PHEarless in Texas

Howdy!  
I started this blog because I wanted to keep all my resources in one place.  If you want to know more about me, click the "Meet Annaliese" link to the left.  Below that, and below the calendar are a list of tags/topics you can find in this blog.  Click on the topic to view all posts on that topic. 
Feedback is absolutely welcome.  No need for full names, but some kind of identifier is nice (like "Sally, 35 pku in Hawaii", for example) if you choose to use the comment feature.  You can also email me privately:   email

Thank you for stopping by, and I sincerely hope this blog is useful!

-Annaliese

I haven't updated this blog in a long time.

So... I challenge you to challenge me and ask me questions about pku.
I will do my best to find and post an answer.

You can comment anonymously.
I'd appreciate a first name/location/relationship to pku/age but it isn't necessary.
If you ask a silly question you'll get a silly answer.



Disclaimer: I'm not a medical professional of any kind. This blog is not intended to diagnose or suggest treatment of any disease. Views expressed here are not necessarily the views of the pku community. In other words, if you have a real problem go see a real doctor.

This is my new favorite PKU hangout. I've been signed up for a while but only recently started using it a lot. Forums, blog, phe level tracker...

http://www.pkuboard.info

FDA Nutritional Content

http://www.nal.usda.gov/fnic/foodcomp/search/

I have not used this myself but others say it has helped a lot. It can certainly be more mobile than the phe binder and it seems to offer per piece/per serving measurement unlike the iPhone app.
________________________________________

If you weigh your food or just need a general idea if something is high or not, check out the new iPhone App

http://www.cambrookefoods.com/dietwell/app.php

As always, a great experience and quite eye-opening for someone who rarely leaves her own city most of the year.  The PKU Adults meeting before the conference was a lot of fun and we got to see some incredible things in Turkey.  Eventually I'll have some pictures for your perusal and a link to the meeting summary.

For now, I'm just trying to get caught up in life and work.  :)

...and the only non-truck-stop food place on my new 22-mile commute from Austin to Elgin, TX

Corn Dog wacky pack kids meal (with apple slices) is 6g protein
Grilled Cheese wacky pack (w/ apple slices) is 12g protein

Still not going to touch the meat, even if it is questionable whether it is meat or not.  I just don't want to know what it tastes like!

News I like:  Jr Candy Sundae with oreo bits is only 1 g protein!  The other types are 2g each.

Sorry for the weird update.  I'm getting ready to leave for Turkey tomorrow for the ESPKU meeting in Antalya Turkey.  Should be fun!  I've ben super busy, between moving my office and my home and preparing to be out ot the office for over a week.  If I have reasonable access I will be posting from the conference on my twitter account (twitter.com/pkutexas)

Look for a PHEarless Retreat update over Thanksgiving break!

Mark your calendars now! 

The dates are March 5-7, 2010

Check back every month for updates!  Cost is yet to be determined.

Who:  Adults with PKU and their spouses/significant other
What:  Weekend retreat with discussions, activities, cooking, and all around good times. 
Where:  Camp For All near Burton, Texas - A wonderful facility we've worked with for many years
When: March 5-7, 2010 (4pm Friday - 1pm Sunday)
Why:  Camp PHEver graduates need somewhere to go, adults with pku need support, and it is just plain fun!

Check out the new PKU.com

I am listed as AntInTexas

The new design is extremely user friendly and very easy to navigate, especially if you are already familiar with websites like facebook and myspace.  You can add a pku blog, make friends, instant message (just like facebook!) join chat rooms, all kinds of fun stuff.

This is my favorite foodie mantra.    PKU or not, the most colorful fruits and vegetables have great health benefits.  Everyone needs more antioxidants, right?

Here are some links I found that may explain this more:

From my favorite grocery store at which I spend too much money:  http://www.wholefoodsmarket.com/nutrition/color-health.php

From the North Dakota State University Agriculture and University Extension (thank google for that), similar page but ignore the meal plans:  http://www.ag.ndsu.edu/pubs/yf/foods/fn595w.htm

The Center for Disease Control and Prevention offers us "What to do with that vegetable":  http://apps.nccd.cdc.gov/dnparecipe/recipesearch.aspx
Of course some recipes will require some tweaking, but its an idea if you don't have an Apples to Zucchini cookbook handy or half a dozen vegetarian cookbooks, like some people.  :)

OK I caved!

Follow me on Twitter:  http://twitter.com/pkutexas

CamBrooke Foods has hit the ball out of the park on these...  I love both the Pizza filled and the Peanut Butter & Jelly filled pockets.  The directions say to heat them in an oven, but I just let them defrost and then nuke them for 10-15 seconds.  When I first tried them I didn't wait a whole 5 minutes after taking the box from the UPS guy and destroying the box to get to the goodies inside.  The crust is great and the fillings are spot on.  Will definitely order again.  This crust seems loads better than other crusts they have used.

Have I ever mentioned I have no patience or sympathy for those styrofoam cooler boxes?  I don't mess with the tape or even removing the cooler from the box.  I tear right in, which is easy if you have a sharp strong paring knife.  :)


Mini-Pocket geode pizza treasure inside:



I'm going to go eat another one now.  Thank you for tuning in!

http://npkua.org/resources/NPKUA_Inaugural_Flyer_b_5.5.09.pdf

January 15-17, 2010

NPKUA

I'll be there. 

( What is in the box? )

I love this simple recipe. 

I use it to make cinnamon rolls, pizza dough, dinner rolls, anything I can think of.

http://michigan-pku.org/wheat_starch_pizza_dough.htm

( Click for text )

http://health.groups.yahoo.com/group/maternalpku/

Biomarin is on twitter:  https://twitter.com/pkuawareness
PKU Awareness Month appears to be May. 

Patient Power is on twitter:  https://twitter.com/patientpower
Not all PKU but they announce pku events

http://www.statutes.legis.state.tx.us/SOTWDocs/IN/htm/IN.1359.htm#1359.003

The 2009 European Society for PKU annual conference will be in Turkey.

Information on ESPKU Web Site

PKU Adult Trip Info  on i-am-pku.blogspot.com

If I'm able to pull together the funds I'd like to go.  I was thinking about setting up a paypal page and saying "anyone who donates $10+ gets a post card!"   Think that would work??  :) This trip's expenses are way out of my league, so I'll set my sights on 2010 in Denmark and hope the people who do go to Turkey can take a lot of pictures for me and bring me a fridge magnet.  :P

( Ingredients )

( Instructions )


These were featured at the PHEarless Retreat for adults with PKU in Texas, March 2009.
I can personally attest that they're pretty easy AND quite tasty, even without a bun!

I went to the last one and had a blast!  I learned how to make one of my all time favorite quick meals there:  Pad Thai Salad

Here's a link to more information about the conference!

http://www.medicalfood.com/networkpku.html

April 24th-26th, 2009

Watch the Iron Chef Video!  I'm in it for about 3 seconds!

The 2009 PHEarless Retreat was a huge success!

Wish you could have been there!  Stay tuned for a video!

Next retreat should be in March 2010.

Just a reminder that the PHEarless Retreat for adults with PKU will be March 6-8, 2009

 

( Click For More Info )

**under construction**

I will make a list of all the formula companies that I can find, with links where possible.

Applied Nutrition
-Phenylade
Vitaflo
-PKU Express
-PKU Coolers
Cambrooke Foods
-Camino Pro

Maxamum
Phenex-2
Periflex
PKU2
PKU3
LoPhlex
Phlexy-10
Lanaflex

You should try googling your own name sometime.  You never know what you'll pull up!

http://mostgene.org/pdfs/Genetic%20Drift-Summer%202005-NBS.pdf

I feel bad though - I didn't actually get that minor in German.  :(

Pad Thai Salad
2 bundles of bean thread noodles  @ 9 phe ea
1/2 a green apple, sliced thin or julienned if you have the patience  @ a few phes?  5?
1 whole carrot - shredded or julienned   @ 15-20 depending on size
juice of about 1 lime   @ "trace" of phes
1 or 2 tbs soy sauce (or less!), depending on your phe tolerance  @ 45 phes per tbs
1 tbs peanut butter of your choice @  whatever the package/book says*
2 tbs rice wine vinegar
dashes of: garlic powder, salt, pepper, red pepper flakes
whatever else you feel like throwing in - tomatoes, olives, heart of palm, pickles......

throw the noodles in a microwave safe bowl and cover them with water
nuke for 4 or 5 minutes
mix the liquid and powdered ingredients
when the noodles are done, drain them
toss everything together
eat!  The aforementioned method yields about 2 servings at 75ish phes each depending on how you make it


*if you use real peanut butter you may want to use less than 1 tbs because a) higher in phe and b) stronger flavor

This recipe was inspired by the PKU Culinary Conference in Denver CO in 2006

http://www.phenylcetonurie.org/

I have been back from this trip for almost a month now and still haven't managed to write about it. Here's the quick version:

Arrived in Keflavik, Iceland 28 September, bus to Reykjavik City Hostel where I slept on their couch in the reception area until 2pm when they finally let me check in... I spent the afternoon relaxing and took a little bus ride into town... The next day more people arrived and a few of us went out on a little excursion to the Saga Museum. Our first outing as a complete group was the day after - whale watching. We saw beautiful calm seas, mountains, and pretty skies.... but no whales! That afternoon we toured the city of Reykjavik with our native (pku!) friend Asgeir Tuesday we went out on the Golden Circle tour... I can't remember the names of all the places we went but visiting the first Geysir location and other one that spouts off every 5 minutes was AWESOME! We saw waterfalls, beautiful volcanic landscapes, fresh clear water lakes... Next day we went to the famous Blue Lagoon spa. We all shared responsibility of cooking and cleaning up for meals. I believe there were about 20 adults with PKU present.

After that was the ESPKU Conference, where adults with pku were elected into the board for the first time ever. I am so proud to have met Dinah and Maarten! Tobias was a lot of fun and had lots of great advice for me, and I actually had a small conversation with the new president as well. I had an extra day in Iceland after everyone else left, but it was so rainy and awful that I could only do a little shopping, then trudge back through the gale to the hotel for a quick shower and catch my bus to the airport. The flight to New York was great, but I don't even want to talk about the 12 hours I spent in the new york airport! Made it home safe and sound October 7.

I really can't describe how fantastic and informative this trip was...  so I'm not going to try.  You're just going to have to take my word for it!

Here is a link to a ton of photos: Iceland 2008
Here is a link to a quickie version: Iceland 2008 Abridged

http:www.pkuboard.com

http://www.i-am-pku.blogspot.com/

( recipe )

For the rest of the family I bet you could add a meat to this dish pretty easily, but you'll have to ask someone else for those instructions.  I don't cook the animals in this home.  :)

Recipe created one night when I was craving delicious garlic/basil sauce from my neighborhood Thai restaurant, but didn't feel like spending $8 on one meal.

You can successfully hide one scoop of (unflavored) Phenylade MTE in one packet of raspberry flavored Emergen-C.

http://www.emergenc.com/