My PKUer

This is Zach, my PKUer. What that means is Zach has a metabolic condition called Phenylketonuria (PKU). Having PKU means he is missing an enzyme that breaks down Phenylalanine (PHE) a building block of protein. So every day I have to count/weigh everything he eats! He is allowed 250mg-270mg of PHE a day right now. Just to give you an idea of what that means is for every gram of protein in a serving of food there are approx 50mg of PHE! It adds up really fast! He is not allowed to have meat, fish, eggs, milk or dairy products. his main source of nutrition comes in the form of a formula, Phenex 2, or his "milk". He needs to drink around 24-28 ounces a day to help keep his blood PHE levels between 2-6. To monitor that we do bi-weekly blood draws from his finger and send them to the lab and his dietition calls us later in the week with the results. If his levels are too high or too low we will adjust his daily PHE intake. To supplement his diet with food we purchase lo-protein products from a few different companies that make them (all based outside of MI). I am able to order him bread, cheese, noodles and flour that are all lo-protein. These products are expensive compared to the high protein versions at the local grocery store..ex..our bread $1.29 a loaf vs Zachs bread $9.99 a loaf + s&h. Why am I telling you all of this you may ask? I am telling you first to spread the awarness of this condition, which is tested for on all babies born in the US by a simple heel poke, and its treatment ( strict lo-pro diet for life) and second to let you all know that May is National PKU awarness month! People all across the US will be having special events throughout the month to raise money for PKU research. Michigan is having a walk on May 13, 2006. I will keep you all posted on the event details and information on how to give to PKU research as the month goes on. Please consider giving to reserch in the hope that they will soon find a cure for PKU! Please check out my PKU link or for another good site go to www.michigan-pku.org.