Saturday, January 30, 2010

A Day in the Life of PKU

-I posted this on my private family blog, and thought I'd share it with the PKU community)
For those who have asked (maybe you'll wish you hadn't after you see how long this is)...

Let me share a little bit (is a lotta bit a word?) about daily life with PKU. I wake up every morning (usually at the bottom-crack of dawn to hear Owen screaming for me to unlock his door,, the knob was purposefully turned inside out - an entirely different story) and fix Owen his "baba" (a.k.a. "special milk", "Phenex2", or as I fondly like to call it - "my retirement money in a sippy cup"). It's a strange feeling to be extremely bitter and profoundly grateful for something all at once. This formula, which Owen will take for life, provides Owen with over half of the protein he needs to grow and develop each day, it is just modified so his body can metabolize it.
To illustrate, the minimum protein requirements for most other toddlers, is 16 grams per day. Owen can have no more than 7 grams, and the rest has to come from his amino-acid modified milk. As Owen grows, he will still not be allowed more than 7-8 grams of protein per day, even though daily requirements for most people will increase to the 50+ grams into adulthood - a pregnant or nursing mother is recommended to take 71+ grams of protein per day. A Burger King whopper has 30 grams of protein. You get the idea. Anyway, as if my own life didn't already revolve around food (I can't seem to rid myself of my incessant love for all things edible), people with PKU literally plan their day around what's on the menu.

Breakfast...
This usually consists of low-protein bread (which I will detail later) with butter and cinnamon-sugar, some fresh fruit (favorites - cantaloupe, strawberries, blueberries, grapes) or applesauce, yogurt made from coconut milk (this is a miracle product for us), cereal with rice milk, low-protein pancakes/waffles, low-protein eggs ("feggs")/omelet or breakfast burrito in a corn tortilla, French toast (made w/ "feggs"), or sometimes a granola bar or cereal bar as a "high protein" option. I weigh and measure whatever I give him, and then I record it in a daily spreadsheet that I use to calculate his intake. I also get to count any masticated leftovers and subtract that since he didn't actually consume it. My goal is to offer him about 2 grams of protein per meal, and leave about 1-2 grams of protein for daily snacks.

Snack time (served mid-morning and late afternoon)...
Owen likes goldfish, but can't have the cheddar flavor, because there's too much protein. We give him the "original" flavor (the ones that taste like soda crackers) or the honey graham flavor. We count out 25 pieces and put them in a snack bag or bowl. I usually throw in some fresh or dried fruit or carrot/celery sticks, and if he's still hungry we add some low-protein pretzels, or certain brands of fruit snacks or fruit leather not made with gelatin (we read the label on EVERYTHING).
(Quick tangent here) Did you know that if a nutrition label says "1 g protein, it means that it can have anywhere from .51g-1.5g of protein? That may seem trivial to a regular eater, but to someone only allowed 7 g of protein - that is a HUGE variance that we have to take into account. We have a low-protein food list that we consult for EXACT amounts of protein and phenylanine.

Lunch time...
Lunch is usually a low-protein slice of cheese on low-protein bread for a grilled cheese sandwich (sadly, the cheese doesn't really melt), pasta, rice, french fries, and fruit and vegetables which are always a must for each meal - the staple of his diet. Don't forget weighing, counting, measuring (and I said I'd never use my tenth grade math skills!) and recording.
Dinner time...
Dinner around our house is a wild card, because by the end of the day - based on what Owen has or has not eaten - I modify the last meal to give him enough of the protein he needs, without exceeding his maximum. My menu has to be planned in advance for us regular eaters, so I can plan in advance what we'll fix for Owen. For example, if we're having spaghetti - I make a low-protein spaghetti, and set aside some pasta sauce that doesn't have cheese or meat in it. If we're having garlic bread, I make him a slice with his low-protein bread. It's a little more difficult to substitute, let's say...a roast? If we do a roast, I try to ask Owen what he'd like and make that for him. He likes pizza (low-protein crust, low-protein cheese shreds, tomato sauce and all kinds of vegetables), so that is common around here. We also make sweet potato fries, fruit salads, baked potatoes, veggie stews/soups, and salads - and of course, BREAD (see bread section below). Don't forget weighing, counting, measuring and recording.

Dessert...
Dessert is an easy option for PKU. Owen is allowed anything that is pure fat and/or pure sugar. He can eat any candy (with the exception of chocolate and things made with gelatin). We often serve rice krispie treats, sorbet or popsicles, Rice Dream frozen dessert, low-protein cookies and cupcakes, and low-protein chocolates.
Baking...
Aside from making and/or buying low-protein items, one staple of our life is bread (who doesn't love great homemade bread?) - it is eaten at practically every meal, and sometimes in between. There's another PKU mom, Brenda (a.k.-in our house-a. Miss Amazing), who has a PKU daughter. She started a non-profit COOK FOR LOVE -because as she say, some people love to cook, and others have to cook for love. (I happen to do both). Anyway, she has developed recipes very similar to their high protein alternatives, most of which can be made with items you can buy at regular stores! This company and her bread recipe has changed our life. The bread is incredible (if you want to make a tax-deductable donation to her cause -which has become our cause- click HERE). Anway, the bread, along with all other PKU recipes is made by weighing every ingredient, and following directions exactly (unlike my regular cooking style). My dear mom and sisters decided to try out the Cook for Love bread recipe all the way across the country. It warms my heart and touches my soul that they did this. If you want to make my day - learn to make something for Owen.

Special Occasions...
Birthdays, dinner parties, holidays, school parties, nursery snacks, eating out - all require special thought and preparation. I usually call ahead to see what's on the menu so I can bring options for Owen. If I am bringing a dish to share, I try to make at least one thing that everyone, including Owen can have. I bought a deep freezer so I could make batches and batches of low-protein goodies and meals that I can pull out at the last minute.
That's It!Owen has a pretty open mind and will try anything he is allowed to try. Ironically, baby sis, who is lucky enough to be able to eat anything, spits out anything green or orange, and will hardly open her mouth for anything besides yogurt and bread.

Two and a half years later, although the stress and strain of Owen's diagnosis has lessened, PKU continues to be something I think about every. single. day. Obviously. How could you not think about it when you get to raise such a handsome little angel? I would not have my PKU life any other way.

1 comment:

Joy said...

How many exchanges or mg of phe are in the coconut yogurt? My daughter is always asking for yogurt, and I didn't know about this, it sounds great.