Owen has been "naughty" and has not had his levels checked since October 31st. With him being on Kuvan, this is not recommended. However, he either wised up, or got tired of my nagging, and had it checked. He is still holding steady at 8. This is a little high compared to when he first started the new formula and Kuvan. He had three weeks at 6 and one week at 4. He felt lousy all of those weeks. For someone who was at 11 to 13 on his old formula (which we wasn't taking enough of), 8 is good. For someone on Kuvan, we were hoping for a better level. However, he is still responding mentally/cognitively. His neurologist is happy at the progress and with the cognitive function test done right before Owen started the formula and Kuvan. He wants to repeat the test after Owen has been on both for awhile.

The neurologist also wants to become more involved with PKU research. He has written several published reports and articles on the effects of other genetic metabolic disorders. We are going to contact BioMarin and see what they can do. There are a few PKU adults in the area that he can work with. I'm not sure if there are any children though.