My sister is a breast cancer survivor and she has 19 months old girl child. Now from last one week we came to know that the girl child is suffering from Obsoclonus- myoclonus syndrome (OMS). her CT Abdomen reports shows one low attenuation soft tissue mass lesion on right adrenal gland. Can it be a Neuroblastoma ?and does it can cause such type of problems as we are facing now? And is it completely curable?
Her whole body is continuously vibrating involuntarily.
Pls suggest what will be the way to go out of it?
Written by
anantprakashpatidar
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I am so sorry that your family is dealing with this. As this site is specific to breast cancer, I doubt that anyone here can answer your question.. Every cancer case is different, and there are stories of miracles every day.
This site has a good overview with a section specifically for parents and families: Opsoclonus-Myoclonus Syndrome - NORD (National Organization for Rare Disorders)
This seems to be the definitive site, though it gets very technical and is US based. It might be something to share with your neice's doctor. I would suggest scanning through it to help you become familiar with the terminology so that when symptoms and / or treatments are discussed the language isn't completely foreign to you. Don't try to understand every word, as much of it won't apply to your neice. omsusa.org
Best of luck to your niece. There are some very positive success stories about children surviving and concerning this condition!
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