Comments on: How do we treat urea cycle disorders http://www.disordersinformation.com/2009/10/19/how-do-we-treat-urea-cycle-disorders/ Tue, 22 Dec 2009 21:42:56 -0500 http://wordpress.org/?v=2.8 hourly 1 By: Cynthia http://www.disordersinformation.com/2009/10/19/how-do-we-treat-urea-cycle-disorders/comment-page-1/#comment-33 Cynthia Fri, 23 Oct 2009 23:46:16 +0000 http://www.disordersinformation.com/?p=228#comment-33 Please be very careful about the information you are writing about urea cycle disorders. Arginine is a TOXIN to one of the urea cycle disorders - arginase deficiency, so supplementing arginine in an affected individual would be lethal. Additionally, L-citrulline is the preferred supplementation in the first three disorders in the cycle, not arginine. There are also different types of arginine, and families searching for information on the 'net may not have the appropriate context from which to derive which form of arginine should be used. Making a blanket statement of "arginine" could be harmful. Certainly the awareness you are providing of UCDs is appreciated, but perhaps linking to a reliable informational resource like National Urea Cycle Disorders Foundation (www.nucdf.org) would be helpful. Please be very careful about the information you are writing about urea cycle disorders. Arginine is a TOXIN to one of the urea cycle disorders – arginase deficiency, so supplementing arginine in an affected individual would be lethal. Additionally, L-citrulline is the preferred supplementation in the first three disorders in the cycle, not arginine. There are also different types of arginine, and families searching for information on the ‘net may not have the appropriate context from which to derive which form of arginine should be used. Making a blanket statement of “arginine” could be harmful.

Certainly the awareness you are providing of UCDs is appreciated, but perhaps linking to a reliable informational resource like National Urea Cycle Disorders Foundation (www.nucdf.org) would be helpful.

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