Friday, October 8, 2010

My son and PKU

Many of you know that my son Kyle(9) has a disease called PKU(Phenylketonuria), I would like to show you a little more about his daily routine. I have blogged about his disease many times and also have a PKU facebook page because the state of NC started to cut funding so we all had to band together!


Mornings - Make milk(prescription formula). This milk is a necessity to a PKU dieter! They must have this milk, without the milk they will become metabolically unstable and can (will over long period) become mentally retarded. This is the most important part of his day!


This is his milk - Phenex 2

This is Kyle making his recipe for his daily dose of milk.

Next:


Another thing he also has to take is his PKU medication - KUVAN. This is a new thing for us that started about 3 months ago. This medicine is wonderful, and for those of you that know me understand that's hard for me to say!! I never take a Tylenol!! LOL.... The Kuvan lowers the blood phe level! Kuvan functions just like BH4, which is a substance that naturally occurs in the body. High Phe levels are toxic to the brain that's why its so very important to keep his diet under control. I would never risk the safety of my sons health! NEVER! His diet is a daily part of our life, Its handled with the most of care!

Some days he will dissolve in apple juice and others he eats with apple sauce.
Kyle gets 22 protein grams daily. To ensure our calculations are done properly we keep a daily food journal. I wrote it until he was about 6/7 then we started making him be responsible for keeping up with it. After all it will always be a part of his life, so we have to make sure that he understands that he must do this every day. Everything that goes into his mouth is wrote down on this journal, from an apple to gum... Everything!
Kyle understands that he is special because God made him this way, my son loves the Lord and I know that the battles he will face as he grows to maintain this life, so I pray that the Lord watches over him and helps him continue to have this positive attitude!