Avatar of Amanda


September 3, 2011 in Uncategorized

I am 18 years old, and i have PKU. The way i live my life is based on my diet. My diet is just fruits and veggies. I have just recently graduated from high school I graduated with Perfect attendance for 13 years never been late or tardy in my life. All my life my phe levels have been up and down. My Dietician who had my case never helped me. She would take my formula and give it to the other kids. So i wasn't getting the medical stuff i need. I just recently told her to leave me alone and i will take care of it on my own. Since i have turned 18 i have been majorly stressed. I cant get my formula anymore unless i can pay for it but i dont have a job or am i on social security. I have tried 8 times to get on social security including the help of my parents when i was little. While i was growing up i had a lot of problems ones that would scare most parents and in my case it did. I got in bad stuff after my granddad passed away i started cutting, staying out late, drinking and getting into trouble. Is this normal?? I have been thinking that maybe drinking my formula is making my blood levels go up and down. i have not been drinking it only when i feel extremely weak? What should i do? alt

2 Reviews of ME

  1. Registered: Jul 13, 2011

    Posts: 0

    Parma, Ohio

    Hi, manda93! I’m 18 also and have a baby girl with PKU. I know that going through alot and being stressed out is all part of being our age. Everyone handles stress differently, so yes its normal! But on the other hand its not a good way to be starting out your adult years either. I know that staying on a strict formula diet is very important. By not drinking it everyday like your supposed to is why your levels have been so up and down. Once you get on a regiment and by staying on your diet I assure you that your phe levels would be normal. As for everything else you sound like you have a good head on your shoulders so stay strong and save the drinking for your 21st birthday! ;)

    P.S. Depending on what state you live in there are PKU food and formula banks! So do some research and find yourself the proper formula and I wish you the best of luck!

  2. Registered: Jul 16, 2009

    Posts: 0

    Kansas City, Kansas

    I understand completely. I’m 32, CPKU. I went through depression and such during high school also, had the same kind of probs for my dietician also. LOTS of factors can make fluctuation in levels, I woild to talk with you and give you advice. I have the same ins & $$ problems right now. What should you do?? hang in there I know you’ve heard that, it will get better. The formulas and stuff have to be gauged by ur weight and activity same with ur protien intake. I would REALLY like to see if I can help you if not just give you a sounding board. Find me here or facebook.

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