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marta
for nadia
Thu Mar 21, 2013 7:13am
98.246.41.177

nadia, i am allmoost 43 years old and have type 1 citrullinemia. i was dignosed at 3 months. my diseas is out of control i am in the hospital more then out i am on the transplant list. i don't know if i am going to be transplanted or not. i think babies have to weigh a cartain amout before they transplant them, cheeck with your child pediatrician. in oregon were i live babies have to be 20 pounds before they transplant them. i heard of people that have had thier kids transplanted cause they had citrullinemia and they all say that there kids are new kids and have more energy and a lot of them wish they had transpanted them sooner. go to a web site called true kids it's all about kids that had urea cycle diusorders and got transplanted and now they are doing fine.hope all this helps. marta

  • 4 weeks old with citrullinemiaNadia , Wed Mar 20 7:14am
    Hello, my daughter has type 1 citrulenemia and she is 4 weeks old, she is stable now but we are concerned about her. And we are double minded to get or not to get liver transplant, also we are in NY... more
    • for nadia — marta, Thu Mar 21 7:13am
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