Sarah F. says, "My parentsí attitude toward the diet ultimately helped me. They were so strict with me that it is almost easy to stick to the diet now. I am strict with myself but I also know that I can give myself a little Ďwiggle room.í Parental attitudes are key. If they make the diet a big issue, it will be. If they are so controlling and nervous that the child doesnít have room to wiggle, he/she will probably wiggle all that much more."
Jon adds, "A parentís attitude is so important. My parents were always supportive, positive and not overly sympathetic. My mom was always watching what I was eating and making sure I was drinking my formula. (Even today she will call me at home periodically to check to make sure I am drinking it!) When I was growing up, my parents didnít treat me any differently than my brother or sister. It all comes down to just the difference in our meals, not in our lives or our personalities. As adults and children with PKU, we must realize that we are Ďnormal.í We just canít eat like everyone else. That is attitude my parents instilled in me and which I keep today."
Tracy says, "The attitude my parents conveyed has defined my outlook on PKU as an adult. I have accepted PKU as a fact of life and donít treat it as any sort of central or defining factor. I try to never lose sight of the fact that if circumstance had been just slightly different in my birth, diagnosis, or treatment, I would not be writing this story today. In my opinion, parental attitudes are probably one of the most important factors in the life of a person with PKU. If parents treat the diet with respect and never let the child feel like a burden, I think it is more likely that as their child gets older, he or she wonít consider their life to be much different than any other personís. However, if the parents are constantly struggling with the diet and convey the attitude that they have been punished with an overwhelming responsibility, their child has a greater chance of growing up angry and unhappy about having PKU."
Sarah P. agrees: "I believe that the attitude my parents had as I was growing has greatly influenced me and helped me since Iíve gone on to college. When I was a child, I was never prohibited from doing anything because of my PKU. I began going to summer camps when I was in first grade and attended a sleep-away camp in fourth grade. Drinking my Ďmilkí and staying on my diet was of the utmost importance when I was a kid; going off the diet just wasnít an option! I remember sitting on my dadís lap and drinking my milk every night after dinner while he read me a story. I believe that parental attitudes are so important. If parents lay down ground rules early on, children will realize how important staying on the diet really is. Then as they grow up, hopefully they will stay on it."
Sarah F. says, "I am Ďplaying with the hand that I was dealtí and I am winning the game! The difference is that now I am the one deciding how the game is played, and I ultimately determine its outcome. That makes all the difference."
Jon relates, "My attitude is positive. I donít have a problem with having PKU. Itís Ďsecond natureí and I just donít think too much about it anymore. You just do what you have to do and go on with your day. I have my parents to thank for that attitude. I have great will power for which I thank PKU. I donít think I would have had this were it not for PKU."
Tracy adds, "My overall philosophy is that PKU is a part of who I am and nothing is ever going to change that. I personally donít really consider the fact that I canít eat the same things other people do to be that big of a deal. It is true that the diet sometimes can cause some awkward or irritating situations, but I believe that dealing with those situations is preferable to damaging my health. I have never really been off the diet for any length of time, but there have been a few days at a time when I was not able to take my formula. I know that some adults say that they canít detect a great change in their health if their blood levels are high, but I sure can! If I havenít taken my formula for a day or two, I have to sleep 12-13 hours per night and take a 2-hour nap every afternoon to even be able to function. Then, my Ďfunctioningí is in a tired and lethargic state. If I ever went completely off the diet I have no doubt that my productivity and ability to do any work would be nonexistent. To me, this does not seem like a very appealing way to live in exchange for a few morsels of tasty food."
John believes that "sticking to the diet is a major thing. But as far as life goes, the only real philosophy is to enjoy it to the full, and PKU doesnít get in my way of doing so. My diet hasnít prevented me from doing anything. I have traveled a lot, even sat in the waiting areas of Greyhound Bus stations mixing my formula! PKU just does not hinder me."
Sarah P. says, "Like anyone, I have days when all I can think about is how much I dislike PKU and Ďwhy do I have to have it?í But usually, Iím just glad itís treatable and that I donít have something thatís fatal. One of the only things that really bothers me is when friends tell me theyíve learned about PKU in a class. Almost always, I find that it is included in discussions about mental retardation. But in the end, having PKU is just a part of me, who Iíve always been."
Craig has a slightly different experience: "Living with PKU in the present is challenging, at best. I spent 13 years off the diet. Now I am on this diet Ďfor life.í It was hard enough to be on it from birth to age 18 when it was the only way I knew how to eat. Now that I have eaten Ďeverything there isí and enjoy it, it is much harder. I want to do whatís best, but I find it very difficult to stay on the diet after Ďbeing on the other side.í My recommendation, is never go off the diet; getting back on it is a rough road!"
Sarah F. says, "Managing the diet really doesnít influence my social activities. I think about what I am doing and where I will be going and plan accordingly. If I know I am going to a hockey game and we are going out afterwards, I will bring my evening formula to work and drink it there or at the game. I wonít have a lot of high phe foods during the day, knowing that I will probably have French fries later. I have never not gone anywhere or not done something because of PKU. On the other hand, I am sure that to some extent managing the diet influences my life choices. I really canít imagine being friends with or caring about someone who isnít flexible and understanding of PKU, the diet, and me!"
Jon adds, "I donít think it has ever been a social issue for me. Iíve always had a lot of friends, in college and now. I have always been very social, going dancing, to movies, restaurants, etc. PKU just has never taken any toll on my social life."
Tracy says, "As a student, I often get invited out to eat or to parties. When going to restaurants, my friends and I always try to choose somewhere that will have food I can eat. Since so many places have vegetarian entrees this choice usually isnít that difficult. When I go to parties I usually try to eat something like low protein pasta or rice before I go so I wonít be hungry and tempted to eat high protein foods while there. A few months ago I was invited to a potluck party given by female physicists. I took a wide assortment of fresh vegetables and a couple of dips. The vegetable relish tray was praised by many as the best food item at the party!
I donít really think PKU has had too much influence on my other life choices. I am resigned to the fact that PKU would probably make it very difficult to get a position in astronomy outside of the U.S. because of the politics involved in obtaining the formula and medical care. However, I donít think I want to leave the U.S. anyway!"
John says, "PKU has only slight influences on my social life. When I go out to eat, I donít eat at McDonaldís, or Burger King, but go for Indian and Chinese food where I can find better diet choices."
Sarah P. says, "PKU doesnít hinder my social activities at all, but I need to plan in advance sometimes. It was more challenging when I lived in the dorms. For part of the time, I was on the school meal plan. I also spoke with my dorm director and was able to use the refrigerator in the basement kitchen to store frozen food. But now that Iím in an apartment, I find it so much easier to cook low protein things."
Sarah F. admits, "Yes, I do have some feelings of anger and sadness about having PKU now. It is difficult not to have feelings of loneliness at times, despite the fact that I have developed some good PKU friendships. But the fact still remains that there are very few adults who are on the diet. Tracy Beck and I are now great friends, and Ďtalkí via e-mail at least several times a week, if not several times a day. It is nice to finally have someone whom I feel I can talk to. Also, I get angry sometimes that there are no clinics for adults. Though we have grown into adults, the medical community as a whole has not grown with us. I also get angry at the insurance industry and the fact that so many adults have problems getting coverage for the diet. Finally, I continue to deal with anger towards myself that I went off the diet. Iíd like to think that I am using the anger I have in a positive, constructive way. I try to use it to make changes in the present and the future for people living with PKU. Someday I would even like to find a way to work with PKU on a professional level."
Jon says, "Iíve never felt any sadness or anger for having PKU and Iíve never had a negative attitude toward it. I must thank my parents for my good upbringing! Their positive attitude toward PKU definitely rubbed off on me. Iíve always had the attitude that I can do anything or be anything. I hope I have such a positive influence on my childrenís lives as my parents had on me."
Tracy adds, "I have no angry or sad feelings toward PKU now. In fact, I definitely think that my PKU has made me a much stronger and more tolerant person in dealing with life situations."
John says, "My attitude is that you are dealt a hand, and these are the cards you have to play with, so get on with it! If other people have trouble accepting my PKU, it is only their ignorance getting in the way, and not my problem. If I am Ďdifferentí it is only slightly, and my friends accept it. So Iíd say that I am positive about it. Difference really is the basis of individuality!"
Sarah P. adds, "I donít really have any negative feelings about having PKU any more. I think when I felt any at all was in junior high, when everyone feels that way, and they just want to fit in. Now, PKU really is just a way of life for me and I view it in a positive way. I simply realize that what works for other people doesnít work for me."
Craig says, "I have no ill feeling towards my PKU. It is as normal to me as my right arm! I speak freely about it. The more you accept it as being normal, the more everyone else will. And for those narrow-minded folks who find it odd and canít get past it, well, that is their problem!"
Sarah F. says, "I really donít have any problem with food restrictions. If you think about it, it is actually pretty easy to eat Ďlow.í There is so much out there now that is low-protein. The thing that happens occasionally is I wonít think about it and eat more potatoes or some other fairly high item than I should. But that rarely happens now. After going back on the diet, it took me a while to know what I could have and how much. Actually, one of the hardest things for me to understand was that I have to eat some phe. A couple of times my levels have come back so low they were unreadable. At first, it was hard for me to understand why that was a bad thing. I have always loved cooking, which has definitely helped a great deal in being able to maintain my diet. Now, I just cook low-protein foods instead of high protein ones."
Jon says, "Restaurants are the hardest; not Ďfast food,í but real restaurants. The food looks so good. I know I was taken off the diet at a young age because the doctors thought it was the right thing to do. But now that I have eaten everything and tasted all of the Ďrealí food it is sometimes hard not to eat it again. But I do have great will power and can sit through someone next to me eating a course of lobster and steaks while I eat my veggies and not be tempted by it."
John says, "Generally I donít have any problems at all with the food restrictionsówell, other than the fact that I am lazy and sometimes cannot be bothered by cooking, so I visit my mum!"
Sarah P. says, "I probably donít count phe as well as I should, but when Iíve had too much I get a strange, foggy, headache-y kind of feeling. Iím just tired and ornery and actually want to drink my milk. Thatís what helps me get back on track if Iíve diverged. I find it hardest to stay on the diet in any social situation where thereís food. At home or in my apartment, itís fine. My roommates know and understand my diet and I donít feel odd. But even now, sometimes in social situations, I just want to fit in and order something normal in a restaurant instead of something special. But it depends on the people Iím with. If Iím with people I know and who I know understand PKU, then Iím fine with ordering special things."
Craig adds, "When I shop for food in my home, I only buy food that I can eat. But when I eat out, it is not so easy. Unfortunately I eat out often. I am always working at getting more strict with my diet choices, though, and never imagine giving up."
Sarah F. acknowledges, "Iíd be lying if I said I love my formula. But, I donít really hate it either. It is just something I know I have to drink. Formula was the number one fear I had about going back on the diet and whether or not I could be successful. I wasnít sure if I could drink it. I have terrible memories of it from when I was young. But now I drink XP Maxamum with Fat Free French Vanilla Coffee creamer and it is not a problem."
Jon says, "I drink my formula twice a day, morning and evening. I Ďchugí it down and it doesnít taste bad. In mid-afternoon I take the SHS Phlexy-10 tablets. The tablets make it easy; I just take 10 or 12 at a time."
Tracy says, "I have a problem with the formula, but not because of an aversion to the taste. My problem stems from the fact that no matter what I do or where I turn, I canít seem to find a reliable way to get my formula. It seems to me that some states have yet to acknowledge the fact that PKU children grow up! Most states donít have decent programs to provide adults with formula, so those of us who donít have insurance policies, or live where there is no insurance law, have a big problem!"
Sarah P. says, "I drink my formula three times a day, a mix of Phenyl-free and Maxamum XP. Iíve never had any problems drinking it, although Iím not a big fan of the Ďnewí Phenyl-free (I find it too sweet!). I did attempt taking the Phlexy-10 pills, but I couldnít stand them. To me, they still smelled like the formula, and they made me gag. I guess I just donít like change!"
Craig says, "At this point in my life I really am only about 50% on the diet. I drink my formula when I can, but it is hard when I travel so much. Not drinking it as consistently as I should does manage to provide a constant nagging guilt in the back of my head!"
Sarah F. offers her wisdom: "Give kids choices. Make them part of the decision-making process so they feel like they have some say in what is happening in their life. You have to decide which is more important: Ďwinning the battle or winning the war.í Talk to your kids about PKU. Teach them how to cook. Be a role model for your kids. If you wouldnít eat it donít expect your kids to. It is relatively easy to make food that is low in protein but excellent in taste and appearance. Try your kidís foods. Try their formula. Donít say you know what having PKU is like because you donít and you canít. Take them to every PKU event possible. Meeting others with PKU will help them to know they are not alone. Talk frequently with other parents of children with PKU. Vent about the stresses you feel with respect to PKU to them rather than letting things build up inside of you. Sometimes Ďtough loveí is the best love. Do every thing you can to develop your childís self-confidence and self-esteem. It will help make dealing with questions and hard times a little easier for them as they grow up."
Jon says, "The best advice I can offer is to be positive, even if it is difficult, because you will have a tremendous effect on your childrenís attitude. Donít treat them too differently and donít Ďbabyí them just because their diet is different. Count your blessings and thank God that the child before you only has PKU, a treatable disorder."
Tracy adds, "Donít make PKU a defining factor in your childís life. Involve your children in extracurricular activities. Make sure that they always have the chance to play with other children and Ďjust be kidsí. If you have troubles dealing with the diet, like problems with your child taking formula or getting him or her to eat something, try not to act like it is causing you heartache."
John says, "I find it hard to give advice, but one important thing is Ďseeing is believing.í At PKU events, my adult PKU friends and I astonish parents. They always say they Ďnever would have knowní if they hadnít seen us eating ĎPKU food.í This tends to be great reassurance to parents, so I advise parents to try to meet early-treated adults with PKU. Also, I think that parents should believe that Ďthings arenít as bad as they seem,í whatever the problem, and things will get better."
Sarah P. says, "Be sure to cook lots of low protein food! Iíve been blessed with a mother who loves to cook, and that has helped me a lot. She cooks (and I help), and I put a lot of stuff in the freezer here in my apartment for handy meals. Also, donít be afraid to have authority. When I was little, I stayed on my diet, period. It wasnít Ďmy choiceí. As long as I lived under their roof I stayed on the diet, because that was best for me (not that I really wanted to go off)."
Craig offers, "The best advice I have for parents is to treat your children with PKU the same as you would any of your non-PKU children. Donít make an issue of it. Educate them, guide them, and let them grow and be. PKU is a part of your life that you learn to live with. Itís mainly just a diet. Remember that at any one time, a big part of the U.S. population is on a diet!"