I haven't found a solution but a few promising leads, and the main reason I'm writing this post is to ask any PKUers or PKU parents if they feel the same way, and what they do. I've found a product from PheylAde, their amino acid blends...
A phenylalanine-free, powdered medical food for the dietary management of phenylketonuria (PKU) in toddlers, children and adults, including pregnant women and women of child-bearing age.
I haven't done enough research on this product to have a full opinion, but it seems like a much better option than formula to me. I'd have to make sure that MK got her vitamins from foods and supplements at different times of the day, but this seems to be better for her little kidneys when she is a toddler and she'll get all the amino acids that she won't receive on a low-protein diet.
Anybody want to share their experiences with me or even their opinions? E-mail me at pkumomma@gmail.com please!
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