Tuesday, December 18, 2007

PKU update

This post is: 
This Monday, Owen, mom, dad, grandma... er... mimi and grandpa all took a trip north for Owen's second appointment at Dorenbecher, which is only the second of a regular, probably monthly, visit schedule. This was my (dad's) first visit up to the clinic as the first visit was obstructed by a business trip to Reno.

So, everyone is probably wondering how things are going on the PKU front. The short answer: great! The long answer... well, the long answer is that his phenylalanine levels have constantly been under the upper limit for a 'successful diet' up till now. Right now, we have Owen on a fixed amount of the special formula a day, so as he grows and pulls in more calories, they are coming from the source that does contain phenylalanine... so his levels are expected to rise, but we're not quite to the point yet where we need to adjust the diet to compensate. That'll probably happen soon... but not yet.

The good news from the visit to the clinic is that Owen's weight is in double digits! He tipped the scales at 10 pounds 1 ounce, so he's growing quite well. Dr. Amber (Owen's doctor in Roseburg) said they like to see one ounce per day for healthy growth... and he's been tracking at one and a half for 3 weeks. He's not only growing rounder... but taller too. He's right at 22 inches now. So, at this rate, by the time he's 30, he'll be 15 feet tall and 720 pounds. Well, maybe not. And, please don't check my math there. I think it's close... but I beg the accountants in the family not to try and verify those calculations.

So, back to the PKU stuff. A few things that came up at the meeting with the dietitians: The big thing that's been discussed in the PKU world is Kuvan, a pharmacutical that was just approved last week by the FDA for treatment of PKU. The main thing that everyone needs to know about this is that it does not 'fix' PKU, but instead it just helps those who are on a low-protein diet keep the phenylalanine levels down, which is the goal of a low-pro diet in the first place. But, if anyone tells you that there now exists a pill to fix PKU, they are mistaken. We don't know yet if Owen will get to use Kuvan at all. He'll have to wait at least until he's 4 years old as that's the age that they've approved Kuvan's use for. So... time will tell on the drug front. And, who knows... there might be more developments in the pharmacutical front sometime down the road. But, for now... we've got the time tested low-pro diet as Owen's best plan of attack.

Another thing that people need to know about Owen's PKU treatment is that he is getting top-notch care. Stacey and Kathleen, along with the rest of the metabolic clinic staff, are absolutely top tier. Talking to them during the visit, it quickly becomes apparent that they are not only well versed in the care of PKU kids, both from the metabolic standpoint (the technical aspects) as well as the social parts (which will come in later once Owen starts melding his thoughts in with the rest of the community members born in 2007.) but also well versed in becoming a kid's good friend. They really offer a full person approach to making sure the pieces are in place to allow for normal (or, possibly beyond normal) development.

So, this brings everything to how we're going to approach PKU from here on out. PKU, technically, is a metabolic condition caused by an enzyme that is not functioning normally. Even so, it is really just a thing. There are many things that can cause someone to have a special diet. Some people have political reasons that keep them from eating certain foods. Some people have religious reasons. Some people just can't get through the thought of eating green things or mushy things or things that are fungi or things that aren't cooked. Heck, some people don't eat things that are cooked. So, there are many different things that are great reasons that cause someone to have a special diet, and PKU is just one of them. There are far tougher battles that so many young people in our state fight on a daily basis than something that restricts a little guy to a specialized diet. It may seem like an extremely restrictive diet, but a diet is just a thing. And, a diet is just a small part of who someone is. Unless you're Emeril Lagasse or Jamie Oliver. Or Rachael Ray. And, this thing? We can handle it.

This trip up to OHSU was a good one. It looks like Owen is probably one of 5 kids born in Oregon this year with PKU. It also looks like we're part of a community now that lives wonderful lives with the low-pro diets and the specialized foods and the frequent blood tests. There won't be any restrictions on Owen being able to partake in Dad's outdoor adventures or Mom's worldly travels. We'll just have to do a bit of meal planning. That's all.

Let this be a warning to any of you who might be getting some hands on time with Owen over the next weekend... he's no lightweight anymore. You're going to have to bring your A game.
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