Understanding Pediatric Onset MS
Multiple sclerosis is usually considered an ailment that affects adults. And that's largely true. But nearly 5% of cases occur in children. For these kids, a pediatric neuroimmunologist can provide the best care. But until recently, these specialists were in short supply, meaning families often had to travel across state lines.
Nick Brenton, MD, is a pediatric neuroimmunologist at UVA Health Children's. His expertise includes: pediatric multple sclerosis, as well as myelin oligodendrocyte glycoprotien-associated disease (MOGAD), acute disseminated encephalomyelitis (ADEM), optice neuritis, transverse myelitis, and autoimmune encephalitis.
We talked to him about why this patient population became his focus, when referring providers should consider a pediatric neurologist, and how a coordinated team approach can improve outcomes for these kids.
What made you decide to focus on pediatric neuroimmunology?
When I was in training, there were very few pediatric neuroimmunologists within the country and many of our patients in Virginia would have to travel across state lines to seek specialty care. I was drawn to this field by the widespread need for this expertise and the ability to make a timely and important impact on patients while advancing our learning about these relatively rare disorders.
What’s your favorite thing about working in such a specialized field?
Working with the patient and their family. Many of the disorders I diagnose and treat are chronic conditions. This allows me the opportunity to have a longitudinal care partnership with my patients. As a result, I’ve been able to witness many of my young patients grow into adulthood – and it’s so rewarding to see them living their best lives.
When should referring providers refer to help their patients with early detection and diagnosis?
Many of the conditions that I treat manifest with neurological symptoms that persist for more than 24 hours and often don’t improve/resolve for weeks or months. These symptoms could include blurry or double vision, weakness of the arms/legs, sensory changes in the body (numbness or paresthesia), imbalance, and/or mental status changes. Recognizing that these symptoms could represent onset of an autoimmune CNS condition is the first step toward detection and ultimate diagnosis.
What risk factors should referring providers be on the lookout for?
For MS, there is a small genetic component – thus, kids who have a sibling or parent with MS are at higher risk for this disease than the general population. Other risk factors for autoimmune diseases of the CNS include vitamin D deficiency, obesity, early exposure to Epstein-Barr virus, and smoking (first or second-hand).
What’s something about multiple sclerosis you wish every referring provider knew?
MS is often thought of as a disease of adulthood – but in fact, 5% of all cases have onset in childhood. Improved long-term outcomes are linked with early diagnosis and early initiation of effective disease modifying therapy.
What’s one thing that every primary care doctor could start doing today to help their patients?
Recognize that these disorders can affect children and refer any patient with new neurological symptoms that persist for more than 24 hours without resolving (even if they are mild). You would be surprised at how many teens ignore loss of sensation in the arms/legs because it doesn’t severely limit their day-to-day activities.
When should providers refer pediatric patients to neurology?
A pediatric neurologist should see any child/teenager with new neurological symptoms that persist for more than 24 hours without resolution. I often see these patients in my clinic when there is a suspicion for an autoimmune etiology to these symptoms. Demyelinating lesions on an MRI are often one of the strongest clues to diseases like MS, MOGAD, ADEM, etc. Many of my encephalitis patients have rapidly worsening mental status changes that prompt a visit to the ER – and I consult on many of these patients during their work-up for an autoimmune etiology.
How do you approach working with referring providers?
I enjoy collaborating with referring providers on the long-term management of these patients. I hope to serve as a resource to their primary doctors (or to their local neurologist) and try to reduce the burden of travelling to UVA for subspecialty care as much as possible.
How do you handle meeting a newly referred patient?
My team works hard to get all of the information (clinic/inpatient visits, imaging studies, and/or laboratory/spinal fluid testing) prior to seeing the patient. I review all of this information before I see the patient, so I can spend the most amount of time with them answering questions and putting a plan for treatment and follow-up in place. At the beginning, I try to clarify goals of the visit so we can maximize the time we have to make sure that those goals are met. If needed, I also try to “debunk” common myths about their particular disease as there is a lot of misinformation on the internet.
What’s one thing UVA Health Children's can offer these patients that you think makes their experience better?
For my subspecialty, we have a wide array of related providers that make up a “care team” for each patient. Physical/occupational therapy, neuropsychology, nursing care coordination, specialized pharmacists, and infusion facilities are often needed in many cases. UVA can serve as the “one-stop shop” for all aspects of a child’s care. Further, we have clinical treatment trials available in addition to research participation opportunities – which is aimed to better understand these pediatric diseases and the impact that they may have in the long-term.