Community Discussion Forum Adults and PKU adults and pku Reply To: adults and pku

Avatar of Breanna

Oh no! Sorry to hear that the clinics are all so far away from you! And don’t worry, it’s really hard to bug me I’m usually the one doing all the bugging. I’ve done a bunch of school reports on PKU and my doctor and dietitian asked me to give a lecture last Oct about what it’s like to live with PKU AND I want to become a medical geneticist so that’s probably why I know what I do.
I usually go to clinic once a year (or twice if my phe levels are out of whack). But I’m not on the new drug Kuvan so I go every 2-3 months. I do my levels at home and send them into the state lab here in Wisconsin, so no I don’t have to go in to get blood work done. No matter what I think you might have to go for more appointments then the once or twice a year.
Do you have the number to where you used to go when you were a kid? Maybe they just aren’t on that list because they don’t treat PKU anymore and they transfered somewhere else.
As for formula, if your asking if California will cover the cost of it then according to this link yes. Here in Wisconsin I get my formula/food through The Children’s Hospital’s warehouse (I go to Childrens for PKU appointments).
I hope this helps! nBreanna

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