3 weeks on kuvan

3 weeks on kuvan

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3 weeks on kuvan

December 29, 2009 in Uncategorized

My 10 y/o daughter Amber started Kuvan 3 weeks ago. Her levels stayed at the 9-10 range on a half restricted diet (2000mg phe daily) with the kuvan her levels dropped to the 2-3 range!!!! She is definitly a responder!! We are so excited for her to start eating new foods, slowely of course.. we have also already seen a huge improvement in her behavior, learning skills, ect. Thers only one problem,,headaches almost daily. Her nutritionist says her levels may be getting too low. so we have to look at uping her phe intake, or lesson the pills. Either way i think Kuvan is going to benifeit her greatly,,but hope the headaches go away.. Anyone on Kuvan had headaches???

4 Reviews of 3 weeks on kuvan

  1. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    Yayyy – so happy to hear Amber responded!!! Def make sure to record exactly what she is eating. My levels actually went below 2 — close to .02 in fact. I had to increase the amount of protein into my diet. This was of course with ALOT of monitoring from my doctors. I have been on Kuvan for 2 years. In the past year, I have started to really be monitoring what I eat and how much my body can actually handle (natural protein wise). It is really important to understand this — because I did not in the beginning — everyone responds DIFFERENT. I’ve met people who can handle 40 grams of protein, 30 grams, 20 grams, and simply no adjustments to diet. As stated, work closely with your dietitian — but in the end, the hard work is soooooo worth it! If you have any questions – please feel free to ask me! Congrats again!!

    Ohhh and no… did not experience headaches with Kuvan…. However, I did tell you my levels did go below 2 and that definitely could be contributing to her headaches. Also, it is a pretty drastic decrease in PHE level for Amber. I am sure once her levels are stable, she will feel better. Happy New Year!

  2. Registered: Feb 26, 2007

    Posts: 0

    Chicago, Illinois

    Congratulations…I’m doing my Kuvan trial right now…I’m anxious to see if my levels have dropped at all…I’ll find out early next week! I hope it works for me too =)

  3. Registered: Sep 12, 2006

    Posts: 0

    Franklin, Wisconsin

    Congrats! I am so happy for you, Amber, and your whole family. This is definitely exciting! Like Katie I began Kuvan over two years ago. My baseline phe level prior to starting Kuvan was 2.4 mg/dl, so by the end of my first month on Kuvan my phe level had dropped all the way down to 0.1 mg/dl! As far as headaches go I did experience minor headaches at the beginning of taking Kuvan, but we are not 100% positive whether or not these headaches were caused by Kuvan. In my case the headaches went away on their own. My dietitian told me the headaches might have been from having such low levels, and I cannot remember who told me this, but someone else said it might be from having such a rapid drop in phe levels in such a short time. Once again congrats! Good luck with hopefully increasing your daughters phe intake, and if there is ever anything I can do to help please let me know.

  4. Registered: Sep 25, 2016

    Posts: 0

    No Location

    Hello! I need some advice. I’ve been on a low protein diet for about 2 1/2 years now. I’m trying to get my levels down so I can get pregnant. My levels now range from 5-9. I can’t seem to get them low enough. I’ve been thinking about taking Kuvan to get my levels down. I want to know if anyone has taken this during pregnancy? I don’t want it to affect the baby during the pregnancy. Any opinions would be helpful! Thanks!

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