Monday will mark four months since I had my son. Its been a real roller coster with my phe levels and sadly the lowest they were was when I was in labor with Bentley. Which was a 3. But they quickly shot up within 24 hours of not being able to solid foods and the drs or nurses didnt seem to really understand pku. Besides the fact they tried to googled it. Which was pretty obvious because the dietation came in with a packet of information about pku. But thats what happens when you have a rare disease! Lately I have felt that kuvan has not benefit me in the same way that it had during my pregnancy. I was never the fortune type that was able to eat more phe because it works so well. Although I always hope that taking kuvan would drop my phe levels low and in a good range to be able to eat more forumla. But unforuntatly thats never happened for me. The question is why?? Ive been taking it so long. Is my body so use to the drug it wont work anymore? Is the dosage not enough for it to work? Or is it just in the plans anymore? So many questions swirl in my head. And I wish I could answer it on my own. Sadly im still very confused. I know that my husband and I are not done having children yet. Which is big part of the decision in this. But there also alot of side effects to take in consideration. It would be nice to try something new like palynziq. But would my body react well to it. And the only way to doing that is by trying it. Hopefully I figure out whats best for me and god leads me in the right direction soon ❤
