Monday, September 15, 2008

Hello from Oregon!

We have been following this blog for a while, but haven't posted to share our story. We originally found all of this because my husband started a blog for our son Owen. You can find it at

After our son was diagnosed with PKU we started talking about it on our blog and somehow we stumbled acrossed a blog about another little boy with PKU also named Owen.

The last 10 months have been a wild ride, though not all due to PKU. My son has had amazingly steady blood levels, but he has taken after my husband and is proving to be a very busy, thin little boy. We have had all sorts of trouble getting him to gain weight at the "normal" rate. He IS gaining, but because it is not the norm his diet keeps getting switched around. At first we were told since he hasn't gone over 360 (on a 120-360 range) as often as a growing child should without a formula increase, he is probably hyperphe. We even had a clinic visit where we were told to test his phe tolerance with all the food he could eat! (All logged and calculated of course!)This was quickly changed to 150 mg. of phe a day... The latest change has been due to his slow weight gain and we are now on 50 mg. of phe but with a rocket fuel concoction of milk. It includes Phenex-1, Similac and Duo Cal for the added beef-cake effect. Owen though continues to gain slowly. As a family we think the more calories we shove into him, the more he needs to burn it off.

We still hope to test that phe tolerance. After a fabulous week at PKU Family Camp I am feeling more sure of myself as a mother of a PKU toddler. I have no idea what new bump will come our way, but I am sure we will tackle it head on and do wonderfully. Owen is an amazing little boy, growing up faster than his mother would like and we adore him.


Matt & Heidi said...

great to hear the story! thanks for sharing!

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