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Originally Posted by LaviniaHyacynth  Myriam, I am so sorry to hear that Royce has MVD....I hope that diet will help him. Vivi was already on a diet for both her liver and kidneys....we were aware that kidney troubles were coming....her liver is so small that the kidneys are overworked...Urate chrystals and stones are common with LS...her diet is low in purine as well as protein which is what is needed to help stop the stones from forming...at the moment she is on antibiotics to fight her UTI and another drug to help her kidney stones....the biggest danger is that they will move and block her urethra...sadly that will be fatal because the only solution at that point would be surgery and she can't have it...we have talked to Dr. Tobias in Tennessee...she is a wonderful doctor that has devoted her entire practice to understanding and treating LS and was the surgeon who invented the constrictor surgery that has been so successful. She was amazed that Vivi has lived as long as she has because her numbers are so bad....we have been able to control the seizures with lactulose and diet and close supervision. I am lucky that I can take her to the studio with me each day. It seems that you and Royce are under the care of great doctors and I hope and pray that he will get better soon. Hugs to you both. |
Dr. Larry Adams at Purdue University performs lithotripsy ( destroying kidney stones by shock waves ) you might consider that to avoid that the stones
move and block her urethra...