Saturday, July 23, 2011

Saturday, January 30, 2010

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.

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 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.

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.

Sunday, January 3, 2010

Food for Thought

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


Cross posted at A Double Serving of Love

Ever since Ryan has been eating table food, we have tried to introduce "PKU language". We use words like "Low- protein" and "Phe". We don't like to use the words "can't eat" instead we say "doesn't eat".
Today Ryan and I had a little conversation during lunch.

Mommy: "Does Ryan eat chicken?"

Ryan: "Nooooo."

Mommy: "Does Ryan eat meat?"

Ryan: "Nooooo."

Mommy: "Ryan eats low protein foods."

Ryan: "Low protein!"

Mommy: "Ryan eats low protein because Ryan has PKU. Can you say PKU?"

Ryan: "No mommy, P Q..."

My son teaching me the alpahabet!

Saturday, December 12, 2009

Nursing a Child With PKU

I thought I would quickly share my thoughts on this topic since I hear all sorts of different ideas on the subject.

First of all, This ---->
is Audrey! "Hi, Audrey!" She is now 3 months old and is successfully nursing and taking her medical formula (Phenex-1). She is staying right in the middle of the range and growing and developing right on schedule.

I made the decision to nurse her, and it is very important to me. I was lucky that her tolerance allows me to do this (she is not hyper phe) and my clinic is supportive. I nursed my son Owen for 10 1/2 months till his clinic asked me to stop. I did it hoping we would figure out why he wasn't growing on a standard curve... I regret that decision but made the best one I could with the information I had at that time. His growth had nothing to do with nursing.

My clinic has told me that most Moms don't nurse as long as I did with their PKUers. I was a bit surprised by this statement and think some clinics do not want the added hassle of a breastfeeding variable. Unlike other foods, breast milk can't be measured and accounted for as easily. Every week is a little game... how much did Audrey nurse? And was her medical formula enough for that day? As the numbers fluctuate up and down (nothing drastic, though) our clinic has to adjust and readjust her therapy plan. Luckily we have found our groove.

I nurse as an investment in my daughter. There are some times I wish I could have nursed Owen longer... we had a hard time breaking that habbit and just a few short months later he became really sick. I wonder if nursing through his illness would have helped shorten his 3+ month ordeal. I stick with it with the help of my trusty Medela pump, to keep me producing, and good milk storage containers. I use glass and Medela BPA free plastics.

My best advice for new parents would be to have a discussion with your clinic right away. I started off the first visit by stating (not asking!) that I would be trying to nurse Audrey longer. We were up front about our wishes and hopefully things will work out for us. I know it will be more difficult to juggle once she is eating solids, but I know it can be done. Please work with your clinic if you want to nurse and don't be afraid to advocate for yourself and your new baby.

Monday, September 28, 2009

Welcome to the community!

I just wanted to post an update for our family. We welcomed into the world our daughter, Audrey, on August 31st. Audrey now joins her older brother Owen in the PKU community.

We received the diagnosis 2 weeks ago and are happy to report she has taken off on her medical formula and is still gaining weight steadily! I am working hard to keep nursing her...not an easy job with 2 kids, formula, logging of feedings and a pump. But, I am determined (i.e. stubborn?) to do it all.

So, please welcome a new girl to the block... our little Audrey girl.