Sooo, its been a wonky week again, full of medical appointments for my daughter, Kaede, & tomorrow she has an MRI. Were not expecting to find anything, her doctors & I just want to rule out that her neurological issues, ie seizures, arent due to structural abnormalities or growths. Doctors have a saying, If you hear hoofbeats in the night, look for horses, not zebras! Which means: look for the obvious, its probably just a headache, not a brain tumor. But heres the thing, in our family the hoofbeats have rarely belonged to horses. For those who dont know the story about my son, Kito, he had a pituitary tumor that went undetected for many years--in spite of my diligently seeking diagnosis & treatment from both conventional & alternative medical providers. It didnt dawn on anyone that his GI issues could be caused by a brain tumor-! His GI symptoms, significant sensory issues & meltdowns were entirely attributed to his autism. My greatest regret is that, after so many rounds of doctors & tests failing to find what was causing his distress, eventually I believed the doctors that this was just autism. As a result, for a couple of years I backed off of seeking medical answers altogether & focused only on diet, nutritional supplements, sensory & behavior supports. These are all useful research-based interventions for individuals with autism. Unless the real underlying problem is a brain tumor! Even later when he was hospitalized with severe headaches & inability to eat, the mental health folks nearly had the pediatricians convinced that it was behavioral & suggested threatening him with a gastric tube might make him cooperate. By that time I wasnt buying it, nor was my boyfriend, Joe, who countered with, Behavior doesnt cause your hair to fall out! Then Joe got on WebMD, looked up my sons symptoms & the results said endocrine system & pituitary so I asked the dr to check those things. Wonky test results led to an MRI showing the tumor & a few days later he had neurosurgery to remove it. So, it wasnt horses hoofbeats in the night. It was a herd of damn zebras! Anyway, Kaedes MRI is almost certain to come back perfectly normal, I will cross one more item off my list of concerns with breathe a big sigh of relief, then well proceed to the next round of med adjustments to treat her epilepsy. Just another day in the life of an autism family! :)
Posted on: Thu, 06 Mar 2014 19:19:02 +0000
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