When Doctors Don't Have the Answers: Posthypoxic Myoclonus
Lance Adams Syndrome
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Member Joined Apr 25 2013
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33 years old Albany NY
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Post a CommentOops!The words you entered did not match the given text. Please try again. 1 Comment
My son is 7 1/2 months old and was diagnosed with hypoxia when he was born due to lack of oxygen during delivery...caused by doctors/nurses apparently not paying enough attention to their jobs. My boy was in the NICU for the first 2 weeks as he started having seizures at 12 hours of life that doctors struggled to get control of. After 2 weeks he was discharged with two meds however ended up only being on the one medicine of Keppra (Levitricatem). Other than developmental delays, my son was doing fine for the first 3-4 months then all the sudden he started getting this "jerking" in his right arm and face (keeping in mind he sustained injury to the left side of his brain therefore causing issues to the right side of his body). It started being only when he woke up and fell asleep however quickly progressed into an all day thing. As symptoms started worsening his neurologist suspected him of having myoclonus so he incrased the dose of the Keppra, however upon doing so it actuall ymade my son's symptoms worse which was a bit discouraging as all the research I do says this is the best medicine for treatment of myoclonus. Since symptoms began, my son has tried Keppra, Onfi and now Depakote however each new medicine and dose increase his symptoms seem to worsen or change however when I point it out to his docotrs they all say his body needs to adjust...well it's been 4 mnoths and it''s getting worse with every new medicine/dose. Does anyone have a situation similar to this that can offer suggestions? My heart is breaking for my poor boy and I feel so helpless...any suggestions are appreciated. Thank you.
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