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leanora
Pheburane
Sat Dec 5, 2015 23:50
24.222.211.76

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 good range which is also good ,thank you for getting back to me ,sorry it took me a while to write back don't come on here much , If you have any new info ,news on anything u can also email me at ....leepatandbelle@hotmail.com thanks so much :)

  • 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
    • Pheburane — leanora, Sat Dec 5 23:50
      • 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).
    • 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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