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marta
citrullinemia
Thu Jan 15, 2015 14:06
71.237.200.222

Leanora, i was born with citullinemia also not dignosed until i was 3 months old. As a kid my ammonia levels were well controlled but once i turned 13 i was in the hospital not alot but often due to illness or my period etc. I am glad that your daughter has low ammonia levels. At her age it was hard to get to get the teacher to understand my illness let alone why i would miss school excpect for one teacher that understood cause she had 2 diabetic boys. My illness got the best of me and in 211-213 i was in the hospital every 6 days with high ammonia and 10 grams of protien ended me up in the hopital so dr gave me no choice but to transplant. I was transplnted june 7 213. It is hard after 44 years of low protien diet to change diet. How much protien is your daughter allowed? I had a mickey button for my meds and formula for sick days. Marta

  • citrullinemiaLeanora, Wed Jan 14 13:04
    hello , my daughter will be 13 in march she was born with citrullinemia and hasn't had this problem ,she is on A LOW PROTIEN DIET and takes her meds and formula daily ,he ammonia levels are in good... more
    • citrullinemia — marta, Thu Jan 15 14:06
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