Owen continues to do well on Kuvan. His levels are back down to a 5 after a week at 7. After some discussion during the Summit and a couple of emails to his nutritionist, the decision was made to up his formula intake. We are doing this in hopes of breaking the awful cycle his body has been in for over 10 years. He is so thin and anytime he puts on just a little weight, his body goes into overdrive and attacks his muscles and such. It leaves him tired and achy and weighing less than before. I have seen him go from 98 pounds to 105 and then painfully back to 97 in a very short time.

How did he get this way? By not being completely on diet, feeling guilty about what he was eating and not taking all of his formula. He was still eating vegan, but not monitoring his intake and allowing guilt to tell him we was eating too much. Had he been weighing food and monitoring intake, he would have seen that he was only eating 800 calories a day! Even with being back on track for three years in his diet, and now on a wonderful formula for four months, this cycle has been horrible to break.

Please, please, please, help your loved one stay on diet and keep up with the formula. Most of Owens medical issues (if not all of them) have come from his time when he was off track. He did not have the support he needed. Now he does and we are looking forward with hope that increasing the formula will bring his weight up to the point that his body stops attacking itself.

Stay tuned for "On The Road With PKU" our road trip to his sisters wedding!