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Hello everyone! My name is Missy. I was born on 2/2/1975 and within 2 wks of life I was diagnosed with PKU and put right on the diet. I spent a week or more in the Cleveland Clinic hospital in Cleveland Ohio. I don't know if they have the formula I was on when I was younger but I was on Lofenlac. As I got older they then mixed Lofenlac with Phenyl-free. Eventually when I hit my teen years I was strictly on Phenyl-free. I've never been off the diet per say although for about 5 years or so I didn't have the formula and low protein foods. I was in a bad marriage where my ex husband was abusive and I was not able to get the foods or formula. But I did devorce him , but after that it was really hard financially to get the things I needed. In February of this year I remarried a wonderful man. He and I scheduled an appointment with the PKU clinic here in akron Ohio and they explained to him what it was and what the diet would consist of. Of course I knew all this stuff but really looked forward ro getting on my phenyl-free again(I liked this formula). To my suprise I found out they got rid of making phenyl-free and now make phenyl-free 2 vanilla. I was shocked but didn't think it would taste that bad seeing as I liked the regular version. WRONG! I am still trying to get used to it. I just can't seem to. But I do drink it. I force myself. Well anyhow.....My husband, Ruben, and I are starting the maternal PKU process so that we can plan to start a family. I am finding it tough to make sure I only eat the amount of PHE a day I was perscribed by the dietician. I get 200mg of PHE a day. There are days when I'm at home and can do it easily but when I have a full load of things to do or I travel it gets hard to stick to that. My first visit back to the clinic back in March my level was high. It was 35mg/dl (remember this is the first time I had my levels taken in about 5yrs or so as well as following the diet strictly again.) Well, the dietician then ordered my formula and I went back again for levels in June....my level then with only having formula was 29.2 which she said was good that is was going down and that it would take a little bit of time. I ordered low protein foods from dietary shoppe and then went back in for another level on August 4th.....my level was 24.6. It is taking some time, which the dietician sais is normal, but it does get frustrating. |
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