Sarah initially was admitted at Children’s Health and we were consulted when it was discovered that she had acute flaccid myelitis, a rare type of transverse myelitis thought to be triggered by a viral infection. We’re one of only two dedicated transverse myelitis centers in the world, and we’re the only one with a multidisciplinary focus on children.
Sarah needed help quickly. But I first had to have a frank conversation with her family. My recommendation for her treatment were not in strict accordance with new national guidelines from the Centers for Disease Control and Prevention (CDC). Acute Flaccid Myelitis had been recognized as a growing problem in the U.S., but the best course of treatment has been unclear.
Why Sarah needed unconventional treatment
In some people, the virus that caused Sarah’s paralysis triggers the immune system to attack the spinal cord and cause damage beyond that caused by the virus itself. When this secondary inflammation is present, we hypothesize that it can lead to devastating consequences.
Because we have seen so many young people with acute flaccid myelitis in our Transverse Myelitis and Neuromyelitis Optica Program, we have a unique perspective and experience about outcomes. At both UT Southwestern and Children’s we have access to advanced treatment procedures such as plasmapheresis, also known as therapeutic plasma exchange. This procedure exchanges the patient’s plasma for new plasma or protein in order to remove the antibodies that are attacking the spinal cord. In the setting of acute flaccid myelitis, however, the CDC recommends against it out of concern that it might worsen an underlying infection.
Nevertheless, I believed it was in Sarah’s best interest to have plasmapheresis. I discussed all the details with Sarah and her family, and I offered to arrange for second opinions. Ultimately, the decision was theirs to make, and they agreed to proceed – a decision I believe potentially changed Sarah’s life.
Sarah had a mindset to dig in and work hard. She was patient with her bad situation, and she was determined not to let it stop her.
Turning the corner
Once we started treatment, Sarah turned a corner in her recovery. She’s enrolled in a revamped rehabilitation program to accelerate physical and neurological recovery. Instead of patients doing just muscle exercises to build up strength and stamina, they also receive electrical stimulation to help the muscles and nerves “relearn” what they’re supposed to do. We are looking forward to upcoming clinical trials of novel ways to repair the spinal cords of patients impacted by inflammation.
Even with advanced therapies, so much of rehabilitation and recovery depends on the individual patient. Sarah had a mindset to dig in and work hard. She was patient with her bad situation, and she was determined not to let it stop her.
As of April 2018, we’re in the midst of a national debate about treatment standards for acute flaccid myelitis. Unfortunately, we don’t yet have definitive, clinically proven answers to some tough questions. And as much as I wish we could, we can’t simply wave a magic wand and fix our patients’ conditions. However, we can guide and coach them on their paths to recovery. Sarah has fought for a second chance, and we’re thrilled to support her during the journey.
While we recognize that Sarah’s response to her therapeutic regimen is not scientific proof that we are correct, we remain committed to the types of research necessary to prove which therapies hold the most promise for patients. We strive to be a source of support to our patients and families while learning from their experiences.
Learn more about the cutting-edge care we provide to patients with acute flaccid myelitis, transverse myelitis, and other neurologic disorders.
Sarah’s story: A viral reaction and a second chance
Read how Sarah’s therapy took her from paralysis to a new lease on life.
The Peter O’Donnell Jr. Brain Institute brings together transformative research and patient-centered care to improve the lives of patients today and those of generations to come.