PKU.com Community Discussion Forum Parent support Just wanted to talk… Reply To: Just wanted to talk…

#6068
Avatar of amanda
Dresmum
Member

hello Billy.
I am Amanda and I am 19. Im not a parent either but I may be able to help a bit. I was put in my grandmothers care at a young age because my parents had me too young and could not take care of my pku. I finally moved with my mom at 7 and she never knew how to take care of it. My step dad had pushed me to drink the formula and eat right. When he left my mom said that at 15 my brain was developed and the diet didnt matter. For the last 4 years I have not been on the diet or the formula, and I can honestly say I am seeingchanges in myself.. its scary.. Having too high of levels is not a great thing or maybe eating wrong sometime, but I think that by you taking the time to write that you care. It sounds like you have an idea of whats going on with your son. I wouldnt blame yourself. I think you are helping him. My parents never helped me and now Im doing all I can to try and get back on it so I can one day have a healthy family of my own. Hope this helped some… just be there for him.
***I know its gross, but it always made me feel better when my dad would drink some of my formula with me just so he knew how bad it tasted***

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