MickRaider

My PKU brother used to get mad at me because i prefer sorbet to ice cream.

Ice cream just makes me thirsty, sorbet is nice and refreshing.

My mom did not breast feed my PKU brother and sister. They were fed their special formula

Yup! I got pricked twice to make absolutely positive I didn't have it. I'm the youngest and lucked out.

My brother and sister drink beer though I'm not sure how much protein it actually has. Some, but probably not in the grams range. Usually they can have around 10-20 grams of protein a day.

I was gonna reply independently asking about Kuvan, but since you mentioned it I'll reply here.

To start, I'm the youngest of 3 and both my older brother and sister have PKU. I know quite a bit about PKU as you can imagine.

What's keeping you away from Kuvan? My sister was actually involved in the clinical trials and now she's one of their spokesman. Naturally she loves the stuff and is a big proponent. She recently converted my brother over and he's incredibly OCD and doesn't take change well.

I also don't understand what you mean by temporary?

Also I believe a liver transplant works as a cure, but you'd never get approved for one.