negative NMDA antibody
tomorrow was day fourteen. i called this am and left a message for the nurse, explaining that we had been patiently awaiting lab results and we also had a biomedical scheduled visit ( planned a month ago) for tomorrow- i didn't want to go without results.
5:30...dr g's nurse called. "the NMDA receptor antibody came back negative."
last night i spent an hour googling NMDA and encephalitis of the brain. i went to bed praying it was negative, after reading complications, even death related illnesses.
but as soon as i heard the word "negative," i couldn't help feeling disappointed.
i've realized now that all i want is a real, true, non-negotiable diagnosis.
i know PANDAS is there, but anytime we utter the word, we have to explain and educate not only friends and family (which we don't mind doing), but even physicians.
autism is a behavioral diagnosis. you can have a primary "label," and still have autistic tendencies. for example, some children with down syndrome exhibit characteristics of autism...so do we dually label them, or do they just in fact co-exist?
with the onset in our case, it is not, and never will be in my book, good enough to have only a behavioral diagnosis when i know that this is truly a medical phenomenon.
conferencing with dr. g tomorrow to determine his next plan of action, and reviewing the nutraeval with our biomedical doctor.
times like these, it is so hard to keep going, keep fighting, keep pushing ahead...
give me a diagnosis that is non-refutable, non-questionable, non-arguable....
but most importantly, treatable.
5:30...dr g's nurse called. "the NMDA receptor antibody came back negative."
last night i spent an hour googling NMDA and encephalitis of the brain. i went to bed praying it was negative, after reading complications, even death related illnesses.
but as soon as i heard the word "negative," i couldn't help feeling disappointed.
i've realized now that all i want is a real, true, non-negotiable diagnosis.
i know PANDAS is there, but anytime we utter the word, we have to explain and educate not only friends and family (which we don't mind doing), but even physicians.
autism is a behavioral diagnosis. you can have a primary "label," and still have autistic tendencies. for example, some children with down syndrome exhibit characteristics of autism...so do we dually label them, or do they just in fact co-exist?
with the onset in our case, it is not, and never will be in my book, good enough to have only a behavioral diagnosis when i know that this is truly a medical phenomenon.
conferencing with dr. g tomorrow to determine his next plan of action, and reviewing the nutraeval with our biomedical doctor.
times like these, it is so hard to keep going, keep fighting, keep pushing ahead...
give me a diagnosis that is non-refutable, non-questionable, non-arguable....
but most importantly, treatable.
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