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12/7/2016 Latest post:
Welcome to our CaringBridge website. Thank you for coming here to support Trace and our family! As you are most likely now aware, Trace has been struggling with a very complicated neurological problem. We will use this site to keep you informed about his battle with this serious health issue. Reaching a diagnosis has been very difficult. I am updating this "story" on Oct 10, 2017 from its original set up last December 2016. Some things are the same and some info has changed. Trace was originally cared for by several specialists at the Mayo Clinic in Rochester, MN and by local doctors/specialists in IN until January 2017. We have been to Mayo six times since June 2016. As of Jan 2017, doctors there still did not have a definite diagnosis. In February of 2017 we switched Trace's care team to the top IU neurologists at the Neuroscience center in Indy. After many treatments and procedures and a few hospital stays - we still have no definite diagnosis. What we do know is that he continues to have certain markers in his cerebral spinal fluid (CSF) that indicate a possible autoimmune response and inflammation. We know that he has a problem in the basal ganglia area of his brain (which modulates the control of his motor functions). This explains his speech, balance/coordination, handwriting, coughing/choking, attention, sleep, and other problems. The current diagnosis listed is that it is either Autoimmune Encephalopathy with parkinsonism features ,severe speech/swallow problems, severe postural imbalance, rigidity, etc OR it is some unknown Progressive Degenerative Brain disease of unknown cause. Tests since Feb 2017 until now (Oct 2017) have ruled out any known genetic disease, and mitochondrial genetic disease, they do not think it is anything infectious, or Lyme's disease, etc. and there were no abnormal findings on his spinal fluid DNA test done by researchers at UCSF California. Recent results of repeated spinal taps show he continues to show elevated CSF protein, elevated CSF oligoclonal bands, and elevated CSF IgG index , & continued general, non-specific, diffuse brain atrophy on MRI. This is a very difficult time for all of us. We thank you in advance for your love, prayers, and support. We have provided some backdated "updates" (under "Journal") to explain what we've done since Dec of 2015. We will continue to update as we go. We are keeping our heads up - as we know that GOD GIVES HIS HARDEST BATTLES TO HIS STRONGEST WARRIORS. 21 years ago, we chose Trace's name in part due to its Gaelic and English meanings: Courageous, the Battler, Brave, Warlike, & Fierce. There is no doubt he is living up to his name.