Transverse myelitis (TM) symptoms in young patients frequently start the same way: complaints of back pain, which parents often don’t take very seriously at first. But as the day passes, it becomes clearer that the problem is far worse than a simple muscle ache. Soon enough, symptoms progress and cause weakness in the legs or arms, and the patients can’t urinate or move their bowels. By the time they arrive at the local emergency room, many can’t walk.
No one is sure how many pediatric patients are diagnosed with this condition each year in the United States, says neurologist Carlos Pardo, who directs the Johns Hopkins Transverse Myelitis Center. Johns Hopkins is the region’s top tertiary referral hospital for this condition, and the center is one of the few dedicated to treating TM in the world. Pardo and colleagues see dozens of cases in children each year.
Created in 1999, the center provides a comprehensive approach to diagnosing, treating and managing TM in patients of all ages, says Pardo’s colleague Michael Levy, who specializes in treating neuromyelitis optica, a TM-related condition.
The first step when a lot of patients arrive at the center is to provide an accurate diagnosis, says Levy. Many conditions, such as spinal cord stroke or metabolic problems associated with mitochondrial disease, can masquerade as TM, which is characterized by inflammation in the spinal cord that damages the myelin sheaths on nerve fibers. In children, cases of acute flaccid paralysis linked to respiratory viruses are also of great concern, as patients present with similar symptoms to those of TM. To rule out other causes, the center has a close relationship with Johns Hopkins’ Division of Neuroradiology, which provides diagnostic procedures, including spinal angiography, CT myelography, MRI and others, to gather clues as to the cause of patients’ symptoms.
Because time is of the essence in treating TM—the longer inflammation persists, the more damage it does to the nerve fibers—some patients are treated with intravenous anti-inflammatory drugs even before doctors are certain of the diagnosis, Levy explains. Plasmapheresis is another common treatment. By exchanging plasma, Levy says, doctors can remove the offending immune factors from patients’ bloodstreams and slow an ongoing attack. Although 60 percent of cases are idiopathic, the remainder are thought to be caused by autoimmune disease that may lead to future attacks.
Once they have inflammation under control, Pardo says, the center’s job isn’t finished. Over the past several years, he’s worked to assemble a comprehensive team to care for patients as they recover, a process that can last months or years, or can be ongoing for patients with chronic disease. For example, pain specialists associated with the center are available to help ease the discomfort associated with this condition. Physical and occupational therapists provide aggressive rehabilitation to help return lost function. Ophthalmologists in Johns Hopkins’ Wilmer Eye Institute help care for patients with ocular issues. And because depression is also associated with the condition, psychiatrists and psychologists also work with the center to help maintain patients’ mental health.
After acute care ends, Pardo says, the center can continue to manage patients’ care through regular checkups. Providers remain available by phone or email long after patients are discharged from the clinic.
“Like our adult patients, our goal for children is to get them back to as normal a life as possible,” Pardo says. “We want them back to school, hanging out with friends, doing sports, whatever they enjoy. Our experts can help get them there.”