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"). I often tell my mother-in-law she doesn't always have to bring the twins a snack (even if it's grapes) or give them cookies every time they visit her house (which is now the reason my son runs to her snack cabinet or fridge everytime he walks in her door). 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! 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?!
Cross posted at A Double Serving of Love
7 comments:
Great post! So nice to have ideas for meals and snacks. Sounds like Ryan eats a lot of the same things Owen eats. Owen tolerates about 8g per day.
I have PKU and i find it annoying to talk o friends about as they always make it harder. But ive learnt to deal with it an being 16 doesnt help (GCSEs) but i get on with it and i find it is easier to deal with as i got 12 exchanges a day but some have 1 or 2 and that can be a living hell.
I have PKU and i find it annoying to talk o friends about as they always make it harder. But ive learnt to deal with it an being 16 doesnt help (GCSEs) but i get on with it and i find it is easier to deal with as i got 12 exchanges a day but some have 1 or 2 and that can be a living hell.
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