By Virginia Schuett, Editor, National PKU News
This story was inspired by the question of a Canadian parent. Several months ago, she posted a message to the PKU Listserv group, intended for all adults on the diet. She wanted to know about various aspects of what her young daughter could expect growing up with PKU. She also wanted to know what advice young people had for her, to optimize her daughter‘s acceptance of the diet and to maximize the quality of her life. Because I believe that parents of young children everywhere must share her concerns, I invited seven young adults to answer a series of questions about living with PKU, past and present. Each is a remarkable person, successful and mature, with important things to say about living with PKU. Here are excerpts of their views and experiences. Part I of this story will focus on their early years with PKU. Part II, to be featured in a later newsletter, will focus on how these seven adults live with PKU in the present and their advice for parents.
|Sarah Foster, age 29, Boston, MA
Off diet at age 10 or 11,* returned to diet April 1997. One sister, age 34, one brother, age 32; neither has PKU. Employed as the Focus Group Coordinator at First Market Research in Boston, managing day-to-day activities of the qualitative research department. B. A. in Political Science, M.A. in Policy Sciences.
Jon Postajian, age 32, Glendale, CA
|Tracy Beck, age 26, Stony Brook, NY
Never off diet. One sister, age 29, not PKU, two brothers, ages 20 and 21, both PKU. B.S., M.S. and fifth year graduate student studying astronomy for a Ph.D.
|John McKenzie, age 31, Glasgow, Scotland
Off diet at age 12,* returned to diet May 1992. One sister, age 27, not PKU. B.S. in genetics. Manager in a catering outlet.
|Sarah Pedersen, age 20, Neenah, WI
Never off diet. No siblings. Junior at University of Wisconsin majoring in German Studies, minor in International Business.
|Craig B, age 33, Miami, FL
Off diet at age 18,* returned to diet 1997. One brother, age 32, not PKU. Degree in computer programming. Employed as an IT Business Analyst and Project Manager for a large public marine and aviation fuel service corporation, responsible for 25 of 40 offices worldwide.
|Stephanie Stremer, age 18, Madison, WI
Never off diet. One brother, age 15, and one sister, age 9, both have PKU. Freshman at University of Wisconsin, Madison (has not chosen a major).
Unanimously, our group did not remember the diet influencing their activities growing up, individually or as a family. John says, "My mum went out of her way to cut down the influence that my diet had on my activities. I went to cub camp regularly and to birthday parties. It was just a case of taking my own food with me." Tracy had a similar experience: "When I was very young I don’t think my diet ever really bothered me or hindered my performance in the activities I was involved in. My mother enrolled me in extracurricular activities and I think they made me feel more ‘normal.’ I took tap/ballet, bowling, gymnastics and swimming lessons as well as craft classes. During hour-long classes like these PKU was not really a factor. I don’t even know if any of the instructors realized I was different from the other kids."
Sarah P. agreed: "I went to sleep-away camps starting in fourth grade, and always participated in every school activity that everyone else did. If an activity required food or eating, I would bring low protein food when it was needed. My parents were always supportive of me, and my mom was (and still is) always available to cook low protein food for me." Stephanie relates, "We probably didn’t go to all the potluck school functions at first. Then mom just started to focus on a plate of food for the three of us and a dish to pass. It never slowed us down from traveling or visiting or going out to dinner. We always just carried a cooler filled with low protein food."
Most of our group had mothers who were dedicated to providing variety through homemade low protein foods. They would eat the part of the family meal that they could, and supplement with other foods. Mostly, they did not feel "deprived" even though they did not always find all home prepared low protein to be delicious (years ago, the food options were much more limited). Sarah F. says, "I definitely wanted what they had to eat as I got older but I knew my parents would always go out of their way to get anything they could for me so I never really had the feeling I was deprived." Jon says, "I don’t feel that I was deprived. I always ate a lot of veggies, but once in a while I did feel left out not being able to eat the great foods my mother and father prepared. The special foods I had taught me something most people lack, though: WILL POWER. Today I have no problem sticking to my diet because of that will power."
Tracy says, "My mom always tried to make sure there was something for us to eat, usually a small amount of the lower protein portion of what my parent’s and sister were eating. On some nights we would get a cooked vegetable, like broccoli, cauliflower or green beans, but for the most part we just ate vegetables and fruits to fill us up. At times I remember feeling deprived, though, especially when I got older." Sarah P. relates, "My mother made me a lot of low protein food when I was younger, and she still does, even though I help a lot more now. Generally, at mealtime, I would just eat what I could of the family meal. As mom or dad was cooking the meal, they would ask me, ‘Do you want to eat what you can of what we eat, or do you want something different?’ As I got older, I would eat more of whatever I wanted, even if it was different than my parents, like spaghetti or low protein tacos. I never felt deprived when everyone else was eating something different —it was just that: different. It wasn’t any better or any worse than what I had."
Craig adds, "I was quite lucky when it came to mealtime. My mother is a fantastic cook. She comes from a family where cooking is an art, not a chore. She always had some special food for me. This was in a time when the only special low protein food worth purchasing was the pasta. So my mom’s tremendous cooking skills kept my palette happy. Sure, I was eating differently than everyone else and I wanted to try the things I couldn’t eat, but that urge is not as great as you would think. I mean, I had been on the diet since I was 14 days old; this was just normal."
Stephanie says, "Sometimes we seemed to get in a rut of eating the same old thing. But there was always a choice. Just maybe not always the one I wanted. My mom was always cooking and baking for us, though, and is a great cook. I was always willing to try anything new—at least once. I didn’t really feel deprived that I can remember, maybe because my siblings also have PKU."
The family constellations of our group are diverse, from all children in the family having PKU to an only child with PKU. Their experiences are equally diverse. Sarah F. says, "The main thing I remember about my siblings and PKU is that they ‘tortured’ me by threatening to tell my parents if they caught me eating something I shouldn’t. I think they were jealous of the attention I was given because of PKU. The funny thing is that I didn’t want the attention. I really wish I had a brother or sister who had PKU. I think I wouldn’t have felt like I was the only one in the world with PKU."
Tracy says, "My non-PKU sister, Lisa, has always been supportive of my diet. When we were young she used to inform my parents if I was eating anything that I shouldn’t. I have always felt that she looked out for me and treated me like a big sister should, regardless of my PKU. I think the fact that my two younger brothers have PKU has really defined my outlook toward the disorder and life in general. In our family, half were eating low protein foods and the diet really was 'no big deal' (to us, anyway!). However, I have absolutely no doubt that if my brothers didn’t have PKU my attitude would be much different. I have always been very shy around people I don’t know very well. If my brothers didn’t have PKU, I’m sure I would probably have felt very isolated and alone, hence even more shy." Stephanie agrees: "The fact that all three of us in my family have PKU has most likely made PKU seem more natural, easier, just normal."
John says, "My sister is three years younger that me, and she took great delight in pointing out any of my transgressions, but she also was very defensive of me as well." Craig says, "I have one younger (non-PKU) brother. He, like my parents, never made it seem like PKU was a big deal. I sat across the breakfast table from my brother for many years, pouring orange juice on my breakfast cereal and guzzling down my "drink." He was never phased. It was normal. By never making it harder, he made it easier."
Sarah P. says, "I have no siblings; it’s just my mom and dad and me. I found out a few years ago that they made the choice not to have any more children. They didn’t feel it was right to knowingly bring another child into the world who might have a genetic disorder, without the child having any say in the matter. I’m not sure I agree with their decision, but that’s how I grew up. Most of the time, I’m glad I have no siblings, but there are times when I wish that I did."
Some of our group experienced anger and sadness at times because of PKU, others did not; all have come to terms with these feelings in their adult lives. Sarah F. says, "I don’t remember being sad or angry when I was very little, but that changed in adolescence; then I was angry that I had to drink the formula and couldn’t eat the foods everyone else did. More than anything, I was angry because it felt like no one really understood and I felt lonely."
Tracy reminisces, "When I was caught sneaking foods I wasn’t supposed to eat I remember feeling very sad that my life had to be so different from that of ‘normal’ people’s. I don’t believe I ever really felt angry toward having to be on the diet, though. I think the way people deal with such things varies dramatically. Rather than become angry and vocal about my unhappiness when dealing with PKU, I had more of a tendency to become depressed and isolate myself. I especially remember having these depressed feelings when I was in high school and had to deal with normal peer pressure. I think in my case, my PKU probably amplified the high school depression some teens find themselves in.
Craig says, "I remember getting mad often about PKU. I would hate to drink my ‘drink’ and that would occasionally set off some anger about PKU. My parents dealt with it by telling me why I had to do this and it was for my best health. I was young and didn’t care much about that, though. So occasionally I got punished. But it was really their attitude that helped: "This is something you have to do, just do it." The other three in our group do not remember such feelings.
Sarah F. says, "I began to feel different as I got older. This was mainly because of the clinic testing every year (I was part of the National Collaborative Study of PKU). It is hard to think you’re like everyone else when every time you see a doctor they give you an I.Q. test. Moving to a small town in Maine when I was seven years old also contributed to my feelings of being different. It is the kind of town where if you weren’t born there, you are automatically an outsider and thus different. The feelings of being different bothered me so much that I eventually went off-diet. But now that I am older, I realize that being off-diet didn’t make me feel any less different."
Jon relates,"I do remember feeling different, especially when I was taken off diet at age 6 (interestingly). I was confused about what I could and could not eat. And I didn’t even recognize the regular foods for what they were." Tracy says, "I remember knowing that I was different in terms of what I could eat, but I don’t think I ever consciously considered that difference to be a major factor. In retrospect, I do believe that my PKU had some bearing on my interaction with people I didn’t really know well, but at the time I didn’t make the connection. I was always shy and ‘standoffish’ around people I didn’t know and never had any good friends, other than neighborhood kids, until my later years in elementary school."
John says, "Yes, I knew I was different, and so did everyone else. But my difference was accepted, and never really got in my way." Sarah P. remembers, "Around sixth to ninth grade, I did feel different from other kids. Around that age all kids seem to have problems fitting in and figuring out who they really are. Dealing with PKU at that time was kind of difficult. I just wished more than anything that I didn’t have PKU and I could be like everyone else. However, going off the diet was never an option for me; I just tried to hide it as much as possible from other kids. But that made me feel bad; I felt like I wasn’t being the real me. Eventually, I learned who to tell and who not to tell."
Craig remembers, "Yes, I felt different. But I grew up in a small town and everyone knew everyone. My diet was normal to so many people that I was usually pretty comfortable in my surroundings. When I was out of my element I would definitely feel uncomfortable, different, and embarrassed, but only when the subject of food came into play; otherwise I was as normal as the next kid. I also had (and still have) a very outgoing Type-A personality. It would take more than a diet to make me shy and reserved!" Stephanie adds, "When I was growing up, I didn’t really consider it ‘different’ but rather ‘special.’ That is what my parents told me, and that is just how I grew to view it."
Our group had a varied experience with formula drinking. Three out of the seven did not like the formula when they were young, disliking either the flavor or the "lumpiness and grittiness." Sarah P., Stephanie and Tracy have never had a problem with their "milk" and either like it, or "don’t mind it" and recognize that it fills them up.
Most of our group remembered knowing about which foods were and were not on their diet from a very young age (Stephanie remembers age 2). They admit that they did not take responsibility for diet management as soon as they might have, with the exception of Sarah P., who says "I was given responsibility to count my exchanges basically as soon as I was able to count. I helped add my exchanges and told my mom what I ate during the day." Stephanie says, "With all three of us having PKU, mom took on most of our diet herself. But we sure knew high and low foods and let her know if we ate something at school or elsewhere. We were introduced to the scale at a young age, but they kept track of most of our exchanges." Tracy says "Although I started cooking when I was 9 or 10, I’m kind of embarrassed to say that my mom was still making my formula for me until I moved out of my parents house when I was 20!"
Six out of the seven young adults admitted to eating non-diet foods at some point as they grew up. However, for the most part this was a short-lived problem. Stephanie remembers, "I ate one dry roasted peanut—once! My mom found out, we talked about it and she reminded me if I didn’t follow the diet I wouldn’t remember the names of my friends and I would not be able to read all those books I so loved to read. I stuck with my diet from then on and have never cheated again!" Craig says, "When I got caught I would get punished just as if I had done something wrong, like playing ball in the house and breaking a lamp (many times!). I think this was a fine way to handle a cheating situation. I got the idea that it was bad, and I got caught, now you pay the price and don’t do it again."
Tracy says, "My mom dealt with this problem by sitting me down and telling me that the diet was for my own good, and when I sneaked foods I shouldn’t I was only damaging my health. She supported this by pointing out that I was sleeping a lot more and probably had already done some damage to my body. The fact that I had quit sneaking foods a few months later was evidence that what she said worked. "
While each of the seven young adults have different life experiences growing up with PKU, they agreed unanimously that parental attitudes are of key importance in shaping a child’s outlook on PKU. The attitude parents convey to their children when they are young definitely carries over into adulthood (more on this in Part II).
Sarah F. says of her parent’s attitude, "I guess you could call it a no-nonsense, matter of fact attitude. Everything was black and white; there were no gray areas. I had to drink my formula. I could eat this and only this, etc. My parents said, ‘you have to play with the cards you are dealt’ and basically that was it. When I was a child the attitude was a good one. But, as I got older, it really didn’t give me a lot of ‘wiggle’ room. They were so strict with me that it seemed like my only option was to swing totally the opposite direction (and eventually I went off the diet)." Jon says, "Basically, my parents were very supportive and they helped me to stick to my diet any way they could. Even after I went off the diet, they tried to make me stick to a strictly vegetarian diet. And my mother always reminded me to drink my ‘shake.’ In fact, she often would make it and put it in front of me and would not let me leave till I finished it. Because of my parents attitude, I never felt ‘out of place’ or different so much. I was special. That’s the word my mother often used."
Tracy relates, "My parents always treated the diet as a way of life and I never got the feeling that it was considered a central or defining factor in my life. While I know dealing with the diet and keeping me and my brothers satisfied must have been a major ordeal, my parents never made it seem like that to us. They never let me know of their anger and frustration over dealing with the diet. I am sure that they had these feelings, but they took great pains to keep me unaware of them. I think this probably made me feel more like a normal kid than almost anything else they did." John adds, "The best way to explain the way I remember it in my family is that it was, "we are doing our best to cope with this, and so should you, so let’s do it together. This attitude worked."
Sarah P. remembers, "As a child, my parents tried to make my life as normal as possible. I never thought I was any different than anyone else, and I never let my diet stop me from doing anything that I want do. I think the most important thing my parents did for me when I was younger was never trying to hide it, and never letting it stop me from doing anything that I wanted. They gave me such confidence, even with things as small as ordering something special in a restaurant. They weren’t afraid to do that, and they didn’t let ignorant people bother them over comments about what I was eating."
Craig says, "When I was young, my parent’s attitude towards my PKU was very serious, but something that we could joke about. It was a challenge for them. They were young, and I was always pushing the limits. But I was very aware that it was very serious and I was to eat correctly. They never made me feel self conscious about the diet, but at the same time they never tried to hide it. They just made it seem normal. They tried not to treat me much different than my non-PKU younger brother. Examples were when we went out to restaurants, my mother would always explain to the waiter I would be having veggies and French fries because I was on a special diet. Like, its no big deal, just bring him a special meal. I eventually took that attitude with my friends. I think this was a great attitude to have. Just lay it out in the open like it is as normal as turkey on Thanksgiving. If they tried to make it seem that I was ‘special’ I probably would have felt out of place."
Stephanie says, "Because of my parent’s positive attitude about PKU and because both of my siblings also are on the diet, PKU made me ‘different’ only at meal time. We had our plates to eat off of and they had theirs, although there were still lots of things we shared. My parents always corrected anyone if they made a ‘wrong’ comment about any of our food or formula. It was something we would have to deal with for life and she made sure everyone appreciated the foods we could eat. Birthday cakes were always shared—and anything else anyone wanted to try. Everything was served with a smile. I strongly believe that the parent’s attitude is of utmost importance. My formula never had a bad smell or funny taste, it was just different. It’s just how it has always been with my parents."