Lynn Allen Thorsen - Limited Treatment Protocols

Lynn Thorsen_SM.jpg

1986 - Lynn Allen Thorsen

4th Generation
Descendant of George Wright Earl

Birth: 1973
Metabolic-OTC symptoms confirmed 1986 age 13
Death: 1993 age 20

Limited Treatment Protocols

1983 - Lynn had multiple crises that included nausea, vomiting, and high ammonia levels that were diagnosed as a rare metabolic disorder. The treatment protocol included nitrogen scavenger drugs and a low protein diet. The anomaly of Lynn and his brother Don having a “one in a million” metabolic disorder was broken when his grandmother compared his symptoms with her cousin’s son, who had the same symptoms.

1986 - Age 13, Lynn presented the same symptoms as his brother, Don, that included erratic behavior agitation, nausea, and large pupils.

1990 - Lynn’s doctor referred him to Dr Leonard, geneticist at the University of Utah, where he was given a high protein challenge in addition to frequent testing of his ammonia levels. The results confirmed Lynn’s high ammonia levels were connected to a possible OTC deficiency. His unusual metabolic condition had no medically proven tests or protocols available for treatment of this rare glitch in his gene.

1993 - Lynn died during his fourth crisis while waiting for a liver transplant. Because of Lynn, the similarities with his cousin’s symptoms created a new understanding between a “once in a life time” rare oddity to an illness that had common ground among family members.

Note from JoAnn Thorsen, Lynn’s mother:

I wish I had pushed harder with my sons, Don and Lynn. The medications didn’t work for them, but helped my son Mickel. I wish I would have had the knowledge that is available today. Life would have been different. I see hope for my grandchildren if they are diagnosed. Knowledge is their pathway to taking better care of their health, if they are potential OTC carriers. Things are different now; they have better options and better care than the information available for Don and Lynn.