Welcome to my OMSChild website. Here you will find different pages for different things.
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OMS can come with or with out Neuroblastoma. Most cases are usually with Neuroblastoma, but fortunately I didn’t have Neuroblastoma.
Neuroblastomas are cancers that start in early nerve cells of the sympathetic nervous system (sympathetic neuroblasts), so they can be found anywhere along this system.
A little more than 1 out of 3 neuroblastomas start in the adrenal glands. About 1 out of 3 begins in sympathetic nerve ganglia in the abdomen. Most of the rest start in sympathetic ganglia near the spine in the chest or neck or in the pelvis.
Unfortunately OMS is so rare that as of right now only 1 in 10,000,000 children or adults are diagnosed with this disorder.“Opsoclonus is defined as an unusual disorder of eye movement. This is where the eyes involuntarily dart around. Myoclonus is defined as short muscle jerks. Ataxia indicates lack of coordination. Currently, only less than a handful of doctors are looking into the cause and treatment of OMS. To date, however, there is no known definitive cause, and thus no known decisive cure.” (http://omslife.org/)
The way my parents have explained the way I got OMS is like this. When I was 18 months old I got very sick, so my immune system started up and try to get rid of the cold, like it should. But because I had a super immune system it decided not to shut down and got confused and began attacking the base of my brain. No one could explain why I had all these weird symptoms, dancing eyes; loss of balance, muscle spasms and my speech was getting bad. My mom and dad went from Dr. to Dr just to learn what it could be. There were many misdiagnoses, an inner ear infection was the main one every one kept saying I had. Finally in 1994 in Orange, CA, one of the Dr’s. came across a name for all of my symptoms, Opsoclonus Myoclonus Syndrome or OMS.
So, now the next step was to control my body from attacking its self, so I was given a steroid called prednisone, like you read above. The prednisone helps to shut down or ‘turn off’ my immune system so it stops attacking me. I was also on IVIG’s. On this medicine I was slowly regaining every thing back, my walking, my speech and my balance. Although there was a lot of speech and fiscal therapy involved to help. In order to get me off every thing and stop with the medicine was they gave me the med orally, 2 times per day. They would wean me off it by .5 gm. in the morning for a month, and then the next month by .5 gm. in the evening, and continue that way until I was off it all together. It took a long time. Other wise if taken off to fast or just stopped altogether my immune system would fire up again and begin to attack. I took prednisone from 18 months until I was 7 years old. That very slow process was the only way they could get me off of it. And it literally took years.
Finally after a very long and hard seven years, and there were NO signs of any OMS systems any more! (Example, loss of balance, bad speech, dancing eyes, ext.) I was done with all my medicine!!
After the long fight I now began the next long and still hard road to recover every thing I didn’t pick up in thoughts seven years. My left side of my body was much weaker than my right so like I said early fiscal therapy was needed to help, along with some fun activates, like, ballet, karate, horse back riding, and baton. My dad would take me fishing when I was little witch helped me get used to the rocky movement because my balance was really bad, I also got a trampoline and a swing set to help as well.
After every thing became easy, school became harder. My parents had meeting with every single teacher to teach them about my OMS and what they could and couldn’t expect from me. We had IEP’s for me in every grade. I had extra help on tests or home work and if I needed it I would get an extensions on my home work, after it was okayed by my parents or “case worker” then they would help see it threw. I also would get accommodations in every thing. (Accommodations are extremely important for any OMS child!)
Thank you for taking the time to stop by my website.