Hi,we live in the uk our 3 year old son has citrullinemia. His ammonia reached 671 and it has had some bad effect on him. We were told liver transplant isn't suitable for him because they were controlling it medically but we kept our options open and he is now on the transplant list. It's very scary but the damage caused by high ammonia is very risky and I wouldn't wish it on anyone. It's also hard stopping children from eating things they're not allowed to. Having citrullinemia is not good quality of life for anyone. I hope the doctors listen to u and I wish u all the best
Hi There. My name is khalid.My son has born on 27 feb 2012 with citrullanemia type 1 doctor has control the amonia level from birth because they knew it.(Its an sad story because our 1st son... more
Re: Citrullanemia type 1 liver transplantation — Nadia,Fri Mar 30 6:47am
Our daughter, Jessica, is 19 yrs old. She has ASA. She received a liver transplant 11 yrs ago and it has been the best decision we made. She did have complications right after surgery and what... more
Very sad to hear that your child had some problem because of high ammonia level.Why his level went up? You did,t know it that he was affected with this condition. I shall pray for him. How is he... more
He was our first child and we didn't know he was poorly until he became very Ill at home. We had never heard of this illness before and noone in either of our families hav ever had it. He went on the ... more
Yes i shall pray for your son and i hope God shall show a miracle . He ,ll get well soon. Our first son was born in dec 2007 and he died after 3 days because of citrullanimia, we brought him home... more
Thankyou really appreciate ur prayers and kind thoughts it means a lit and always helps to meet n talk to people who truly understand. We have another baby who is healthy, me n my husband r not... more
Hi Khalid, We have a granddaughter we've been raising who also has citrullinemia. She's 13 years old now, I still can't believe it. Yes this has to be the hardest thing to live with on a daily basis... more
Hi karen, Thank you for your support and guidance.I shall pray for your granddaughter for long and happy life. We had meeting with our doctor and she has agreed to refer us to kings collage hospital... more
Thanks and we wish the very best for your family also. It is indeed a hard road to travel and there is some comfort in not having to travel it quite alone. Please let us know how you make out, we... more
Hi, Thanks for all the information . I shall check on usd foundation.Citrullanemia is a very rare condition in uk most of doctors does not know about it but i found so many people in usa. I shall... more