TRUE Kids Discussion Board - Liver transplant

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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 in london where the transplant will take place if doctor say yes.I know its an life threatening but we think its better then everyday fear about ammonia level.
So far doctors controlled the ammonia level and his maximum level reached on 79 on his 3rd day of life.when we discharged 2 weeks ago then his level was only 14.
So his brain has not effected yet . It will be very hard for us to keep away from any infections because we have 3 years old boy who goes to nursery and picks virus quit often from the there.
After my research in uk over here 7 centers who the do liver transplant and kings collage is one of them.Also try to google ..climb...
If you need any information i shell be very pleased to help
beacause i can understand your feelings.
Again God bless you and many thanks

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Citrullanemia type 1 liver transplantation — malikzafar2000, Sat Mar 10 6:09pm

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
  
  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
- - 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
- - Liver transplant — malikzafar2000, Thu Mar 29 4:06pm
  - - 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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