Health Update - Parry Romberg & Trigeminal Neuralgia
Here is the history - (if you want to skip this scroll down to the next bolded section) I don't post a lot about my son's medical condition. He was diagnosed with Parry Romberg Syndrome at 5 years old. I knew something was wrong starting at 2 1/2. It took over two years and lots of doctors to get a diagnosis and start treatment. Because PRS is a rare disease, ( Click the link to learn more about Parry Romberg Syndrome .) there hasn't been much research or treatment history for this condition. We were so fortunate to find a doctor who happened to read an article about it, start some research and figure it out. Beginning treatment at age 5 slowed the atrophy and scarring that characterizes most PRS patients. His symptoms and pain went into remission at age 5 with the treatment of steroids and low dose chemo. He went for nearly 4 years with check-ups and no medication. We were so thankful! The remission ended at when he was 9 with a stroke-like episode out ...
