How Much Formula??

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    • How Much Formula??

      Dear All,

      I have a daughter who is almost 5 years old with non-classic PKU. Since she was around 1.5-2, we have had a very challenging time getting her to drink her formula. We have had some negative experiences with our PKU clinic and not being clear on all of the information (like how much protein she could actually eat, etc).

      They have said that based on her weight/age/etc., she should have 6 scoops of Phenyl Free 2 per day. Her levels are almost always between 2-4, very rarely touching up towards 6 (even when she was born they were only around 10-12).

      As parents, we feel like part of our struggle with the formula is that we don't have confidence in how much Phenyl Free she really needs (often times she finishes 1/2 without a problem, but not all of it). We are working with a psychiatrist to help with the issue, but we are having trouble pinpointing how much formula she REALLY needs, not how much is recommended.

      Calculating the formula needs seems like a lot of guesswork and estimating, but we feel like a lot of long term harm has/can be done by the struggle with drinking the formula, and if there was a more concrete amount, a) maybe she would have to drink less, and b) we would be more confident that we really know she has to drink as much as we're trying to get her to drink.

      If anyone has a good dietitian or doctor or anyone else who would be good to contact, I would be happy to know.

      Thank you in advance!
    • Dear Ammahler,

      you're right - there's always quite a lot of guesswork involved when it comes to the amount of formula our kids have to take.

      To get an overall idea you can calculate yourself: there are online calculators where you can inform yourself about the amount of protein a child of a certain age and weight needs. Substract the protein your daughter gets from natural food. Then you've got the amount of protein she has to get from her formula. In the information that comes with the formula you will find how many percent of it are pure protein substitute.