OMS Manual/Chapter 1

CHAPTER 1 - About Opsoclonus Myoclonus Syndrome (OMS)

Introduction

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 an average age of 18 months. The patient may be having difficulty walking or holding objects, or may be suddenly irritable all the time. This is OMS - a disease where the patient is too young to explain what is happening to their tiny body.

The intent of these chapters is to share information that we know about OMS to help you on your journey.

First of All

To begin, Dr. Michael Pranzatelli has prepared an excellent article on the NORD web site to introduce caregivers to OMS. You can find the article at

http://rarediseases.org/rare-diseases/opsoclonus-myoclonus-syndrome/

Many caregivers have been in the situation where they are introduced to a lot of new terminology and need to make decisions quickly. Also, in a number of cases, caregivers may be told to take a "wait and see" approach and progress treatment slowly. OMS is a disease where the outcome is considerably better the sooner it is properly treated.

Immediate steps to take once a patient has received an OMS diagnosis: 1. Go to an OMS specialist (see our section on OMS doctors) 2. Treat quickly (do not wait and see) 3. Educate yourself about OMS 4. Surround yourself with others in this situation 5. Stick to your plan

Go to an OMS Specialist

For many years, the challenge of OMS was to find a doctor who could properly diagnose the disease. There are many examples of misdiagnosis for weeks and months. In the meantime, the patient was getting progressively worse. Time is one of the enemies of OMS and these delays in diagnosis meant there might be some long term effects for the patient.

But now, thanks to the internet and awareness programs, diagnosis of OMS can often occur in a matter of hours or days. Furthermore, proper diagnosis might occur at almost any medical facility in the world. The issue now is finding the appropriate medical facility and/or OMS specialist. While OMS is extremely rare, there are a number of doctors who have handled multiple patients. In most cases, patients will work with a specialist to set the treatment protocol, monitor progress, and do annual or semi-annual check-ups. This specialist will work with the local doctor who will likely see the patient on a more regular basis. The local doctor may be a Primary Care Physician, or the neurologist or oncologist at the local hospital while the specialist may likely be hundreds of miles away and seen less frequently.

When seeking your specialist, some questions to ask include: 1. How many OMS patients have you treated in the past five years? 2. What is your typical treatment protocol? 3. What results can the patient expect?

When seeking your local doctor, some questions to ask include: 1. Will you work with the OMS specialist to develop the best approach for the patient? 2. Are you willing to implement the recommended protocol recommended by the OMS specialist? 3. Are you willing to engage with insurance companies when treatment or other services are denied?

In the United States, there are fewer than ten OMS specialists who have seen more than ten cases. If you are working with a doctor who has never seen a case or even seen only a few cases, that person is not an OMS specialist. Set expectations to see a specialist only. Also, a typical treatment used in many cases is the FLAIR treatment developed by Dr. Michael Pranzatelli at the National Pediatric Myoclonus Center for Pediatric OMS. The FLAIR protocol involves a three-agent protocol involving

Front-Loaded high-dose ACTH (corticotropin), IVIg, and Rituximab

Below, please find some of the OMS specialists in the United States:

Dr. Michael Pranzatelli - National Pediatric Neuroinflammation Organization (Orlando)

Dr. Wendy Mitchell - Children's Hospital Los Angeles

Dr. Mark Gorman - Boston Children's Hospital

Dr. Tim Lotze - Texas Children's Hospital (Houston)

Dr. Angela Waanders - Children's Hospital of Philadelphia

Treat quickly

OMS specialists have found that one of the key criteria in the battle against OMS is quick treatment. While a neurologist or primary care physician may find the FLAIR treatment protocol to be aggressive, the specialists agree that quick and aggressive treatment produces the best outcomes for many OMS patients. There is also agreement that when battling OMS, the "wait and see" approach is not a good for the patient. The outcome will typically enable the disease to worsen and limit likelihood for successful intervention.

Educate yourself about OMS

You will be making a lot of decisions for your OMS patient. Since OMS is such a rare disease, you need to learn as much as you can about OMS. Common sources for OMS information includes:

- Medical publications

- OMSUSA - see their web site information below

- OMSLife - see their web site information below

- NORD - see their web site information below

- Facebook - search for OMSLife or Dancing Eyes Syndrome support groups

Surround yourself with others in this situation

You do not need to face this battle alone. There are some support groups with people who are willing to share their experiences. Some of these opportunities include:

1. Ask your OMS specialist for names of people who can connect with you.

2. Contact The OMSLife Foundation about upcoming caregiver conferences.

3. Join one of the active Facebook groups such as OMSLife, Dancing Eyes Syndrome Support Trust, or OMSLife en Espanol.

For more Information

There are organizations which can orient you with OMS and connect you with specialists, support staff, and other caregivers.

National Organization for Rare Disorders (NORD)

http://rarediseases.org/rare-diseases/opsoclonus-myoclonus-syndrome/ 

The OMSLife Foundation

http://omslifefoundation.org 

National Pediatric Neuroinflammation Organization

http://omsusa.org

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.