Latest PKU News

There are a few developments on Owen's PKU front. Up until earlier this week, Owen's phenylalanine (phe) levels had been staying very low. The 'target' range is to keep his phe between 120 and 360, in the units used to measure the chemical's concentration.

The blood test up in Portland was the first test since his cleansing period to give a result that was above the 360 level. It was in the mid 400's.

This was expected. Owen's diet consists of natural milk and Phenex formula, and the Phenex is a fixed amount a day. As Owen's appetite increases, the amount of natural milk fills his need for extra calories, basically reducing the proportion of Phenex he gets in a day.

Now, that's bad, right? Isn't phe the stuff that's bad for Owen? Well, yes... it is. But, the response to this is really quite simple.

Previously, Owen had been receiving 6 ounces of Phenex a day. Now, we give him 8. Theoretically, that's a shift of 4 fluid ounces a day in his diet. The hope is that it brings him back down into the ideal range, and we'll stay at that level until his Phe readings go above the threshold again.

This would be the main reason for the blood tests every 3 days, to have ample opportunities to track phe levels.

So, not a big deal. This is easy to deal with. And, the added benefit, especially during the holidays, is that more Phenex a day means that more Aunts, Grandmas and Grandpas get to feed him with the bottle. And, more chances for Dad too.

That's the current state of the PKU.