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Urea cycle deffect
Wed Sep 2, 2015 22:26

Hi was wondering if anyone on sodium phenylbutrate liquid was switched over to the Pheburane granules yet daughter is starting with 4 gram 4 times a day on Friday or Saturday and I am so worried it won't go well ....wondering what to put bit in or an easy way to take it

    • Pheburaneleanora, Sat Dec 5 23:50
      Hi Cindy , my daughter is 13 ,she wont take the meds unless its poured on red Gatorade ,but she is doing fine now in the couple months she has adapted well thank god, her blood work shows she is in a ... more
      • PheburaneCindy Le Mons, Mon Dec 7 11:21
        Hi Leanora - so glad to hear your daughter is doing better. I will send you a private email. :-) Best, Cindy
    • PheburaneCindy Le Mons, Thu Sep 3 13:14
      Leanora, my email address is (National Urea Cycle Disorders Foundation).
    • PheburaneCindy Le Mons, Thu Sep 3 11:18
      Hi Leanora, yes some of our Canadian families have switched over. Happy to network you if you would like to email me. Not sure how old your daughter is, but the granules are placed on the tongue and... more
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