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 1 
 on: April 20, 2011, 11:34:03 PM 
Started by Go-IPad Admin - Last post by st97
Another good PKU friendly restaurant that we just found... The Old Spaghetti Factory. There is one located in Trolley Square and one located just off of I-215 and Redwood Road. They have a side of spaghetti squash and marinara sauce, or gluten free noodles (I am not sure of the PHE in these, so we went with the squash). But a kids meal is served with applesauce or a salad, and you can get a dairy free popsicle instead of icecream.

 2 
 on: March 24, 2011, 06:54:48 PM 
Started by st97 - Last post by st97
I found a different brand of tapioca flour (Bob's Red Mill) that said "also known as tapioca starch" on the front label. So I bought it, and hopefully this is what I need. I found that brand at the Sunflower market in Murray, and as I mentioned Macey's had a different brand of tapioca flour.

 3 
 on: March 19, 2011, 05:11:01 PM 
Started by st97 - Last post by st97
All,

I am very interested in making the Cook for Love sandwich bread, but can't find tapioca starch anywhere! I have looked at Wal-mart, Winco, harmon's, smith's and Macey's (Macey's was the closest with tapioca flour, but no starch). Any suggestions?

Thanks!

 4 
 on: February 01, 2011, 12:36:34 PM 
Started by st97 - Last post by st97
All,

Has anyone tried the gluten free mixes now available from Betty Crocker/Pillsbury/etc? I have a gluten free brownie mix that is 1 g of protein per serving, but then it calls for two eggs. That won't really work for my kids, so I am thinking of trying some substitutes. Has anyone tried this with good results?

Thanks.

 5 
 on: February 01, 2011, 12:33:01 PM 
Started by st97 - Last post by st97
Hi All,

My 2 children both have PKU. Up until this point it hasn't mattered, but now that my youngest is starting to eat solids, I'm not sure what the best way is to portion out their food. For most recipes I have it calculated for mg PHE per g of food and that works just fine. But if I am cooking pasta, for example, I measure it dry. When it is cooked I am re-weighing the whole amount and then dividing it up. Surely there is an easier way to do this, right? When they are older and eating about the same amount I can just divide it in half, but for now does anyone have any suggestions?

Thanks!

 6 
 on: September 18, 2010, 12:19:00 PM 
Started by snielsen - Last post by snielsen
Although it took me a while to accomplish my own challenge, I have results.  Here is some background first: If I eat 400 mg phe/day, I get about a 4.0 level.  If I eat 650 mg phe/day, I get about a 6.5 level. My normal day consists of riding my bike to and from work (10 min each way), where I sit at a desk or stand in front of a classroom, and that is about the extent of my activity.

What I did: I ate 560 mg phe per day for 3 days.  This would have put my levels at about a 5.6.  On a Saturday, I had 560 mg plus 4 chicken quesadillas from the Outback Steakhouse (at least 800 mg more).  My husband and I rode our bikes to and from the restaurant totaling about 60 minutes of riding.  On Sunday and Monday, I resumed the 560 mg/ day diet.  My level was a 6.8!  

When it comes to spending money on either pills or a workout program, I would prefer the workout.   In speaking with a couple of other adults with PKU, I have heard of similar experiences.  If you have PKU and you want to increase tolerance, try starting a workout program and please post your results.

Because of these findings, I am trying to get adult group activities that involve “activity.”  The first idea I have is a dance.  The dance would include low phe refreshments.  We would have games and dance instructions for all.  I was thinking of inviting everyone but more focusing on adults who have PKU.  Maybe after this activity takes place, every PKU adult could take a blood sample and see what happens.  If you have any more ideas, please post them at http://www.go-ipad.org/ and we can get the party started.      

 7 
 on: September 09, 2010, 12:00:24 AM 
Started by st97 - Last post by A95
I also have the same two pouches of CaminoPro as well as two pouches of Cambrooke's Better Milk (15 g protein per pouch).  Send me a personal message if you'd like them.

 8 
 on: September 07, 2010, 03:42:36 PM 
Started by rands - Last post by rands
I also take my formula and/or eat my own meal before I go to any family events. I like to avoid the feeling of being desperately hungry with no options.
I go to family and other functions with it in my mind that I will enjoy the people and the activities even if I cannot embrace the food. People are more important.
If food is central at a certain event I offer to bring the item that I will enjoy the most so that I have something to eat that I love.
We eat to live. Not the other way around.

 9 
 on: September 07, 2010, 03:23:03 PM 
Started by snielsen - Last post by rands
This sounds cool. I am wondering what the difference in blood levels is on the actual day of exercise vs. a non-exercise day.  Just think if you had taken your levels within a couple of hours of completing that 15 mile ride? Would it have been even lower?

 10 
 on: August 24, 2010, 04:54:46 PM 
Started by rands - Last post by st97
When my second child was born and people were bringing in meals, almost everyone brought at least one thing they knew my son could eat (squash, rice krispies, other fruits and veggies). I was so touched that they all remembered him, and went out of their way to do something for him. I don't expect more distant relatives to understand the diet, but I really appreciate that my siblings (my son's aunts and uncles) and my parents (his grandparents) -and my in-laws- always have something that he can eat for a meal, when they offer to feed our family, because he is a part of our family. Of course I don't mind supplementing the meal with items I have to buy on-line. I hope that when he is an adult and eats with his wife and their family, that they will want to provide at least side dishes that he can enjoy with the rest of the family (fruits and veggies aren't too hard, and we should all be eating more of them). Eating together is a very important activity, and I hope he can work it out so that he doesn't miss out on eating dinner with his own family.

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