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 effects, and unfortunately they aren't helping control his condition any longer.
He has been constantly waxing and waning - but never healed or even managed. He has had several relapses and hospitals stays. And, every day is pain and discomfort for him.
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 effects, and unfortunately they aren't helping control his condition any longer.
He has been constantly waxing and waning - but never healed or even managed. He has had several relapses and hospitals stays. And, every day is pain and discomfort for him.
The NIH doctors had planned to taper the immunesuppressive drugs that he has been on for the past 1 1/2 years and replace them with a new experimental drug.
The drug itself is not experimental, but using it for this purpose is experimental.
To be clear - this drug is prescribed and used on other types of conditions, but not on someone with DRESS syndrome, Drug Hypersensitivity or the type of immune condition that has manifested in Colin.
The goal during his stay at NIH was to get him off some of the meds through a slow taper.
NIH added a new drug: Tofacitinib to target his jak/stat pathway.
They also added an antiviral medication, valganciclovir, for his HHV6 reactivation.
They also added an antiviral medication, valganciclovir, for his HHV6 reactivation.
So basically, add the new drugs and taper off the others.
So far - some of the taper was successful, while others were not.
Today we were told by one of his doctors that this new drug may not cure him, but we were reminded and do understand that he is helping to further science and research and any others that may suffer similar conditions.
No comments:
Post a Comment