Luke has been diagnosed with opsoclonus myoclonus. We are still trying to process this and figure out exactly what this means for him, but here is a brief description from the National Institute of Neurological Disorders:
What is Opsoclonus Myoclonus?
Opsoclonus myoclonus is an extremely rare neurological disorder characterized by an unsteady, trembling gait, myoclonus (brief, shock-like muscle spasms), and opsoclonus (irregular, rapid eye movements). Other symptoms may include difficulty speaking, poorly articulated speech, or an inability to speak. A decrease in muscle tone, lethargy, irritability, and malaise (a vague feeling of bodily discomfort) may also be present. Opsoclonus myoclonus may occur in association with tumors or viral infections. It is often seen in children with tumors.
Is there any treatment?
Treatment for opsoclonus myoclonus may include corticosteroids or ACTH (adrenocorticotropic hormone). In cases where there is a tumor present, treatment such as chemotherapy, surgery, or radiation may be required.
What is the prognosis?
The prognosis for opsoclonus myoclonus varies depending on the symptoms and the presence and treatment of tumors. With treatment of the underlying cause of the disorder, there may be an improvement of symptoms. The symptoms sometimes recur without warning.
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He will begin another round of ACTH treatment right away, unfortunately starting at an even higher dose than he was on before. He will be admitted to the hospital next Tuesday for at least a few days, during which they will perform a sedated full body scan to check for neuroblastoma (tumor). The results of the scan will determine next steps as far as surgery, different treatment, etc.
It's hard to put into words what we are feeling right now, except to say that life just isn't fair. Please keep our precious Luke in your thoughts and prayers.
Oh dear Jana... words can't even tell you how sad I am for you. You are an amazingly strong person but I know it's hard to even be strong. I am thinking of you and if you need absolutely anything just say the word. Love and prayers to you all.
ReplyDeleteWe were saddened to read your last post and just wanted to say we love you guys. We are praying everyday for Luke. If you need anything at all please let us know. Love, Tony and Kristi
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