Why We Didn’t Accept ‘No’ for an Answer When Finding a Diagnosis for Our Child
May 3, 2017
by Penny FitzMaurice as seen on The Mighty
“His constellation of symptoms does not match any known disorder or syndrome.”
I can’t tell you how many times I heard this exact sentence from every doctor and specialist my son saw in our two-year journey seeking a diagnosis. We would leave appointments crying and angry because they just didn’t seem to care enough. He wasn’t easy to figure out, so they passed him on to the next department.
Silas was born in November of 2012 with fiery red hair and bright blue eyes. He was healthy and so perfect looking; we were in love from the first second we laid eyes on him. It only took 24 hours for the first sign that something wasn’t right to show up. He failed his newborn screening test four times. We were sent home with instructions to see an audiologist and get another test. Over the next few weeks, more red flags waved louder and louder. He wasn’t making eye contact, he wasn’t latching on to breastfeed, he would bottle feed and then spit up half or more of his bottle. Over the next few months, he showed no interest in playing with toys and even with assistance, would just drop the toys on the floor.
Over the first year of life we brought these concerns up to his pediatrician, and after marking off “no” 99 percent of his nine-month questionnaire, we got our very first referral to a geneticist. Then began the two-year string of endless appointments, needle pokes and sedated everything! Every doctor we saw brought up autism countless times, since he showed the traits. We knew in our guts this was something genetic. We kept telling them we weren’t going to let them diagnosis him with autism because once they did, they would stop looking into a further diagnosis.
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