I am hoping there is someone that can relate. I have a 9 year old daughter wilth PKU. She was diagnosed at 2 weeks old. She was on a strict diet untill she got to be 4 or 5. Her levels always stayed low, so we started to add new things to her diet. Happily, her level continued tio be low even with eating pasta, cheese, milk, breads but at a restricted level. She continued this way for a couple years. Then we gradually stopped monitoring her levels, thinking it would be O.K since her level never got high. A couple weeks ago we decided to see if she was suitable for Kuvan so she had alot of tests done, including her level. Now it is 16!!!!!!! I don't understand how it can jump so high just in a couple of years, and while she was on the same diet. This is very upsetting to us because now if and only if the Kuvan works then she will still have to stay on the same diet she was on before the Kuvan, or maybe even less. If the Kuvan does not work she will have to be on a stricter diet that she is not used to. I am also very worried about her having side effects from her level being so high over the last couple years. I feel like I failed as a parent. A new severe adverse reaction to Kuvan is spinal cord injury!! Does anyone know why that would be, and what the spinal cord would have to do with Kuvan?