When I had to make my case to the doctor's for Justin's transplant I put together a timeline of "incidents" showing that diet/medicine were not sufficiently working and I gave the doctor a printout showing how the parents of untransplanted children with Justin's particular UCD (ASA) said their children were doing - some who were dying in their late teens. I also gave a listing of pub med articles recommending transplant for UCDs. Be sure you are making your case to the actual gatekeepers of the transplant (e.g., your transplant center's gi specialist or transplant surgeons) and not just the metabolic docs. For one reason or another some metabolic providers seemed biased towards diet and medication being the only sensible option.
Almost 10 years since Justin's transplant - the metabolic doctors at Denver Children's these days now recommend transplant for Justin's UCD. Dr. Jorge Reyes at the University of Washington is also a transplant doctor who thinks that transplant has become sufficiently safe and it should be the first option sought. You might want to contact him.
My daughter is 10yr old and she has started to experience high ammonia levels after all these years! I have been thinking about a liver transplant for Alysa but think her drs at Chop aren't gonna... more
My son was transplanted in Pittsburgh, when Dr Jorge Reyes was the transplant director (before he went to Washington) - he had Jared on the 'list' before we even agreed to transplant. When we were... more
I am very thankful to the foundation for all the information they've give us, support during crisis and work they have done for early diagnosis and research for a non-transplant related cure. That... more
Joe, 'trying to understand other perspectives' is my constant struggle, whether it be medical, political, or who makes the best chocolate :) Keep up the good work. And I agree, the NUCDF gave me my... more
Eileen, LOL! I hear ya. NUCDF was there to show us that a g-tube was a path to sanity and that our metabolic team wasn't always up on the latest protocols during Justin's first two years. But they... more