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On about February 11, Kevin's parents, Heidi and Peter, noticed Kevin’s vision had deteriorated greatly, he was having difficulty with mobility well beyond what could be expected for his vision loss, he had developed an inability to control his body movements. Over the course of a few days, Kevin went from being able to move easily about the house without assistance (despite his vision loss), to becoming completely disoriented and unable to find his way around the house. He was also having difficulty standing, walking, and controlling his limbs and other body movements. Kevin had also developed an inability to control his voice, and we feared that his neurological systems were beginning to fail.
Kevin was admitted to Ochsner Children's Hospital in New Orleans, LA, on the 16th and he was moved to the Pediatric ICU on the 18th. He is being treated for encephalitis (brain inflammation), chorea (jerky, involuntary movements), and uveitis (eye inflammation). They are believed to be autoimmune in nature. Kevin is a very unique case, as we found out, as droves of doctors and medical students came to observe him on his first two days on the main hospital inpatient floor. It was very disconcerting with doctors remarking that they had never seen a case of chorea as severe as Kevin’s.
Finally, on March 8th, Kevin was discharged from the hospital. While the family is together at home now, Kevin is still dealing with a host of medical issues including continued visual impairment, anosmia, and limb weakness. Heidi is in contact with his team of 12 doctors almost daily. It's been difficult for everyone to adjust to these medical developments. The physical toll is exhausting and the emotional toll is overwhelming. Your comments and support really help their well-being.
Note: Most updates are being written and posted by Heidi. This site is being administered by me, Jody McClellan, Peter's sister. Please contact me at email@example.com if you have questions or encounter issues with the site.