By Dr. David Kaminskas
It is Dec.7, 2015, and I am sitting in a darkened room about five feet from my firstborn daughter. Ten feet from me sits a nurse closely watching my daughter’s vital signs, which include blood pressure, heart rate, oxygen saturation and CO2 level. My daughter is receiving her first of 10 daily infusions of ketamine at a clinic in Indianapolis.
Ketamine is an old anesthetic agent that is rarely used in humans anymore. It is actually what is frequently given to horses when they need sedated for a procedure or surgery. By medical standards this infusion is considered investigational and not approved for use by our FDA. Standard treatments have stopped working for my daughter. This is the only medical treatment center in Indiana that offers ketamine infusion therapy and there are not many clinics across the country that offer this.
My daughter has CRPS (Complex Regional Pain Syndrome), previously known in the medical literature as RSD (Reflex Sympathetic Dystrophy). This is a neurologic disorder that affects the sympathetic nervous system. It is a relatively rare disease with bizarre manifestations. In my experience, the majority of doctors know either very little or absolutely nothing about the diagnosis and treatment of this condition. My daughter has done extensive research on this subject and almost always knows more than her caregivers. She introduced me to the ketamine option, and after researching for myself, and talking to the team in Indy, we decided to give it a go. Ketamine blocks the sympathetic nervous system and has been shown in small trials to successfully treat CRPS.
The disease usually manifests itself after a minor injury. At age 15, my daughter was volunteering at St. Joseph Hospital and a patient’s chart fell on her right hand. Over the next several days the hand became cold, painful and swollen like a giant marshmallow. There was also paralysis. This was the beginning of her sympathetic nervous system going crazy. A year or so later she slipped and fell on ice and the disease moved into her right leg. Her foot became cold, cyanotic, swollen and paralyzed.
Eventually with sympathetic blocks and physical therapy, both the right hand and foot recovered, but CRPS never really goes away. It eventually moved into her internal organs including her bladder and intestines. I have witnessed my daughter suddenly have abdominal distention to the point of looking seven months pregnant only to return to normal in several days. Over the last 20 years there have been remissions and exacerbations, but in the last year it has progressed, and affected her right hand and right leg again. As I write this, she can no longer walk and has been in a wheelchair now for about three weeks. Having a two-year-old daughter in addition to an 11-year-old son has been a challenge, especially for a single mom. It was time to try something different in hopes of improvement and maybe even a remission.
As the ketamine infuses she first begins to lose vision. She can still tell I am sitting close to her but she cannot focus at all. She suddenly sits up anxious and scared, and motions with her right index finger to come closer. I tell her I am here and will not let anything bad happen. I realize she cannot hear me. Ketamine causes sensory deprivation and she can barely hear now. I crank up the volume and speak to her about one inch from her right ear. I think she heard me this time. The nurse quickly draws up some diazepam and pushes it IV to settle my daughter down. Ketamine also causes vivid dreams and nightmares and benzodiazepines are usually given in conjunction with the drip to provide a calming and amnestic affect. She finally drifts off to sleep.
As I settle back into my chair I begin to do my daily reading in “The Word Among Us.” The Gospel reading for today is Luke 5:17-26. The story is about a group of men who are carrying a paralyzed man on a stretcher and trying to get close to Jesus. “But not finding a way to bring him in because of the crowd, they went up on the roof and lowered him on the stretcher through the tiles into the middle in front of Jesus. … He said to the one who is paralyzed, “I say to you, rise, pick up your stretcher, and go home.”
I just read this and smiled. Another God thing? I continue to be amazed at the gifts we receive through Our Savior Jesus. This is the perfect reading for today. I am hopeful that with grace from above my daughter will walk again in several weeks. More importantly, I also pray that my daughter will return to Church and walk down the aisle to receive the sacrament of Holy Communion at St. Elizabeth Ann Seton in the near future. As Jesus says in today’s reading, “Jesus knew their thoughts and said to them in reply, ‘What are you thinking in your hearts?’ Which is easier, to say, ‘Your sins are forgiven,’ or to say, ‘Rise and walk?’” Right now I am hoping for both.
Written with permission from my firstborn.
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