We returned from the consult in Rochester yesterday, a round trip of 461 miles, and took some time to rest, process what we learned, and begin some research to confirm the doctor’s conclusions and advice.
The two most helpful parts of the visit were 1. this doctor’s thoroughness and complete explanations 2. the fact that he gave us more than a label, he gave Tim a course of action which he strongly believes will help. This, combined with Tim’s statement to me that he believed this doctor and thought that he and the two others who have been his strongest medical advocates were doing a good job for him, is a major component to a good outcome, and potentially a full recovery.
This doctor, in comparison to the manner of treatment from the several previous physicians whose demeanor left Tim angry, frustrated, discouraged and hopeless, was a caring professional who clearly understood the situation and could express his conclusions in a way that gave me confidence. Initially, Tim was angry, but after I was able to explain how what the doctor said was not what he initially understood, his response has been more positive than he’s been in some time.
The nagging question of “why” these abnormal movements began — the one thing he really wants to know — may not ever be answered for Tim. We know that he has no clinical evidence (test results) that point to any underlying illness. We know that the year before they started included a painful and tough to treat infection, a serious allergic reaction to a medication for that infection, a series of more mundane infections, a vaccine for meningitis, and finally the diagnosis of essential tremor in his right arm. The arrival of the tremor, which the new doctor believes is a distinct issue, precipitated a summer of testing and medication trials with lots of unpleasant side effects, rounded out a period of considerable physical stress, which the new doctor explained to us can most certainly cause the kind of chemical/electrical “short circuit” that’s behind Tim’s symptoms. That’s not even to mention all the academic complications of missing school/making up work for the better part of the winter-spring semester, and all the “normal stuff” a teenagers life holds (Tim had a new driver’s license and a new job at that time as well).
So, to aid his body in re-establishing that circuit and allow him to regain control of his muscles, we will search for a physical therapist to help Tim learn strategies to master these life-altering, abnormal movements. We will continue with the medications that have helped him thus far. We will help him to get back his social and academic life. We will continue to support and pray for our son, brother, friend, and provide whatever support he needs to live into his God-given potential.