Laura Burk Benson

NIH discharge Journal entry by  Laura Benson  —  Jul 9, 2018 Colin was discharged from NIH tonight   NIH admitted Colin for a specific autoimmune protocol. He was monitored closely from May 29 through tonight (July 9) inpatient and finally discharged back to Walter Reed. He will continue to return to NIH as an outpatient three days/week.   Thankfully NIH is directly across the street from Walter Reed.    Although he is considered an outpatient, we will be spending many days at NIH -  transporting him back and forth from the Navy base to the NIH campus. We spent the entire first half of this year looking for other solutions or answers to "What is wrong with Colin?"  We even took him twice to Mayo Clinic in Rochester, MN for several weeks at a time. Sadly, there were no answers, no prognosis and not even a diagnosis.  The only conclusion is that the  medicine he is currently on is causing too many dangerous side effe...

Independence Day (4th of July 2018) Journal entry by  Laura Benson  —  Jul 4, 2018 This year has flown by.  We have spent so much time living in and out of hotels, hospitals and traveling from Bethesda, MD to Rochester, MN to Orlando, FL. Colin has currently been inpatient at NIH since May 29, 2018.  He agreed to try a new medication that could potentially help with his JAK/STAT pathway.  Additionally, his condition continues to wax and wane and with that he also has also reactivated the HHV6 Virus.  So, the doctors at NIH are trying to control his inflammatory response and his virus with two additional drugs:  Tofacitinib and Ganciclovir The goal is to add the Tofacitinib and taper off the other immune suppressing medications that he has been on (prednisone, cyclosporine and cell cept).  Long term use of these medications have been causing secondary problems for Colin (dangerously high blood pressure, Cushing Syndrome, glaucoma, ...