OMS Manual/Chapter 1

CHAPTER 1 - About Opsoclonus Myoclonus Syndrome (OMS) Introduction (updated May 2026) If you are looking for information about Opsoclonus-Myoclonus Syndrome (OMS), you likely know of someone who is battling this disease. The patient is likely a young child, with a median age of onset between 18 to 20 months. The patient may have eyes that are shaking (opsoclonus), Shaking arms and legs (myoclonus), or may be suddenly and inexplicably irritable (Ataxia). This is OMS — a disease where the patient is often too young to explain what is happening to their body. The intent of these chapters is to share information that we know about OMS to help you on your journey. OMS is also referred to as Opsoclonus-Myoclonus-Ataxia Syndrome (OMAS), Kinsbourne Syndrome, and Dancing Eyes-Dancing Feet Syndrome. The term OMAS is increasingly preferred in recent clinical literature, and the three terms are used interchangeably throughout this manual. center|frameless|500x500px|OMS Symptoms from OMS Patient Registry START HERE: Essential Video Overview The single best starting point for newly diagnosed families is to review information developed by the OMSLife Foundation and leading OMS specialists from Texas Children's Hospital, Boston Children's Hospital, and Children's Hospital Los Angeles. Animated video about OMS: Opsoclonus-Myoclonus-Ataxia Syndrome - Symptoms, Causes, Treatment | NORD Additional authoritative written overview (updated October 2023): Opsoclonus-Myoclonus-Ataxia Syndrome - Symptoms, Causes, Treatment | NORD OMS is a rare neuroinflammatory disorder of autoimmune origin. It is characterized by rapid involuntary eye movements (opsoclonus), brief muscle jerks (myoclonus), unsteady gait or inability to walk (ataxia), and behavioral and sleep disturbances. The annual incidence is estimated at approximately 1 per 5,000,000 individuals in the general population (Orphanet). OMS affects approximately 2–3% of children with neuroblastoma. The 2022 International Consensus Statement — authored by 18 leading OMS specialists from 8 countries — is now the authoritative clinical reference for diagnosis and management (Rossor T et al., 2022).   Diagnosis and Management of Opsoclonus-Myoclonus-Ataxia Syndrome in Children | Neurology Neuroimmunology & Neuroinflammation THE FIVE IMMEDIATE STEPS AFTER DIAGNOSIS 1.     Seek guidance from an OMS specialist immediately (see Chapter 22 for a current specialist list). Do not rely solely on a general neurologist, pediatrician, or oncologist who has never managed an OMS case. Even if you feel that your current doctor is attending to the patient's needs, ask them to at a minimum, consult with an OMS specialist to help guide them through this complicated disease. 2.     Treat quickly — do not take a "wait and see" approach. Early, aggressive immunotherapy is consistently associated with better long-term outcomes. Time lost is neurological injury gained. 3.     Educate yourself about OMS. Use the resources listed throughout this manual, beginning with The OMSLife Foundation – OMSLife Foundation National Organization for Rare Disorders | NORD Dancing Eye Syndrome | OMAS | Repeated Eye Movement 4.     Connect with other patients and caregivers. See the community resources section below for Facebook, LinkedIn, and Instagram communities. 5.     Stick to your treatment plan and maintain consistent communication between your specialist and local medical team. UNDERSTANDING DISEASE SEVERITY Every caregiver and clinician should be familiar with the Mitchell-Pike OMS Rating Scale. This is the most widely used, disease-specific scoring tool for OMS worldwide. It grades six clinical domains on an ordinal scale of 0–3 each (maximum score 18): center|frame Download the full Mitchell-Pike Rating Scale from the OMSLife Foundation: Severity Scale – The OMSLife Foundation A Special Thank You The caregivers of OMS patients truly appreciate the efforts of OMS specialists, local doctors, nurses, and other medical staff who dedicate their careers to help our OMS warriors.