A good friend of mine, Beth over at Misadventures, Rants and Tidbits , recently posed this question to me:
"Out of curiosity, given the traditional high-pro foods normally served on T-day, what do you guys do or plan to do for your family meal now? That would be a stupendous, informative post!"
Well, ask a question and you shall receive an answer!
When we learned of Ryan's PKU diagnosis, we were righteously overwhelmed to say the least. I mean, food after all is what most of our daily lives are centered around; breakfast, lunch, dinner, snacks, parties, outings, vacations, family get togethers and I could go on and on. Wait, did I mention Holidays!?
I have never wanted to raise my children to focus on food. I never want to use food as a reward (ie: "If you let mommy shop, I'll give you a cookie"). Now, it's hard not to put a focus on something that is such a significant part of our lives. Every morning, every event, every outing we have to think about what Ry is going to eat for the day. If we go out, will there be something he can have? If we go to a party, will there be food for him to eat? What is he going to eat if we go to a carnival or a circus? These are the thoughts that cross my mind every day, throughout most of the day.
So here's is what a typical menu is like for Ryan. These are just the basics.
Breakfast: Most cereals, Low Protein (LP) waffles or homemade pancakes, LP breakfast bars, LP toast or a regular slice of toast, fruit
Lunch and Dinner: So Delicious Coconut Milk Yogurt, Grilled Cheese (LP cheese), Pasta (LP or regular depending in his protein intake for the day), LP Homemade Pizza, Homemade Veggie Nuggets or Burgers (veggie burgers from the supermarket are too high in protein), French Fries, most veggies and fruit, Walden Farms Peanut Butter, Veggie Stews & Soups.
Snacks: LP cookies, fruit, Gerber puffs, Glutino Pretzels, some chips, fruit snacks, ice pops, Coconut Milk Ice Cream, Hunts Lemon Pudding (only one dairy free), Veggie Chips, Crackers
We offer him a lot of products from Cambrooke Foods but at this age it is hit or miss. I make A LOT of homemade food. I like to experiment and try new things for him. Cook for Love is a great new resource for the PKU community. The recipes are OUTSTANDING! However, I can spend hours making something and all the boy will want to eat is tomatos and cucumbers. I know, we should all be so lucky that all our children want to eat is tomatoes and cucumbers! Nana is always concerned about having food for Ryan. She always makes sure she has a sweet potato or whatever you favorite food of the moment is. If you ever see me in the supermarket, I'm the crazy lady in the aisle getting excited over a product that has a LP nutritional value!
Keep in mind, just because it's low protein doesn't mean Ry can eat an unlimited amount. Currently, he is tolerating about 12-13 grams of protein a day(which was recently increased). 8 grams of that comes from an 8oz glass of milk he drinks once a day. Leaving only 5 grams for 3 meals and snacks. To put that into perspective, a small frozen pizza you and I eat can range from 20 grams of protein or more. There could be 2 grams of protein in 10 potato chips, 2 Oreo cookies have 1 gram of protein. I try to mimic a lot of food. For instance, when he goes to daycare and its pasta day, I send pasta, when its waffles, I send LP waffles, etc. It's nice to hear from his teachers "Wow, we can't wait to see what you come up with next!". For family dinners it is basically the same idea. We eat regular pizza, Ry eats LP pizza, we eat meatballs, Ry eats homemade veggie meatballs. It's not always that easy, but I do get creative!
You have heard me say Ryan has mild hyperphe/mild PKU. He can tolerate more protein than a person with Classic PKU. Every case is different. Some may only tolerate 5 grams of protein a day while others who have hyperphe are not on a restricted diet at all. The majority of PKU'ers have to weigh and measure everything they eat to calculate their intake. We don't have to do that with Ryan's food. In one sense it makes it just a tad bit easier.
So, there you have it. Any more questions B?!
Yummy LP brownies!
Cross posted at PKU Families
3 comments:
Hahaha--don't tempt me to start asking questions--you know I don't stop until heads start exploding like that guy in Scanners.
Very informative, thanks! I LOVE that you go the extra mile to mimic his meals so he doesn't feel left out or different at an age when he still won't really understand why. And even being an auntie I can relate to the frustration of spending time and effort to make something special, only to have the young picky eaters completely ignore it.
You're really on top of it with the PKU community and I'm really proud that you've come so far in the past few years--I remember how much you worried about not knowing how to break from what you all knew and were used to food-wise. I knew you'd do fine, and now here you are spear-heading health care changes and bringing resources and info about PKU to the uninformed masses! Lead on, momma!
MWA!! Hugs to the twinkies and to Matt, as always. XOs -B
Also, I forgot to add:
My grocery store started carrying that So Delicious coconut milk yogurt about this time last year . . . and being "recently" lactose intolerant and missing cheese and yogurt all the time, I can't tell you how much I love that So Delicious stuff!!! It has inspired me to see what I can revamp from milk- and cheese-based recipes that just don't work with soy or rice products--they don't hold up to the cooking process, but I have a thought that the coconut creme may be doable when combined with some other thickening agents. I'll keep you posted . . . but you know how quickly I get around to actually doing stuff. :P
Thanks for posting this Dawn! Ry is lucky to have you as a mom :)
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