Hello readers!
It has been an interesting past few weeks. As most of you know, I started my Kuvan trial!!
I started taking the pills on February 5th. I was told, by the Kuvan Metabolic Specialist, that the pills are very acidic. She wasn't kidding! The first day I took my dose with water. I put the water in my mouth first, nervous of what was coming next, and dropped the pills into my mouth. As soon as the pills touched the water it tasted as though I had squirted lemon juice in my mouth! It was so sour!
Enough about how it tasted, now onto the more interesting stuff. The day I started Kuvan, February 5th, my blood Phe level was 347. The next day, February 6th, my level went down to 200. I thought that was awesome!! My Metabolic Specialist was very pleased. But that's not all, on the third day, February 7th, my blood phe level dropped to 89!!
So, with that information, Dr. Huntington is wanting me to finish out the trial (of course) and then try adding more protein to my diet. She was even talking about an egg everyday or adding fat free dry milk to my formula. I am more excited about the possibility of getting to eat an egg, but I'll have to try the dry milk, too.
Anyways, that's all I have now. If you have any questions or comments don't be afraid to contact me on the Facebook page listed below.
Until next time,
Phe
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