To begin, read this NORD article from Dr. Micheal Pranzatelli. Dr. Pranzatelli recently retired, but he had seen more OMS patients than any other doctor. His article is an excellent overview of OMS and how to tackle the disease. You can find the article at https://rarediseases.org/rare-diseases/opsoclonus-myoclonus-syndrome/
Learning that you or your loved one has OMS can be very troubling. We know. We’ve been there. To properly fight OMS, you need to prepare for a long fight. This is a marathon you are running, not a sprint. Begin with educating yourself about OMS. Search websites, Facebook forums, read research publications, and learn about OMS. We have listed many good resources for you.