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Fri Sep 5, 2014 09:45

Hello! I saw this new message in my Google Alerts and wanted to at least say "hello!" My son is 6.5 years old and also has a Urea Cycle Disorder. He does not experience any swelling in the stomach, however "very bad headaches" could absolutely be a side effect of elevated ammonia.

I am not an expert though, just a mom, and anytime I have questions or concerns, I find myself on the line with the current Director of the National Urea Cycle Disorders Foundation. Her name is Cynthia LeMons and she can be reached at She will reply to you quickly and has been an enormous help and advocate for our UCD community.

You can also visit

( I'm sure Cindy will pop in here soon!)

Best wishes to you and yours!


  • Hi! I'm so grateful I found this place! My son is 8 years old. He has many special needs and because he's adopted we don't know anything about his background. Genetic testing (including mapping his... more
    • 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
      • citrullinemiamarta, Thu Jan 15 14:06
        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... more
    • Adopted son with suspected UCDCindy Le Mons, Fri Sep 5 11:32
      I'd be happy to help you. Headaches and stomachaches can be part of the symptom complex in poorly managed UCD, but they can also be associated with other issues. There may be several issues going on... more
    • Hi! — MelindaM, Fri Sep 5 09:45
    • Your sonMindy, Fri Sep 5 08:01
      Please email me with your phone number and I will call you. I was the past president of nucdf
      • emailmindy, Fri Sep 5 13:02
        sorry about that. my email is
      • Re: Your sonsmedisky, Fri Sep 5 10:32
        Thank you, Mindy! I would love that, and I'll do so just as soon as I figure out where/how to find your email! :) (I'm obviously new to this board.) Also, thank you so much for everyone who took the... more
    • Re: Adopted son with suspected urea cycle disorderClare Armstrong , Fri Sep 5 05:13
      Hello, I am the mother of a 19yr old daughter who has ArgininoSuccinic Aciduria (ASA for short, also known as ALD) but unfortunately, I am unable to help you as she rarely suffers from headaches or... more
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