Sunday, December 9, 2007

PKU update

This post is: 
So, it's been a more than a few weeks now of living with PKU. We'll try to fill you in a bit on what we've learned.

A few basic pieces of terminology:

Phenylalenine: This is the amino acid that Owen lacks the enzyme to process normally. It is one of the basic building blocks for protein. Learn all about it here. You may hear us just call it 'Phe' (pronounced 'fee')

Phenex-1: This is the formula supplement that Owen gets daily. It is a special product that is phenylalenine free, but helps to meet the rest of his dietary needs. It is crucial that we always have access to a sufficient supply of Phenex. Apparently, 'Phenex' is also the name of a demon in some sort of mythology. If we're talking about Phenex, we're not talking about a demon, we promise.

Tyrosine: This is another amino acid, which would be a byproduct of phenylalenine in a normal metabolic process. In Owen's case, he gets his Tyrosine from the Phenex.

Medical Foods: You may hear us talking about 'medical foods' or, 'Phe free' or 'Phe reduced' ingreditents. Basically, all we're talking about is a class of foods that have been altered to contain less or no phenylalenine compared to their 'non-medical' counterparts. Flour, pasta, crackers, jello are just a few examples of some medical foods. The goal of such foods is to allow a more normal diet without exceeding the phe levels that Owen is allowed.

Asparitame: This is an artificial sweetener that most people know as 'Nutra-Sweet.' One of the main ingredients of this is phenylalenine, so this is completely off limits. Give him the real stuff! If you notice on a can of Diet Pepsi, under the ingredients list, there will be a warning about Phe, just for folks like Owen. I'd bet you don't have a warning on any Pepsi cans especially for you!

So, enough with the dry information. The reality is that dealing with PKU at this point is really not that bad. Sure, it's not every kid that gets a blood test every 3 days by pricking a hole in his foot... but Owen isn't the only guy that has to deal with it either. Mom and Dad did the first unassisted blood test last week, and we would have to estimate the 'cry time' at well under one minute.

Also, the daily bottle of Phenex is, in a way, nice. It is giving Dad a few more opportunities to feed Owen, which some dads don't get a lot of chances to experience. Some people were concerned about nipple confusion when introducing Owen to a bottle so early while still feeding natural milk, but he seems to be just fine. The only real issue is that he eats a lot... A LOT!

Our next appointment at the metabolic clinic at OHSU is coming up soon. We'll share more after we get the results from the experts...

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