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Cindy Le Mons
Pheburane
Thu Sep 3, 2015 11:18
66.214.186.159

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 swallowed immediately, then one can use something like white grape juice or water to remove any residual from the tongue. Do you have the illustrated directions? If you want to email me, I can attach them to an email for you. The other families have had no problems at all, by the way.

  • Urea cycle deffectLeanora, Wed Sep 2 22:26
    Hi was wondering if anyone on sodium phenylbutrate liquid was switched over to the Pheburane granules yet ...my daughter is starting with 4 gram 4 times a day on Friday or Saturday and I am so... more
    • 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 cindy@nucdf.org (National Urea Cycle Disorders Foundation).
    • Pheburane — Cindy Le Mons, Thu Sep 3 11:18
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