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Adopted son with suspected urea cycle disorder
Thu Sep 4, 2014 20:46


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 genome) revealed that he has a predisposition for at least 6 different (known) metabolic disorders, CPS 1 deficiency among them.

As lacto-ovo vegetarians, he has always followed a low-protein diet simply due to being part of our family. However, his biochemical geneticist and his dietician have told us to limit his protein intake to 15mg a day.

We've done this, but he still consistently gets very bad headaches, stomach aches and I've noted that sometimes after eating his stomach swells up and becomes very rigid. I've contacted the doctors about this, and they're stumped admitting they don't know exactly what's wrong and how to help.

I hate watching him suffer. Can anyone here tell me if headaches and stomach pain are "normal" with urea cycle disorders? (We've had some testing done and he's shown some but very minimal elevated ammonia levels.)

Thank you to anyone who's read this far and even more so to anyone willing to reply!

    • 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
      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,... more
    • 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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