TRUE Kids Discussion Board - Citrullanemia type 1 liver transplantation

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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 who......Dotor did,nt diagnose ontime).
Anyway let talk about positive side.Our new babby is still in hospital and control but it is very hard time for us and every second very think about his amonia level.
Would you please tell me where should i contact and who..
I live in reading ,uk.
I have asked one doctor but she said this is not the case but i am not satisfied from her.
I am willing to go anywher in the world to save my son.
Please help us if you can.
Best regards

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Re: Citrullanemia type 1 liver transplantation — Nadia, Fri Mar 30 6:47am

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... more
- Marta transplant — mother mary, Thu Jun 13 1:57pm
  
  Please read my previous post. Feel free to use Marta as an example of the need for transplant. She is 44 and her situation worsened over time. No one is sure why this is but know that this did happen ... more
- Liver transplant — Ludy Castaneda, Sat Mar 31 7:40am
  
  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
- Hi Nadia — malikzafar2000, Fri Mar 30 6:48pm
  
  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
- - Re: Hi Nadia — Nadia, Sat Mar 31 4:49am
    
    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
  - - Hi Nadia — malikzafar2000, Sat Mar 31 1:55pm
      
      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
    - - Re: Hi Nadia — Nadia, Sat Mar 31 3:10pm
        
        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
Citrullinemia & liver transplantation — Karen Worley, Mon Mar 12 8:43am

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
- Marta transplant — Mary, Thu Jun 13 1:49pm
  
  This seems a good time to let you all know that, last Friday, Marta received her new liver. Today, Thursday, she is doing extremely well. Marta is the oldest living person with citrullinemia. Our... more
- - Re: Marta transplant — nadia, Fri Jun 14 6:58am
    
    so happy to hear Marta has finally had her tansplant I really hope it all goes wel for her and she recovers soon, my thughts and prayers are with her xx
  - Re: Marta transplant — kara, Thu Jun 13 10:38pm
    
    Marta, Congrats on your new liver. My daughter had her transplant almost 3 years ago. She is doing great! I am hoping that you will have a speedy recovery and be able be able to feel better quickly.... more
  - Marta — Karen Worley, Thu Jun 13 4:25pm
    
    Dear Mary, We are so excited for you all! I pray she continues to do extremely well! I was so impressed with Marta when I first "talked" with her online about 14 years ago and she gave us such hope... more
- Liver transplant — malikzafar2000, Thu Mar 29 4:06pm
  
  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
- - re:Liver transplant — Karen Worley, Thu Mar 29 4:46pm
    
    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
- Citrullanemia type 1 — malikzafar2000, Mon Mar 12 5:17pm
  
  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

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