many wonderful kids. One of the very first kids I got to know was an 11-year-old boy with significant relapses during the first years of his life. One day he shared with me how sad he was each year when new kids arrived at camp, because he wished that he was the last kid to be diagnosed. He didn’t want MS to affect anybody else. Now he’s in his late 20s, graduated from college, married, and working as a professional. I find great joy in having watched him grow up into this really outstanding young man. He and his parents faced significant challenges along the way, and they stuck together and got through them.