Ianadaya

My son uses Phenex.

I have a 5 year old with PKU. The amount of phe you can consume during a day is determined by trial and error. When they're babies they take blood every week, and then after receiving that level they adjust your diet accordingly. Eventually you only have to send in your blood (they let you take it at home) every month or two months. It depends on how well you maintain you diet.

Phenex is made by Abbott Nutrition.

I have a 5 year old with pku. I was able to breastfeed a month after he was diagnosed. At first I had to mix my milk with the special powder formula, but then they let me feed him from the breast, but that was only because his levels were so good.

It doesn't affect your ability to have children, but women who have pku have to be on a very very strict diet while pregnant. Also, it's recessive, so both parents have to have pku or be a carrier to pass it on.