PKU.com Community Discussion Forum New to PKU.com Research for a project Reply To: Research for a project

#9459
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pku123
Member

 Hi guys, I'm new on this site and its because Im doing research and a presentation on people who have PKU.
I've done alot of research this past week but im still a little confused! I was hoping anyone on this site would be able to help :-)
I understand people with PKU need to drink a formula starting at a very young age. Does one drink the formula forever? I watched a few youtube videos where a pku patient was taking supplmental pills AND a formula. Is this needed? (what are the pills?–do you take the pills instead of a formula when you get older?)

Basically, Im just wondering–what supplments MUST somebody take everyday if they have pku? and Wha are the phe levels that you MUST stay under/above? Are there certain corresponding numbers or a ratio of phe you must stay under? I keep seeing refrences on websites about maintaing certain Phe levels/numbers….but can anybody tell me what this is?

Thank you all so much!! youre all amazing!!! and I'm glad I have the opportunity to do a presentation on PKU and learn more about your lifestyles!!!!

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