STAND YOUR GROUND by Mary Irwin Butler

I am both heartbroken and outraged by this story, “I Am Broken. Beyond Repair.” (In the Archives, September 27, 2018). God bless this family. 

I, too, have fought for my son's life four times in the past 16 years — the most recent being this summer. We thought we were losing him again (very similar symptoms as “Broken’s” awful story) from similar medication errors, abrupt discontinuations, multiple sudden changes, and over-medication with horrid combinations of multiple drugs and many injections.

We had to go up against the hospital bureaucracy when attending MDs and nurses began to refuse to communicate with us. At one point, we were "allowed" to get information only through the social worker. We were blacklisted as we watched our son deteriorate mentally and physically. He was a fall risk, could not eat or dress himself, had no short term memory, and had a 24/7 "one on one" aid for a week. It was horrific until we insisted on med changes that took another 2 weeks to bring him around.

Seven years ago my son came down with the rare, and possibly fatal, side effect of Neuroleptic Malignant Syndrome (NMS). For months with severe altered mental status and horrible catatonic symptoms, doctors would not believe us. Finally, an ER physician's assistant recognized, diagnosed, and admitted him to the medical unit, not the psychiatric unit. His suspicions found very labile vitals, fever, and abnormal labs. It was an agonizing nightmare. 

Never give up. Trust your instincts. Stand your ground. Advocate and support your loved ones who cannot speak for themselves. Keep sharing your stories. God bless all.

 Mary

Mary