Community Discussion Forum New to PKU cure? Reply To: PKU cure?

Avatar of Breanna

Hey Jenn, Sorry I didn’t see your reply until now. I have been busy helping put together a play that the seniors at my school will be putting on this week.
When I was younger I was very, very hyper. Part of that is probably just because that’s my personality , but I have had people comment that I’m a lot calmer then I used to be. I am also happier. Throughout middle school my mom and I fought alot and I had a very short temper. I’m not sure if this has changed because my levels are lower, or just because I’m getting older. One thing is for sure I’m not falling asleep in class anymore (which I did a lot 9th and 10th grade)!
Before I started Kuvan my level just happened to be low, it was 2.5mg/dl (150umol/l). A week later we did a blood test and my level had already gone down to 1.7. The following three weeks my levels were 0.4, 0.2, and my level went all the way down to 0.1mg/dl by the end of the month! So I definitely started to respond immeditially. At the end of the month my dietitian decided it was time to increase my phe intake. I added 60mg of phe, but that only brought my level to a 0.3 (I think) and now I’m up to 1000mg of phe. We would have begun increasing my phe intake sooner, but because I started Kuvan during a study and before it was FDA approved my doctor and dietitian needed unbiased results. In another words they wanted to be sure I was responding and not just lower my intake to make it look like I was responding, not that I would ever do that lol!
I have not had any side effects from Kuvan. Like I said Kuvan was offered to me threw a study, so I had to report any issues, no matter how big or small, to them. I had trouble sleeping acouple weeks into taking Kuvan, but it corrected itself very fast and I have not had issues with that since. We don’t even know if that was linked to Kuvan.
To be honest I haven’t changed a whole lot in my diet. I eat regular bread and tortillas instead of the low protein stuff. I tried pasta, but I don’t eat it because I prefer ours. For the most part with Kuvan I am just able to be more lenient with what I eat. Rather then eating only a small handful of chips when I’m with friends I can have just as much as my friends would eat. There are actually days when I have to add regular milk into my formula at the end of the day to get all my phe in, but that’s just me, there are probably tons of foods I could try…but I’m just content with how things are right now .
If you try Kuvan, good luck! If you don’t, once again good luck! It’s a personal decision. At the time that my parents and I made the choice for me to go on Kuvan the pros just out weighed the cons. For me it was either continue having unstable levels that were perfect one month and then sky high the next, or give Kuvan a chance.
I am a bit worried about the longterm effects of Kuvan, but like I said it has been used for other disorders. We should also remember that the diet hasn’t been around forever. If I’m correct the oldest people with PKU who were treated since birth are in their late fourties now and even then a lot of them were taken off the diet when they were children. This means the oldest people we have who have been on diet since birth are in their thirties (or something like that) so we don’t know what could happen as we age. In the long run our diets of fruits, veggies, etc might be healthier then others around us, then again who knows getting artificial protein from our formulas might pose it’s own problems. For now I’m just going to worry about the present because twenty or even five years from now who knows what the treatment for PKU will be like.
Anyway, that’s enough from me! nBre

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