Continued from part 7
When we last left Billy, he had seen the second neurologist and everyone was waiting for the results of the MRI to come back.
Barbara: I remember the MRI so clearly. It was the Saturday before Mother's Day and we had to drive about 45 minutes in a nasty rain storm to get to the diagnostic clinic.
Billy had to be fasted as he would have anesthesia for the procedure so we timed everything so we could put him right in the car. He wanted his breakfast and he let us know about it. All the way there.
I was anxious for the results and to be honest fearing the worst but Dr. Mitelman did his best to keep me focused on the positives.
Remember that quirky sense of humor we share? It comes in handy at times like this.
The MRI went well and Billy recovered from the anesthesia quickly. The staff were compassionate and supportive and I was told we could have the results by the following Tuesday.
Dr. Mitelman: Trepidation fought with anticipation and curiosity for the emotional spotlight the morning of Billy's MRI. Would a physical anomaly in his brain or spinal cord finally provide answers, relief and lay to rest months of anxiety and unpredictability?
But, what would be worse?
Would it be the brain tumor that could threaten Billy's future or the clean scan that would mean devising a new game plan?
It made me re-examine myself, my peers, and my clients.
Where are we going with this and what are we going to do when we get there?
A few days later the neurologist called to confirm no anomalies were found on the brain and spinal cord scan. What a relief! No grounds for back pain and no anomalies within Billy's head.
Time to make a new plan.
Barbara: When the neurologist called to report the MRI results I actually cried with relief. She gave me some options to discuss with Dr. Mitelman.
She suggested we consider doing the brain biopsy to provide us with a more conclusive diagnosis and that we needed to pursue the cause of his skin and possible pain issues.
Back to see Dr. Mitelman. We had more conversations about this than I can count.
So many questions, so few answers. Process of elimination is frustrating.
All I knew was Billy's peculiar behaviors were increasing: pacing, agitation, restlessness. And the now-daily tremors were growing in frequency and intensity. At times, he was licking and chewing any body part he could reach.
Dr. Mitelman: If there wasn't a tumor, could that mean there was an inflammatory problem hiding? Some bad wiring?
The neurologist suggested the next stage was getting cerebrospinal fluid and brain biopsy samples. Barbara's response was a definite “no”, as she felt the risks were too great. Though it sounded outlandish, there was some logic to performing the biopsies. However, I had to concede to Barbara's firm decision.
So, if there was pain, where could it be? His skin? Would any other organ system care to step forward and speak up?
Our goal became to seek some immediate relief. An e-collar worked just about as well as handcuffs. Though he couldn't manage to lick and chew his target feet, he managed to disrupt himself and his family through loud nocturnal activity.
We used gabapentin to mitigate pain signal transmission at the level of the spinal cord, and tramadol, an opiate, to dull pain sensation and awareness to some degree.
For anti-inflammatory relief, I prescribed methylprednisolone, a cousin to the steroids used and previously discarded. Steroids are the mainstay in relief of pruritus, and this one has fewer side effects than some others.
And it worked. For a short while.
Soon the side effects of the steroids including increased water consumption and urination began to overtake the benefits.
So the licking and chewing resumed. Then bouts of aggression were added to the nightly pacing.
A consulting pharmacologist suggested this could be 'steroid mania', a condition I had only heard of but hadn't witnessed. I didn't have, nor did my peers have, any other cases to compare to or contrast with.
Barbara: This was such a physically and emotionally exhausting time for us. We still had some avenues to explore but the mounting costs were having a bigger impact on the family.
I had many questions but I never 'questioned' Dr. Mitelman's judgment or treatment plans. I was always a part of the decision making process, and we were certainly on a challenging journey together. Put simply, I trust Dr. Mitelman.
It was suggested to me on several occasions, by those around me, that I should ignore Billy. Put him somewhere safe at night and just go to sleep. Let him pace, have tremors, cry out.
I could not ignore him then, nor can I now.
My commitment to Billy means taking care of him, including times when he isn't well or has discomfort. This is not open for discussion.
When A Small Sore Turns Into A Catastrophe: Billy's Story (Part I)
Life-threatening Infection Resolves; All Is Good? Billy's Story (Part II)
What Is Going On With Billy's Skin? Billy's Story (Part III)
The Plot Thickens: Billy's Story (Part IV)
I've Never Seen That Before: Billy's Story (Part V)
Billy's Diagnosis Still Unknown: Billy's Story (Part VI)
Neuronal Ceroid Lipofuscinosis (NCL)? Billy's Story (Part VII)
Time To Make A New Plan: Billy's Story (Part VIII)
Atopic Dermatitis? Billy's Story (Part IX)
It Is Not Neuronal Ceroid Lipofuscinosis But What Is It Then? Billy's Story (Part X)
My Dog Has A Gut Of Steel, Doesn't He? Billy's Story (Part XI)
Feeling As Though Running Out Of Options: Billy's Story (Part XII)
Fighting Fire With Fire Backfires: Billy's Story (Part XIII)
A Second Endoscopy: Billy's Story (Part (XIV)
Staying The Course: Billy's Story (Part XV)
Fewer And Fewer Solutions Left: Billy's Story (Part XVI)