My husband has a history of sarcoidosis in which he was basically asymtomatic except for a cough. On his last CT scan, the nodules on his lungs were larger, so he and the physician decided to start him on prednisone 40mg daily. The same day, he also recieved a Lupron shot to postpone a prostatectomy for 2 months and given a two week prescription for androgens to counteract the Lupron "flash". Nine days after starting the steroids, he became confused and "acting wierd". I am a nurse and I suspected steroid psychosis and took him the the ER. His ammonia levels were over 300 and by now he did not know who I was and was acting agitated. In 3 hours his ammonia levels were over 400. My husband is not a drinker and his other liver function tests were normal. Despite Lactalose, the ammonia levels would not come down, and within a few more hours he was in a coma. This was over 7 weeks ago. He was lifeflighted to the University of Utah Medical Center and we were fortunate enough to have a doctor who had heard of cases where ammonia levels were very elevated with no other liver involvement. He said he needed to talk to a pediatric metabolic geneticist who just happened to work there. My husband was diagnosed with OTC deficiency, a very rare metabolic disease which is carried on the X chromosome and affects mostly males. Interestingly, 20 years ago, he had a brother die at the age of 25 of the exact sequence of symptoms. Back then, they diagnosed him with Reye's Syndrome. The doctors now say that they are positive he had the same genetic disease. In my husband's case, as well as his brother's, the use of steroids raised their metabolic level to a high metabolic state. Because he didn't have the nutritional support to fuel it, he was thrown into a catabolic state in which his body started burning his muscle, or protien which drove his ammonia levels to dangerously high numbers. OTC deficiency is controlled with a high carb, high fat, low protien diet and several medications that replace the amino acids that are responsible for the urea nitrogen cycle. The high ammonia levels were finally under control after dialysis, proper nutrition via TPN, and Lactalose. However, my husband has remained in a coma for the past 7 1/2 weeks. His MRI shows some atrophy of the brain, and there are some areas that show up brighter than normal which were affected by the ammonia. His prognosis is unknown. Because the neurologists have not seen this combination of events, they have no idea how much of the brain damage is reversable. He has now been moved to an LTAC unit in a long term care facility. This is killing me because I swore I would never put my parents in a long term care facility never mind my 51 year old husband. He has a tracheostomy, is breathing on his own, but does not open his eyes except briefly when startled like when we move him. I have been playing music through an IPOD, using a massager, and talk to him. I need help with ideas of what else I can do to stimulate his brain.
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