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By Margaret Klaphaak (mother of Adam Kemple)
We are a family of four. I was a special education teacher at one time, but now work with relatives on organic farming. I also do a lot of volunteer work and work with Home School families. I also do school-based. My husband, Adam's step-father, works for Indiana University Southeast in New Albany, in computer services. Adam's older sister, Sunshine, is 23, married, and recently out of the Marines. She and her husband live about 3 hours away from us in Terre Haute, Indiana. Adam is currently a junior at Vincennes University in Vincennes, Indiana, majoring in printing technology.
Dealing with the Diagnosis and Beyond
Adam's father left the household when I was about 7 months pregnant with Adam. His sister was about 2 1/2 years old then. I was upset enough already when Adam was born, without knowing about his PKU. When his PKU was diagnosed, I was frantic since I also believed Adam was destined to become retarded. This is because one of my cousins, born in 1946, had PKU and was undiagnosed until he was 11 or 12 years old. By that time, he was already quite affected by high phe levels. When we found out from the PKU clinic in Louisville that PKU was treatable with diet, it was a huge relief. I thought then that it would be smooth sailing—and it was, considering the other problems surrounding us at that time.
Since I became a single parent before Adam was born, my support came from grandparents and extended family. Managing the PKU diet was a unified and consistent effort from all his care givers/relatives. There were never problems with that issue. There were the typical emotional problems and repercussions from the divorce that have had far more of an impact on the kids than PKU. We really had few problems with the PKU, and definitely did not come from any family members or their attitudes. (Both children are now working through feelings of dealing with a drinking, alcoholic father.) The PKU story is a victory for all of us.
When I remarried (Adam was 10 years old), I gave my husband all the written information on PKU we had. He went through everything and read it thoroughly. Over the years, Kirk has been very well educated and supportive on any PKU issue. We really haven't had any of the typical "blending family" problems, either. I'm very grateful for that.
Raising a Successful Child
Adam had a good attitude about PKU while he was growing up. He was always thinking of other things and didn't dwell on food and eating. Adam didn't really ask many questions about the diet when he was growing up. He just accepted things as they were presented to him. We may have told him a few times that "forbidden foods" would "hurt his head." We never had problems with Adam taking forbidden foods, only wanting more of what was allowed. We switched Adam from Lofenalac to Phenyl-free formula early on (by the time he was 2 or 3 years old, I believe). I feel this was very important to do at an early age as he switched without any problem.
Because of Adam's diet, the whole family began to eat more vegetables and fruit—the better for us. Most meals were simply prepared with plenty of vegetables. The rest of us had a small portion of meat along with the vegetables. Adam ate most anything that was prepared for him when he was younger. When he was older and I was able to have a garden, I prepared more recipes and had more variety. But by then he was not very interested in trying new things. I would have liked to have more choices available to him when he was younger, but I didn't have the luxury of time then, being a single mom and working. He did have very good levels when he was growing up, but much less variety in the foods he ate.
In grade school, I told the teachers about Adam's diet restrictions and provided treats for special occasions. Adam was providing his own lunch, which was more nutritious and appetizing than the school lunches. Occasionally he had a few comments from other students about his formula smelling like potato water, but this didn't seem to bother Adam.
In general, Adam cooperated with the diet throughout his teen years. Everyone involved in his care followed the diet and were dedicated to seeing that he did not stray from it. This also meant that Adam had a lot of special foods prepared for him. I think it has been hard for him to break this pleasant habit and prepare foods for himself!
By the time he was in high school, he had become a track star, winning many awards and holding several school records in high jump and high hurdles. He was questioned several times about the contents of his lunch from other students, as if the Phenyl-free was like a steroid, or illegal from the athletic point of view. All this did not bother Adam, but just fed into his "track star image"—a positive thing, as far as he was concerned!
After Adam's first year in college, I think I've seen a little of this "rebellion" I've heard about! Adam is used to the "approved" foods, and is pretty narrow minded about trying new recipes, so he has not been eating forbidden foods—just overeating the approved foods occasionally, or consuming his full daily allotment of phe at one meal. In college, he has lots of plain cooked food to chose from in the dining hall. He makes visits home to restock on baked goods prepared from all of us back home. He also takes back lots of canned goods to cook in the dorm for snacks.
Maybe since Adam has always been superior in athletics, the coaches were more than helpful with his diet in high school and in college. His college coach, Bill Smith, takes a grill and food along for track meets. Since Vincennes is a small college, the coach has a very small budget, anyway.They just make sure they take along vegetables and fruits on trips. Adam prepares Phenyl-free ahead and keeps it in a cooler. The coach is a good friend of Corinna Vonderwell, mom of two young children with PKU. She works in administration at the University. As a result, the school knew about PKU before having to deal with Adam. I feel that dealing with the PKU in college has been easy, but it was because Corinna had "laid the ground work" before Adam became a student.
Adam and his sister, Sunshine, have always been close although they have different dispositions and personality. When Adam was an infant and his sister was 3-4 years old, she hated Adam's blood test. "That stupid doctor doesn't need all that blood." (Blood tests have never bothered Adam, only Sunshine.) She also recently said that growing up she somewhat resented having to eat out at just certain places that would have a variety of acceptable foods for Adam. She does not carry a grudge now and she never even expressed then what little resentment she had about PKU. Now that she has been married a few years and through the Marines, she has different points of view about many things. Basically she has grown up and is an adult now. She says she is okay now with the PKU. In fact, she sold raffle tickets earlier this year to support PKU research.
A Chance to Brag
Because of PKU, I think Adam understands very keenly how you must work hard through your adversities. He is very determined to succeed in whatever he does, whether it is sports or academics or whatever. PKU has been a minor issue in comparison to the problems we have had to face as a family. Adam not only has survived everything, but has a great sense of humor and sense of fun (for example, he loves to play games and is a Limbo champion! He is willing to try anything, is fun to be around, and just has a really positive outlook on life.
Reflections of a Parent
I think it is luck with Adam's own general attitude toward PKU that got us everything so far. I believe it is the disposition he was born with that has made the difference, rather than something we did or did not do at home. True, we have had a lot of "at-home people" who have cooked and prepared foods for him. Also, I eventually left my job in education to make sure that Adam had what he needed and was prepared for independence in later life. This choice was not based on the PKU per se. I had been teaching special education and I was doing more to help raise other's children than my own. Maybe other families can do it all, but we were not able. Things ran better as a family for us when I left teaching. We were able to pay more attention to PKU and to family life in general. I am glad we made that choice and I was lucky to have the opportunity to make it.
It was very difficult being a single parent, but somehow we managed. Based on my experience, here are a few bits of advice to other parents:
Try to give your kids a lot of food variety early on. Never let kids, at any age, see that you have a dislike for any food. You need to have many choices available, now and in the future.
Teach your kids to prepare their own formula from an early age. Adam also prepared his own formula without supervision since age 12 or earlier.
Have children participate in preparation, counting phes very early on. Don’t think that the early teen years are soon enough. Your child will resent having to suddenly do this chore.
Try to get children to take their own blood as soon as possible. When we went to Vincennes before college started, we visited Corinna at home. Amazingly, two year-old Kaleb did his own stick and applied his blood to the paper! Up to this point, Adam's blood draw was a two-person effort (his and mine) because we used tubes instead of filter paper. When I saw how Kaleb took blood, I contacted the Louisville clinic and we got the paper. Adam is still clumsy at his own draw and this should have been started sooner.
Try to find opportunities for your child to meet other children with PKU. I think contact with other kids with PKU is important. Many kids need it. Adam really didn't seem to, but when he did meet those with PKU, he said it was nice to know he wasn't alone. They were able to talk about a few things that only someone on the diet knows about, like phe levels, types of foods, blood tests.
Managing the PKU diet from birth to present has been remarkably smooth for us. It really has been almost "too good to be true." This ease likely has been in part because of the other problems Adam has had to work through. The diet is "normal" to him because it has always been this way. I think the management of PKU and the expenses that may or may not arise for him as an adult will be the PKU issue that will effect him most. But we know Adam will never give up the diet that has allowed him to be so successful thus far in his life. He is a fine son and we are very proud of him.