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Nadia
4 weeks old with citrullinemia
Wed Mar 20, 2013 7:14am
198.228.200.48

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 and following at a metabolic clinic. They did not talk about liver transplant yet but with your experience is it worth getting a transplant when being stable on meds and special diet? What is the care in post transplant days? And what age can infants get the transplant? What is a good center for transplant?

    • for nadiamarta, Thu Mar 21 7:13am
      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... more
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