Early in 2014 Edward began exhibiting neurological symptoms (tremors, weakness, erratic eye movements) which quickly advanced until he could no longer walk, crawl, sit, or even hold his head up. He was diagnosed with neuroblastoma (cancer), and a tumor was removed from the nerves in his left shoulder.
The cancer has never come back, but Edward's immune system continues to attack his brain with the antibodies it developed to fight the cancer. This autoimmune condition is called opsoclonus myoclonus syndrome (OMS), and he continues to suffer from varying levels of the neurological symptoms we first noticed nearly two years ago.
He receives infusions of immunoglobulins (IVIg, a blood product that gives him other people's immunity) every three weeks to help control the OMS symptoms, and is currently in the middle of his third round of rituximab after a recent relapse. There is no cure for OMS, and all children respond differently to treatment.
Very little research has been done on OMS, so we don't know much about Edward's future. Most kids eventually come out of the active phase of OMS, and no longer require immunosupression to keep their immune systems from attacking their brains. Some kids appear to recover completely, though they always carry the possibility of relapse. Other kids are left with cognitive, behavioral, speech, and/or motor deficits. Our goal is to try to minimize the damage to the brain during this active phase of the disease, in hopes that Edward will lead a normal life in the future.
Updated Jan 28, 2016