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.
September 2009
(22 blogs)
By Zoeysmommy | 12 month(s) ago |
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How true is this statement because my daughter is quite the opposite of this..?? "Phenylalanine plays a role in the body's production of melanin, the pigment responsible for skin and hair color. Therefore, infants with the condition often have l...
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By Piink0188 | 12 month(s) ago |
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Okay so first off, let me say that I just joined PKU.com and I'm not that familiar with how to work things on the site, so bear with me. Thanks. Now, I was just wondering if my twin sister and I are/were the only ones to be taken off diet at th...
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By Zoeysmommy | 12 month(s) ago |
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My daughter was born last Monday, and they did the test on her either the 2nd or 3rd day in the hospital. Well this past Friday I got a phone call from Hershey Medical Center that her PKU level came back and the doctor wants to see her right awa...
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By Kate | 12 month(s) ago |
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Sadly this will be my last post about pregnancy and PKU for probably quite some time. Unfortunately today I started to have a miscarriage - very ironically while sat in my obstetrician's waiting room. I can't help but blame myself though my husb...
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By katiemag16 | 12 month(s) ago |
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I am so frustrated with insurance companies! I have been trying to get an answer from my insurance company on coverage for my formula. The problem is the company who sells my formula AND my clinic states that my formula (Camino Pro Dr...
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By Kate | 12 month(s) ago |
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It's been a little while since I've posted anything because nothing of great consequence has happened and so I didn't think it was worth posting. Everything with my pregnancy and diet is going along swimmingly at the moment. My levels ended up d...
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By dance_N_da_RAIN_13 | 12 month(s) ago |
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I have always been very proud to say i have never done drugs bUT the truth is i am addicted to something that only we would understand. or maybe us who have high levels. my addiction is FOOD and just like a drug...
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By bannie | 12 month(s) ago |
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No, I am not pregnant, lol. Not planning to be until November even if I get my levels down before that. BUT... I have! Well just about. I had 151 on Monday!! It's the lowest I've ever been! I've been told to aim for between 75 and 150 for pregnan...
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By pkusince62 | 12 month(s) ago |
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Even though I wasn't able to get my blood work done today, I started the Kuvan tonight. My plan is to take it every night at 8:10. I hopefully will be able to get to the lab at the hospital tomorrow morning to get a quick blood test. Thanks for ...
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By Kate | 12 month(s) ago |
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I have been doing a lot of PKU cooking and baking recently as being pregnant I'm finding its absolutely essential for me to have a ready supply of low protein snacks on hand at all times. I take formula five times a day and I've got to eat first ...
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