PKU Awareness Month

Educate.  Advocate.  Inspire.

May is PKU Awareness Month!  I want to take a few minutes to shine some light on this subject that
most people know nothing about.  I have found some great bloggers recently who have really given me some great inspiration, about both PKU and life in general.  Check out my Favorite Blogs list and pay some of these folks a visit!

Feel free to check out my PKU tab at the top of the page to read some detailed info about PKU and our personal experience with it (I have updated it just a bit today).  We have such a whirlwind of things going on in our life right now, just finishing up our first Autism Awareness Month, and then running right into the same for PKU!  I hope everyone will take a little time to read about this rare disorder and tell other people about it.  Education is the first step!

I hope to devote more time to working on this blog in the near future, to make it more helpful, supportive, and useful.  I plan to add more info about traveling with PKU, which seems to be a highly searched topic, as well as eating out.  I don't have much of a need for recipes right now, so I probably won't be very helpful on that subject, though I love to read them anyway!  I also have a dream to start some kind of local PKU group.  Alabama has only a small number of people who have PKU, so I know it has not been easily done.  I mainly just want to create a place where everyone in Alabama can go to find resources, information, and support.  Any advice or wisdom would be appreciated, if you would like to chime in.

Carson and his PKU Diet

I like to give an update from time to time about Carson and his diet.  (note:  Some of this info is also included on the PKU tabbed page, in case you don't want to read double!)  Lately there hasn't been much to update.  He is still picky as ever and not much has changed about his diet.  He has finally had a little growth spurt, after remaining the same size for about a year, so I think his diet needs might change a bit soon.  He transitioned well from his PKU formula for infants and toddlers, Phenex-1, to the adult formula, Phenex-2.  He did not give me any problem about drinking it, and right now he still wants it and asks for it all the time.    I also know that if his taste for it ever changes, there are so many options out there now for him to choose.

He still only eats bananas and applesauce for fruits, and broccoli and cauliflower are his only veggies.  He likes tomato sauce, so he eats lots of pasta with sauce and I even made alphabet soup.  Pasta serves as a great facilitator for new food tries (as does lopro rice).  I made pesto sauce and he loved that; I also make stroganoff from time to time, mushroom soup by itself on the pasta or rice, lopro mac and cheese, or veggie broth (I don't think he was crazy about that last time).  He loves his bread now, thank goodness, and will eat a sandwich any time (lopro grilled cheese or Biscoff spread), plus I make rolls and breadsticks out of it for him to have with meals, especially when we eat rolls too.  He eats homemade lopro chocolate chip cookies every day.  It's a struggle to keep those baked!  That's his favorite!  And for breakfast, his no-fail Chocolate Cheerios!  Or sometimes lopro pancakes...

For a while he would eat blueberry muffins, but this last batch has been allowed to ferment.  He refused to eat them after just one bite.  And so we continue with the normal frustrations of a young child and his picky eating habits...just with a special diet.

His current weaknesses, or higher phe foods that could cause him trouble in the future, are Mexican food and potato chips.  We have a fave Mexican restaurant in our town, Buena Vista (shout out!), where he loves to eat tortilla chips with salsa, and a side of Mexican rice.  He also loves potato chips, and occasionally is allowed to eat tater tots or hash browns.  These are the only forms of potato he likes!  I guess we should be thankful!  On those days, we just have to figure something low in phe he can eat to make sure he doesn't get too much.

We are very blessed, though, that he does not seem to mind right now if we are eating something different from him.  I try to downplay the fact that Maggie eats the same things we do by being very discrete.  I have noticed that Carson watches on occasion, but he has yet to react or say anything about it.  We have tried to never make a big deal out of it, and our rule has always been "no eating off each others' plates".  If I have something Carson can eat, I put it on his plate myself, I do not let him reach onto my plate, so I do the same thing with Maggie.  It still works...so far.  Maggie has come along to shake things up now! 

To see what products we currently like to use, as well as an embedded link to find low protein foods, click on my PKU tab above. 

Happy PKU Awareness Month!  Don't forget to Share the Love!