Do you know what Opsoclonus-Myoclonus Syndrome is and who it affects?

Have you ever seen a person that has rapid eye movement? It looks like their eyes are jumping all over the place like they are dancing. This person may have Opsoclonus-Myoclonus Syndrome. 

 Opsoclonus is defined as an unusual disorder of eye movement.  This is where the eyes involuntarily dart around and Myoclonus is defined as short muscle jerks and “ataxia” indicates lack of coordination.  1 in 10 million children are diagnosed with this disorder every year.  The statistic support this being a rare chronic disorder. 

We currently only have less than a handful of doctors looking into the cause and treatment of the disorder.  We have one doctor in Illinois and another in California.  there are other doctors that receive protocol from these doctors and then treat accordingly.  There are other doctors that are working on their own theories of OMS, publishing studies and such.  However, to this day, there is no known definitive cause and thus no known definitive cure. 

There are a number of things that will bring out the symptoms in a person that has Opsoclonus-Myoclonus. Most times movement of any kind worsens the symptoms. You may see the arms, fingers, head, upper body, or eyelids jerk around. When the illness reaches its peak stage, you’ll find it’s impossible to stand or sit.  Anxiety and stress are major factors and will cause the symptoms to worsen.  Treatment is extremely important.

This illness affects both adults and children, but it presents itself in a completely different way. Most times in adults, they appear to have mental problems where as children will appear to have anger problems, they may be lethargic, or they may look and act like they’re nervous.

There are a number of things that can cause Opsoclonus-Myoclonus Syndrome. They can appear separately or together the causes are more specific and known. The two most common causes are infections and tumors. While there are other causes, they are very rare.

Most times when an infection is the cause, the patient may appear to have flu-like symptoms.  Most times when an Opsoclonus-Myoclonus Syndrome diagnosis is given through an infection, a tumor will be diagnosed later. The tumor is a neuroblastoma.  This is important to remember and the doctor should not rule out a tumor until tests are completed.

Tumors are usually found in the chest but it’s not out of the ordinary to find them in the pelvis or abdomen on occasion. Now you may wonder how a tumor in those areas can cause brain problems and that’s a good question. Research is being conducted right now, but there are a couple of thoughts on this.

One of the most commonly expressed theories is an autoimmune illness. The child with OMS receives an acquired brain injury.  Why?  The brain and the tumor are almost identical in tissue/cells and the immune system can’t tell them apart. The only problem with this theory is there are a number of questions regarding the presentation.  The docs don't know the exact cause of the brain injury yet — how and why exactly the antibodies are traveling up the spinal cord, crossing the brain barrier and attacking the brain stem and cerebellum.

Serum antibodies would be another theory that is diagnosed through lab testing. The doctor needs to test for anti-brain antibodies and abnormal white blood cells. These tests are done through blood work and spinal fluid.

Now you may wonder since there isn’t a lot of information about this illness, how do you treat it?  Depending on the location of the tumor, if it’s at all possible, it should be removed in children. Now in adults it’s not recommended because it’s possible the symptoms will get worse.  The challenge with treatment protocols beyond a tumor is that insurance won't always cover the treatment and the medicine can cost upwards of 10,000 – 50,000 a month for years.  Sounds crazy right?  Well, it is. 

There are aggressive treatment protocols available depending on how acute the OMS is within the child, the child's age, onset and more.  You can get more details on treatments by visiting http://omsusa.org/.

Opsoclonus-Myoclonus Syndrome can be found in both children and adults. It causes rapid eye movement and is usually caused by an infection or a tumor. Treatment is difficult at best and needs to be thought about before a decision is made. 

As a mom of a child with OMS, I am trying every day to help spread awareness to avoid a delayed diagnosis and to raise funds for research.  OMS awareness is crucial so doctors will not delay in diagnosing and limit brain injury.  OMS will cause cognitive issues that are able to be helped tremendously through brain training and proper methodology/pedagogy.  

OMS Awareness can be found at http://rhythmoflife.homestead.com/Awareness.html.

The International OMS Support Network can be found at http://groups.yahoo.com/group/OMSFamilies

Visit our foundations for OMS Research

http://www.chaseaway.org/

http://www.omsresearch.org/

http://rhythmoflife.homestead.com/runningforzoe.html

 OMS Awareness Videos

Living with OMS – Soham's journey with OMS from mehul joshi on Vimeo.

More OMS Videos from YouTube

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