Diet Guide

I know it’s been awhile since my last post! I am going to start trying much harder to update more often. I have a lot to talk about, but I will break it up over the next few posts for everyone’s sake! The number one thing right now that I want to talk about is that Hannah’s Diet Guide has changed since she turned one. So what's a Diet Guide? A Diet Guide is a guideline her dietician at Emory sends to us every so often. It tells how much phenylalanine, tyrosine (the amino acid phenylalanine is broken down into), protein, and calories she should be consuming both through her formula and through food.

For months she was on a mixture of Similac Advance (an infant formula for all babies--you can buy this at Walmart), which has normal protein and phenylalanine, Periflex Infant PKU (a formula that has to be specially ordered through Emory), which has no phenylalanine, and Periflex Junior (special formula), which also has no phenylalanine. Everyday she was consuming 20g of Similac Advance, 55g of Periflex Infant, and 50g of Periflex Junior mixed with about 20 ounces of water. She also had to have 250mg of phe from foods (remember all foods except pure sugar and pure fat contain protein and phe). Now that she is a one year old, we are instructed to give her 80 grams of Periflex Junior mixed with 15-18 ounces of water (much easier to mix every night since it's just one kind of formula now!). Periflex Junior is a junior formula that she will be on for the next few years. I guess you can think of it as “whole milk”. By this I mean babies without PKU are on breastmilk or infant formula until around age one, and then after that they are switched to whole milk. The junior formula is like her being switched to whole milk. It still has plenty of nutrients, but it has fewer calories/fat than the infant formula since she is getting more calories from food now. Once she is older she will be on an adult formula, which you can relate to as “skim milk” since it has even less calories/fat. Anyways, the 80 grams of Periflex Junior contains no phenylalanine (just as the infant Periflex did not), 1840mg of tyrosine, 20g of protein, and 299 calories. Now that she is not on Similac Advance anymore (the amount she was on before her first birthday contained about 100mg of phe), she has to make up for that 100mg phe in her diet (food). So now each day our goal is to get her to consume 350mg phe from foods. She needs 9g of protein from her food as well (in combination with the formula, that is 29g of protein a day), but we are told to just worry about counting mg of phe, not protein, but if she is consuming the 350mg a day of phe that she needs, she is getting that 9g of protein. The Diet Guide also tells us how many calories to give her in food, but as this is just a suggestion, I don’t even worry about it. I know she is eating enough calories to help her body grow and I don’t find it necessary to count calories for a baby. I hope that makes sense! Basically, she needs to drink all 80g of formula a day and consume 350mg phe from foods a day.

Ok, so on to how the actual switch in her Diet Guide has affected us! Everything I just explained is the easy part! It all looks so straight forward on paper, but in reality it is quite hard to tell a one year old exactly how much/what she has to eat a day! For a while (maybe a month or so) she was drinking all of her formula plus an extra 1-4 ounces, which is awesome! Now? It is an all day to struggle to get her to drink two thirds of the formula. She is getting to the point where she only wants a cup and has almost weaned herself from a bottle. Most moms would be thrilled since that is a very difficult thing for a lot of babies to do, but I’m probably one of the only moms ever that is bummed about it because the bottle is an easy way of making sure she gets all of her essential nutrients through her formula. She will only take about 3 ounces of formula at a time with sippy cups (compared to the 9 ounces with a bottle). Hence the reason why I am still pushing the bottle on her! I want her to be a big girl and drink from a cup—but only if she is getting her formula. As soon as she will take a great cup of “milk” (formula), I will throw the bottles away and be glad about it! Luckily today we received a few free samples of flavored formula (orange and chocolate), so I am going to try her on one of those tomorrow and see if it is any easier for her to drink the formula.

And on to food…oh here is where the battle truly begins!! Getting to her goal of 250mg was difficult, and now we are trying to get to 350mg! This is the reason why it is so hard: Hannah mostly only eats fruits and veggies and sometimes crackers. Ok, so I’m the only mom on Earth that is not completely happy with a child that only wants fruits and veggies! The reason why only eating fruits and veggies makes it hard is that most fruits and veggies are very low in protein/phe. Even if she ate fruits and veggies all day long, she wouldn’t meet her goal, since she is so little and it takes a huge quantity of these foods to add up to 350 (it will be easier one day when her tummy is bigger and can handle more food). The way she meets her goal is mainly through starches like pasta, rice, bread, or some dairy, such as yogurt. She does like pasta, rice, and yogurt, but not at breakfast, lunch, and dinner everyday, and she refuses to eat bread (any bread, tortillas, even pancakes!). So this makes it difficult on some days to meet her goal. Luckily, it is getting easier. For the past month I have wanted to write about this, and over that month each day is easier and easier as she does want to try some new foods, but most days she usually doesn’t quite meet her goal. It also is hard because she doesn’t like to eat much at once (like her Daddy), and would rather graze all day. This can make it a little harder to get to her goal since a lot of the time I can’t get enough food in her to add up to 350mg. But, I know things will get better as each week comes. In a few years (when she is eating more) I will probably be posting about how her goal is too small and it is hard to stay under it! I'm still not quite sure what happens to her if she doesn't meet her goal-I assume it's the same as any child not getting all their nutrients. I will try to find out what happens in the long run if her goals are not met.

I think one of the reasons why it is getting a little easier for her to meet her goal in the past couple of weeks though is because I am learning to let go a little. If you have ever been around me while Hannah is eating, you know what a wreck I am! I am constantly watching to see if she drops food and searching for missing peas and carrots (so I can weigh anything she doesn’t eat). But now I am starting to trust her more and give her more food, and by allowing her a little more freedom I am finding that she eats more, and thus gets to her goal easier. A couple of nights ago I even let her eat yogurt with a spoon (in reality she just picked up the yogurt with her hands while holding the spoon, but you get the idea!), and she finished the whole bowl. I know she wouldn’t have come close to that if I had been feeding her, but by giving her some freedom, she found it exciting to eat yogurt and she didn’t make too much of a mess! (It’s not the mess I am concerned about really—it’s wanting to have every gram of every food she eats to be accounted for—it’s really hard to measure yogurt that is smeared on her shirt!).

Please understand that I am not complaining (I hope that it does not come off that way), but I am just trying to tell of the everyday struggles and triumphs we are having as new parents with a baby with PKU. I worry about her all the time about a lot of things, but mostly her diet is what is on my mind since it can be so complicated!

More to come!