PKU.com is a place where members can share their personal experiences with PKU such as thoughts, feelings and stories.
Anyone can read the blogs. To post your own blog you must be a registered member of PKU.com.
Blogs
(315 blogs)
By MaverickHartley1 | 16 hour(s) ago |
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hi i was just wondering where i go to sign up for CMS? our nutritionist told me to go do that but i really cant remember what CMS stands for to even look it up>>>any help would be great.....thanks:)
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By grantsmom | 3 day(s) ago |
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Hello! This is my first time blogging and I'm looking for advice. I have a beautiful 3 year old sone with classic PKU. He's been doing great, with a tolerance of 320 phe a day. My clinic has asked if I want to start looking into Kuva...
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By ptd | 4 day(s) ago |
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Hi my son is 3 weeks old and we were informed when he was 10 days old that he has PKU, my husband and I are still trying to absorb everything and come to terms with what this means. We have two girls who don't have PKU and had never even he...
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By glittermom | 4 day(s) ago |
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hi my name is chari as some may no well im doing better on getting my diet under control after pregnacy my last leavle was 12 my goal is 5 im back on only low pro pasta but i have no recipes for low pro bread bviscuts or flor totieas or other...
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By dancerr17 | 4 day(s) ago |
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heyy everyone, i talked to my doctor recently and as soon as she gets my blood test results she will be starting the paperwork so i can get on kuvan!! i would say probably in about 2 weeks i will be staring kuvan i will give u updates as so...
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By katiemag16 | 6 day(s) ago |
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Hi Everyone, As many of you know from my previous blogs, I have been fighting my insurance company for over a year and a half to cover my formula. I live in NY where formula is fully covered. For all of my life, my formula has been c...
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By itsmytimenow | 7 day(s) ago |
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AS A LIFELONG PKU PATIENT IT IS FROM RESEARCH AND MY OWN LIFE THAT INSTEAD OF BEING HELPFUL AT TIMES THE DOCTORS HAVE A HABIT OF COVERING UP THIER MISTAKES IN A SENSE CREATING A "THE PATIENTS ARE OUT TO GET US" DELUSIONAL MINDFRAME BECAUSE OF TH...
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By pattis1313 | 8 day(s) ago |
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I'm sure I mentioned before. Please bear with me if i am repeating myself. last time i was on diet my phe allowance was measured in "equivalents". what are they using now? I researched low pro foods. Is the protein in them the same as protein in,...
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By bannie | 9 day(s) ago |
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Okay, I'm starting the maternal PKU diet again! Just a quick explanation to everyone: we are hoping to start TTC soon and we don't want the world to know about it, but I do want to blog the process of going through a pregnancy with PKU, so you'r...
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By catmama | 10 day(s) ago |
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This is my first entry and I have not even contacted the pku clinic in Memphis. I have not even been trying to eat lower phe foods. I was diagnosed at birth and treated until I was 8 years old. I am now 48 and have many problems...
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