My son was about to start the Kuvan. His last level was 11.2 and this week it is 0.2! His dietician says we have to wait until his levels are staying the same every week before starting Kuvan. nSo my ? is to everyone… How do you know if this stuff is working or just a rise or drop in levels?
I started taking Kuvan almost a year and a half ago. When I started my dietitian said the only way we would be certain Kuvan was causing my levels to drop would be to consistently eat the same amount of phe. This means your son will need to be strict about what he eats to be sure that he is eating about the same amount of phe each day. If his levels consistently stay the same like they normally would if someone off of Kuvan were to eat the same amount of phe then Kuvan is not working. If his levels drop despite the fact that he has not made any dietary changes then Kuvan is probably working. I hope this helps!
My son started taking Kuvan early last year. We had the same problem as you had before he started so we had to wait until his levels were consistent and his records were accurate. nHis levels weren’t terribly high and he was extremely sensitive to small changes in diet. When he started on Kuvan he had such a good record of his phe intake and his blood phe that we knew the changes in his levels were a direct result of Kuvan. Good luck