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 have also been there post-transplant. They were the catalyst for the longitudnal study that Justin is in that will assess the quality of life one gets from transplant - and when his transplant plumbing got clogged in 2007 and he developed hyperammonia from a TIPS shunt procedure (which happens regardless of whether you have a UCD) - they provided me a lot of support and guidance on how Justin's post-transplant argininosuccinate lyase deficiency might need to be dealt with in this situation (e.g., would he need arginine to get through it).
I just worry that the fears UCD parents have about transplant, while partially legitimate, are too excessive to match the reality of the art today.
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