tag:blogger.com,1999:blog-145881411885623618.post6373214831429689146..comments2023-08-26T03:35:44.089-04:00Comments on CanadianCindyB: Not What We Were Hoping ForAnonymoushttp://www.blogger.com/profile/14993973346711466704noreply@blogger.comBlogger4125tag:blogger.com,1999:blog-145881411885623618.post-12430462982530967792011-06-30T13:46:30.410-04:002011-06-30T13:46:30.410-04:00I have heard of a few out of US families having th...I have heard of a few out of US families having their doctor consult with the genetic doctors here at Children's in dc. I know parents themselves have called Chrildren's to get the ball rolling where they live. Our doctors here, if we were to have anymore kids, would have specialists in the delivery room and start treatment immediately. If you email me offline I can give you the names of people at Childrens, and also of some other OTC mamas.Katehttps://www.blogger.com/profile/00792827926662946519noreply@blogger.comtag:blogger.com,1999:blog-145881411885623618.post-44605223978325019702011-06-29T21:35:41.035-04:002011-06-29T21:35:41.035-04:00Toronto Sick Kids is looking into it for us. They...Toronto Sick Kids is looking into it for us. They have never done treatment for a UCD from birth here, nor do I believe they have done any transplants under a year of age, but I gave them a number of starting points for research. We meet with them late next week.Anonymoushttps://www.blogger.com/profile/14993973346711466704noreply@blogger.comtag:blogger.com,1999:blog-145881411885623618.post-33441044531355984122011-06-29T20:48:43.217-04:002011-06-29T20:48:43.217-04:00I am so sorry you have to go through this! I concu...I am so sorry you have to go through this! I concur what Amy says. My daughter has CPS-I so maybe it is different, but can they start treatment right away on your little boy so that he never has a hyperammonemic episode initially? (Or maybe this is the personal choice you were talking about?) There are a few other mamas on facebook who are carriers and their boys have been transplanted.Katehttps://www.blogger.com/profile/00792827926662946519noreply@blogger.comtag:blogger.com,1999:blog-145881411885623618.post-89976809352037993242011-06-28T20:03:32.087-04:002011-06-28T20:03:32.087-04:00I'm sorry. I'm sorry you have to travel do...I'm sorry. I'm sorry you have to travel down this road again. I hope you can find sunshine through all the dark clouds. I'm glad you found my blog, although I'm sad when people find me because they are going through similar experiences. I have to say - regardless of the fact that we lost our son after his liver transplant - I have 2 beautiful, healthy boys who are thriving because of their 2nd chance gift of life. I would transplant again, if faced with the choice. Do you facebook? There's a lot of support for both living with the UCD and being transplanted. Look me up - Amy Martin Hillis and I can help connect you with a very supportive community. Good luck. I'm here if you need an ear.Anonymousnoreply@blogger.com