Eating out at restaurants and friends go hand-in-hand. Most of the time, when you get together with friends, you eat something. Do you tell your friends about PKU or do you stay quiet? Do you make a big deal about what you want to eat or do you just take what you can eat or leave the meat and beans on your plate? Here’s what some teens (and former teens) said that might help you:

"Our Taco Bell will make me a taco with only lettuce and tomato and salsa or hot sauce (& we have the phes listed for the shell in our book of course!) If we go to Kentucky Fried Chicken I eat from the food bar potatoes, veggies, fruit and salad…otherwise we go to a buffet and there’s always lots of fruits, vegetables, Jell-O and baked potatoes. We eat oriental sometimes and when we do I eat the strawberry covered bananas and the vegetable dishes." -Larry, age 12

"I normally stick with the old fries and salad routine." -Morgan, age 13

"When I go to a restaurant I normally get French fries and/or a salad" -Andrea, age 14

"If I can find veggies or a fruit plate, I order it just for a change in scenery. Salad can get old fast!" -Kristi, age 18

"I usually get rice (if it’s Mexican or Chinese), potatoes (baked, French fries, etc), a salad (anywhere), and if it’s a fancier restaurant usually pasta." Amy, age 16

"We went to a pizza place. My mom brought my pizza so that we could have them heat it up but they wouldn’t do it. They said what would happen if I got sick or got food poisoning?" -Jennifer, age 20

One person with PKU said that it is hard to tell friends about PKU because they might think differently of you.

Two different people said that instead of telling people about their PKU, they just tell friends that they don’t like meat and that they are a vegetarian or a vegan (a person who doesn’t eat meat or dairy products). "I usually don’t tell people why I don’t eat something. I told my best friend about it though. I usually tell people that I am a vegetarian or a vegan. Which is pretty much what we are." -Leann, age 21

"When I go out to eat whom ever I go with either already knows or I tell them [about PKU]…I actually like being different" -Joe, age 27

"My friends ALL know about my PKU. One way I look at it is one in 60 people in the population are carriers of PKU. So any person I talk to might be a carrier and you can’t tell who will end up having a PKU baby someday. I don’t want my friends to think that their baby will be mentally retarded if they have a baby that is diagnosed with PKU by a doctor that doesn’t know enough info about the disease, like my first pediatrician! Therefore it’s my mission to inform all of my friends that it’s not the end of the world if someone they know has a baby with PKU sometime down the road." -Kristi, age 18

"I didn’t mind having PKU. My friends would always look out for me and make sure I was eating the right foods. I thought that was cool. No one ever made fun of me for having PKU. Many of my friends felt bad for me but I kept telling them that I don’t care because I don’t know how anything tastes which was true." -a 20 year-old

"As I have gotten older and more responsible for my diet I’ve grown to be more reluctant to tell people at school about PKU for fear of being different. When people asked about my food I said I was a vegan. That was when I hit about 11-15 years old. Now that I’m 17 I don’t mind who knows, it’s not something I am self conscious of." -Kate, age 17

Lunches at school can sometimes be a touchy subject. If you’re struggling with sticking to the diet while at school, these peoples’ experiences might help you:

"Usually I bring a sack lunch that is very low, but just enough to fill me up until dinner. In middle school, I made an agreement with the cafeteria workers. I was to come in early before school and tell the head lunch lady what I would like for lunch that day. It got very confusing because there was a lot of miscommunication among the workers. They didn’t know who I was and why I was asking for food that they had not prepared. So, my mother and I decided it would be a better idea for me to keep bringing a sack lunch. Besides, then I would have more than ten minutes to eat. It got much easier the older I got. In high school, there wasn’t even a second look. Bringing your own lunch is pretty common. I used to worry when I was younger that I would be the only one with a sack lunch at high school, but it’s actually much more easier." -Brittany, age 16

"I sometimes brought my lunch to school. I never measured my food out. I would eat fruit and pizza bagels that my mom made…I would even have some chips. But I never took my milk to school. I would only drink it in the morning and at dinner. I also took bread and noodles (mine of course) with tomato sauce on it. I also sometimes bought lunch depending on what they had that day." -a 20 year-old

"I had so much trouble keeping track of my diet, that my mom started home schooling me and my two sisters." -Morgan, age 13

"In Austria we only have school from 8am to 2pm, and sometimes we have lessons in the afternoon, from 4 pm to 6pm. So we always have a break for about two hours and in these two hours I always go home and eat there. I only eat a slice of bread or an apple or something like that in school, in our 15 minute break. I eat breakfast and lunch at home." -Timi, age 15

"I would pack my own lunch with both low-pro foods and some of the other higher foods as well. I usually would bring an apple or some other type of fruit, a sandwich or crackers of some kind and then something else like a rice crispy square…I would also take a fruit cup, or free jello or pudding that my mom would make for me…I feel t hat it is much easier dealing with the diet once you get older. This is because, when you are older you kind of know what you can and can’t eat. When you are little you just don’t understand. Also when you are older you know more about the diet and you know about how much you can eat and that makes it easier." -Amy, age 17

I just wanted to throw out my suggestions regarding low phe foods, eating healthy and sticking to the diet when you are incredibly busy. First, I guess it is best to define "healthy" foods. I personally consider most foods that aren't fried and don't have an excessive amount of oil/fat to be fairly healthy. However, of course, even high carbohydrate foods that are inherently healthy can be very fattening if they are eaten in a quantity that is inconsistent with your level of physical activity.

Do you have trouble packing when you are planning on taking a long trip? What do you do about formula? Do you pack food? If so, what food? Here’s some advice from PKU teens and adults who have traveled and learned from experience (some get lengthy, but are important points):

"When traveling by plane, I ALWAYS pack my formula in my carry on. Formula is expensive and hard to replace. If luggage is lost or stolen, I can replace things or manage without them, EXCEPT for my formula."

"When I’m traveling short distances in the states, I usually take a cooler with ice to keep my formula cold. However, when I traveled international I put the dry powder in my cups and mixed it with water since I didn’t always know if I could find ice."

"I don’t ever take food (lo pro) with me when I travel. I might put a few crackers or cookies in my carry on with a couple of apples for snacks, but I don’t take other lo pro foods. I’ve learned to eat salads, vegetables, fruit, and other low ‘phe’ content foods."

"I always try to find out as much as I can about the place I am visiting. What is available? What foods are commonly eaten? How clean and safe is the water? Will I be able to keep my formula cold or not? The more information I have, the better I can plan the easiest way to take care of my diet." -Mary, age 26

"I don’t take much food along besides my formula. Usually I only take things that I know I can’t find in the store. Since I can have a pretty large number of exchanges, it’s easy for me to eat out at restaurants or find stuff at a store. If I’m flying, I usually put my food in a duffle bag and take it as carry on. I do not make my formula beforehand. I just measure it out and put it in bags. I bring my hand mixer and other supplies to make my formula. If I’m staying in a hotel I make sure it has a refrigerator to store my formula in." -Misty, age 17

"We have a camping car, and there we have a lot of spare room for my special food, we are also able to cook something in the car, we have a little kitchen…I mix my formula with water, because nearly everywhere you can get water." -Timi, age 15

"I make my milk up for the day, then bring the mix for the rest of the time that I’m there. When it comes to food I can always find some veggies to eat at a restaurant some place." Morgan, age 13

"Usually what I do for my formula is I take a can with me and a couple (it depends how long the trip is) of empty orange juice bottles and some kind of measuring thing. What Ido is I measure the formula into the bottle and fill it with water and shake. Since I drink Maximaid it’s kind of orange-so most people just assume I’m drinking orange juice and it doesn’t turn into a huge ordeal. As for food I usually bring a few either lopro bagels, lopro chex mix, or lopro crackers, and a bag of trail mix (but the kind w/ the mixed fruit, not the kind w/ nuts)." -Amy, age 16

"When I go on short trips for soccer, my mom and I find a hotel with a fridge and microwave. I bring one meal a day that I can eat in the room and I eat one meal a day out with the team. (The meal I bring is usually pre-cooked spaghetti or lopro pizza.) I bring my formula, which is already measured into packets (Phlexy-10 drink mix) and the capsules. I mix the drink with water in a cup and all I need is a spoon."

"When my family goes on trips to visit relatives, we bring uncooked noodles, etc because we can always cook at my aunt’s house without much hassle. I just bring a bunch of packets of drink mix and at least one bottle of pills. (I plan ahead so that I have extra formula, just in case there is a delay in the trip.

When I go on one of the many trips with church, there are two possible situations.

1. I am going on a trip to a "gathering" and we are staying in a hotel. When this is the case, I do things the same way as when I go to soccer tournaments. OR

2. I am staying at a camp where meals are provided for us by a kitchen staff and we are out in the middle of nowhere with no restaurants nearby. Before I go to camp, I contact the kitchen staff and make sure that there is a fridge that I can keep my cooler in. I bring enough food for each and every meal all week long. This can be a pain, but it beats being hungry. If there is something in the normal meal I can eat, I fill in with it. I mix the formula and take it and my pills in the nurse’s station after meals." -Kristi, age 18

"There's this product called techni-ice which keeps food cold for up to two days. If you plan a trip and keep your formula in a cooler, you can use this stuff without worrying whether or not the hotel will have any ice. It also doesn't melt like ice does."

Many of us struggle with sticking to the diet to a certain degree. Some may be off of the diet and wishing to go back on; some of us are struggling to get our levels lower; while others of us are satisfied with our levels with an occasional high one. In any case, we all struggle and being in contact with other PKU teens who are going through the same things is very helpful. I know that when I have accountability partners I can turn to for support, sympathy, encouragement, and just a listening ear of someone who understands, I am motivated to stick to my diet more closely.

Here are some encouraging words from adults who have been through the experiences we are going through right now. Some of them went off diet and are going back on as adults and some struggled to stay on diet. Each of them has some encouraging words that can help us stick to the diet. Here’s some words of wisdom they would like to share with us:

"My original reason for going back on the diet is so that I can have children, however begin back on the diet I notice some changes in myself. Not really in my every day functioning, but in how I feel about myself and my moods. When I am off the diet, I have a continued feeling of being tired, stress and frustrated. I am extremely moody and have no patience for anyone or anything. One minute I am happy and the next minute I could just cry. I would get angry over the smallest of things, and know in my mind that it is stupid to be so mad about it but not be able to control how I felt.

Being on the diet helps me to be much more level headed, and feel more in control of my moods. I am much happier and have more energy and patience to do the things I like doing. Plus, he won't admit it but I think my husband likes me more when I am on the diet. I'm much easier to deal with." -Michelle, age 28

What does every teen dread hearing when they go to the dentist? I know that for me it was, "Those wisdom teeth need to come out soon." As if the pain and being out of it because of the medication I was on wasn’t enough, the oral surgeon told me to go home and eat a lot of ice cream and milk shakes. Unfortunately, I could not eat those recommended foods. So my family and I improvised. What works best with the PKU diet when you can hardly open your mouth and chewing is completely out of the question? Here are some ideas:

• Mashed potatoes
• Applesauce
• Sherbet/fruit ice (Italian ice)
• Fruit smoothies/Jamba juice (WITHOUT a straw!)
• Over-cooked spaghetti noodles
• Over-cooked rice
• Soup (without vegetable chunks—I learned the hard way!)
• Prono/free jelled desserts
• Hunt’s lemon pudding
• Low pro mac & cheese

I've found it easy to just bring my formula in a thermos. Most people might think you're drinking coffee or milk. I know if I'm going to be away from home for several hours, then I'll bring my thermos with me

Do you often times feel like you’re the only person in the world with PKU? Maybe you want a place to ask questions and get answers from other people who actually have PKU and have found out the answers for themselves. There is now a special list of just those people! You can join the newly created online discussion group for teens and adults with PKU. Other than a few professionals, all of the members have PKU. If you want to subscribe to this group, just email Sarah Foster (PKU, age 30) at pkuadult@aol.com and request to be sent an invitation to the group. It is a great group and everyone you come in contact with on this list actually deals with PKU in their lives on a daily basis. Cool!

I was born in 1982 in Tucson, Arizona where I was screened and diagnosed with PKU when I was about 2 weeks old. My parents were told the same thing many parents were probably told, "Your daughter has a metabolic disorder called PKU. PKU causes mental retardation, but there's a diet that we will put her on. It'll help her lead an ‘almost normal’ life--she will probably have a slightly lower-than-normal IQ, and will struggle much in school."

My parents did some research right away, and realized that my pediatrician's information was out-of-date. They read that people were going on diet FOR LIFE, and leading fully normal lives. We eventually found a great pediatrician in town that knew what he was talking about, and have had wonderful luck with doctors ever since.

When I was little, my parents made sure that I was on diet and kept good levels, but they also made sure that the diet did not run my life. I knew what I could and couldn't eat, but I don't remember having to measure out each thing I ate. To my knowledge, nobody in my family kept a running total every day of how much phe I was eating. I don't know if my parents should have done so or not, but I've made it just fine this far in life by that approach.

One of my memories (actually, it's probably more that I remember being told the story) is that when I was about 3 yrs old and in daycare, I had a fit when the worker was giving out snack. Apparently she didn't know about my PKU and tried to feed me the peanut-butter crackers that she was giving everyone else. I told her that I couldn't eat the snack. She insisted that I eat the snack, but I refused. (I guess stubbornness can be a good thing sometimes, right?!) I made a big deal--tears, yelling, everything. I don't know if she eventually gave in, or if my mom or another worker that was familiar with my PKU came by and clued her in, but I just know that my parents were proud of me for knowing what I could and couldn't eat. If I ever didn't know what I was allowed, I would tell people that I wouldn't eat it because I didn't know if it was OK or not. Then I'd go home and ask my parents. If they said it was OK, I'd eat it the next day if I was offered again.

When I was in elementary school, I remember hating that I had PKU at times. I thought that I was the only person in the world with it, and I always asked the well-known PKU question... "why me?" I was the only person in my class/school that brought her cold lunch every single day. A few times, I tried to go through the lunch line and just buy the applesauce, carrots, etc., but the lunch ladies always got on my case because I had to have a main dish and a certain number of sides, and a milk. I was painstakingly shy, so I decided that I'd just go on with the cold lunches rather than make a big deal about how they needed to conform to my special needs.

I vividly remember the times when my level was high. The littlest things would upset me, and I'd have a big temper tantrum. The ones where you feel like the world is after you, and you are full of anger and there's no way of getting rid of it. It was not abnormal for throwing, screaming, and flailing around to accompany these fits. I'm normally not like this, and my parents could always tell when my levels were high, despite what the doctors told them…the only way to tell if my level was high was through blood results. My parents and I have always been able to tell when my levels are high. Now, I think doctors believe that more than they did 10 years ago.

Now that I'm older, things have gone much better. I've always been open with my friends about the diet and they've always been good about it. They never tried to get me to eat things I can't eat. They understand (pretty much) what will happen if I eat something I'm not supposed to. They like it when other people ask about it because they can help me--and explain that if I hadn't been put on the diet when I was young, I would be mentally retarded. Then, of course, the peanut gallery chimes in, "we think that explains something." lol! I usually give them the evil eye, and continue on with the explanation.

Sometimes the explanations can get old and I start to feel like a broken record, and I'm always thankful when my friends do chime in and explain that I'm "allergic to protein." My friends usually do a pretty good job explaining it. Very rarely do they completely distort the story.

This summer, I was a counselor at the camp through my church for elementary students. I was a little worried about what the kids might say about me eating things that they couldn’t eat. It did not help that I had to be the meannie who made them eat the "disgusting" chili that the kitchen served when I had spaghetti on my plate. But I felt a special closeness to one of the children there who was on a special diet and could not eat a large percentage of the food that was available. He had also brought a cooler full of food that he could eat, but some of the kitchen staff didn’t cooperate with getting him his special food. They had no problem with me going into the kitchen because I was an "adult" so I just grabbed his milk or cheese while I was getting my meal. I took my "medicine" (formula) in the nurse’s station after meals so the kids didn’t know about that unless they were in there at the same time. In this case, they usually didn’t want me asking about their pills, so they didn’t ask about mine.

As for the high levels now, they are few and far between. About 2 years ago, I decided to take responsibility and do things on my own. I started drinking my formula regularly (I had conveniently "forgotten" to drink it a lot until that point in time. Since that day, I have not missed a dose of formula unless I was sick.) I keep track of my own exchanges (milligrams of phe) on the computer every day, and my levels are usually in the 2-6 range like they're supposed to be. I can still tell when my levels are high, but I don't really have the temper tantrums that I used to. Now, I just get very emotional, can't concentrate, can't sleep well, etc.

One thing I like about having PKU is proving the old myths wrong! "PKU patients are generally poor at math and struggle in science." Well, in high school, I took accelerated and AP math and science courses. My senior year, I aced calculus and college-level biology. "Even on the diet, Kristi will have a slightly lower-than-normal IQ." I graduated in the top 2% of my class! I don’t think that any more explanation is needed. PKU children have the same exact potential as "normal" children do, as long as they are devoted to the diet. I'm definitely not mentally retarded and I am active in my school, soccer team, and church.

Another thing I like about PKU is the number of friends I’ve made. I have several online friends that I have become accountability partners with. We encourage each other, take levels on the same days to compare results, and nag each other when need be. My dietician introduced me to a younger teen here in town that I have become accountability partners with, also. By having someone in town that I frequently talk to, I feel that I need to motivate myself to keep my levels up (or down) so that I am not the "do as I say, not as I do" person. I also met a lot of new people at a Maternal PKU camp I attended in California in 1999. It was a great experience and I had such a comforting feeling knowing that everyone sitting at the table with me had PKU and was counting their exchanges, also! There is certainly a closeness between all of us, I think.

Right now, I’m in my second semester at the University of Arizona. I am pursuing my interest in biology (yes, a PKU patient studying science!). I am majoring in Molecular and Cellular Biology and am especially interested in genetics and metabolic disorders (imagine that!). I plan to continue on to medical school and become a "PKU doctor," as I often times refer to my metabolic doctor.

As far as living with the diet in college goes, I am living at home so I don’t have the dorm life to struggle with. I usually have breakfast and dinner at home and eat lunch down on campus. For the first time in my life, I am able to eat a lunch other than the sack one in my backpack. The student union on campus has a great salad bar which I raid everyday. I usually just have a salad and a bag of chips.