|
|
Our daughter, Michelle, was born in 1971 and diagnosed with PKU at 10 days of age. She was well-controlled on her diet, with most phe levels between 6-8 mg/dl (360-480 micromol/L). She did very well in school, until about the seventh grade. Then, if she did not like her teacher, she did not work hard. Her attitude did not interfere unduly with her school work until she was in the ninth grade. Then, all she wanted to do was to fit with the other teens. Her phe levels usually came back O.K., but she made a practice of being good on her diet for the week before the test. In fact, we knew she was cheating although she denied it. Throughout her teen years, she was rebellious and difficult. Now, I look back and think that some of her behavior even then had to do with her high phe levels.
At the time, I had no idea behavior and phenylalanine levels could be connected. We were told not to stop the diet because of the maternal PKU issue; otherwise, we had heard that stopping the diet after age 15 was not a problem. Our daughter was not followed by a PKU clinic; we live in a rural town and no one had ever told us there was a specialized clinic in our state! So, the things we heard about PKU came mainly from a dietitian.
When we refused to let our daughter go off the diet, we became the 'bad guys' in her view. We discussed the issues of maternal PKU with her, but she did not want to hear these things. I thought she should stay on the diet for as long as she could, at least until she was mature enough to make her own informed decision. Michelle viewed staying on the diet as a punishment and continued to rebel against it and against us.
Despite her difficulties, our daughter graduated form high school in the honors program. She liked soft ball and journalism classes (for which she received an award). But she did not perform up to her capacity. To graduate, she had to attend summer school to make up for several failed courses.
After high school, our daughter had no particular aspirations. She went to college for three "quarters," then dropped out. By this time, her phe levels were out of control. She was still drinking the formula and ostensibly was on diet at home, but she was not following the diet when she was out of our sight. She left home in February 1991. The minute she left, she stopped the diet completely. She went to a friend's house, then began living with a boyfriend (which we did not know until later). She started working in a hospital pharmacy as a clerk. During this time, she was having little to do with us. She rarely called and never visited us for more than 15 or 20 minutes at a time the whole time she was off the diet, a 3 1/2 to 4 year period. We knew things were not going well for her, though. When she would call, we felt she wanted to talk about what was bothering her, but she would never admit to a problem.
In September 1994, we found out the shocking story. Our worst nightmare had come true. At the age of 22, our daughter had been charged with a felony and was facing a long prison sentence for stealing drugs from the hospital and giving them to her boyfriend to sell. We were devastated and heartbroken. What had happened to our daughter? While she had been rebellious, she had never before flaunted the law.
Michelle's homecoming after we posted bail was emotional and tense. We were very struck by her behavior, which we had not had a chance to really observe for years. She seemed almost psychotic. She cried over the most petty things, and seemed unconcerned about the gravity of the crimes for which she had been accused. She was matter-of-fact about the charges of a felony, for which she could go to prison, and intensely angry with us. Her behavior seemed inappropriate, her sense of reality skewed. Even the prosecutor could not believe her flat effect in recounting the acts that had resulted in her arrest. She neither cried nor seemed embarrassed or apologetic. Instead, she acted as if she were working for the police!
When she came home (mid-November 1994), she also had many physical complaints. She complained of feeling sick, with headaches and lack of energy. She wanted to sleep all the time. We thought she needed psychiatric help. First, we took her to a genetics clinic. They said they didn't know about any relationship between high phe levels and personality or behavior when we questioned such a possibility. Finally, a nutritionist at the state health department told us about the state's PKU clinic. Between Christmas and New Years, for the first time, we found out from the PKU clinic there was a relationship between phe and personality! We were told Michelle needed to restart diet.
Our daughter was highly resistant to the idea of going back on the diet. She failed to see that there was anything wrong with her. When we finally dragged her to the clinic, she was angry the whole time. I told the doctor the entire story and asked whether there was a connection to PKU. The answer was definitely yes. The doctor then was able to talk Michelle into trying the diet again.
Michelle has now been back on the diet for over a year and is doing terrifically. She is like a different person! Her demeanor is so calm compared to before. We used to argue every day about petty things. Now, we almost never have an argument, and then, only over important issues. We have gotten very close; for the first time since she was young we honestly like each other and are 'best friends'. It is very gratifying for both of us. Her terrible headaches have disappeared and all of her physical problems are gone. Even her attorney noticed a dramatic change in her personality after she returned to the diet.
One of the most rewarding things is that she realizes when she strays from the diet. She has physical and emotional changes. For example, her temper flares noticeably and her headaches come back. She will get herself back on the diet without a struggle. She is more outgoing and confident now. She has a new boyfriend who is a college graduate, mature and thoughtful of her (so unlike the young men she used to gravitate toward). Her self-esteem has increased dramatically. She has a steady job and is trying very hard to 'get on with her life.'
Of course, the sad remnant of her off-diet 'madness' is that she altered her life irreversibly by her actions. She was charged with a felony in not one, but two states and faced a long prison sentence. To our great relief, the charges were dropped in one state (we believe this was largely due to letters from the PKU clinic and Virginia Schuett, explaining the link between PKU and behavior). Still, she is on probation for another twenty years, limiting her choice of jobs and thus her future. Also, she must pay back a large sum of money. And she still faces charges in the second state. (Note: After the publication of this story in the newsletter, all charges against Michelle were finally dropped.)
We hope our sad story will help convince other families and young people not to foolishly stop the diet; we believe that returning to the diet has made all the difference in the world for our daughter.
Some people become born-again Christians and never go back to their lives of sin. That is how I feel about being back on the PKU diet.
Two years ago in April, I became a "born-again" convert to the diet, at the age of twenty-two. In that short time, my family and I have noticed some dramatic changes. I seem to have a constant flow of energy and positive thoughts. In fact, I have acquired the nickname "Tiger" because of my energy. My personality is much more pleasant, and I am full of optimism.
Looking back at my early school days, I was pretty easily satisfied with the diet. Kindergarten through middle school lunch was always neat. I had something totally different from everyone else, and did not mind. High school was a different story, though. I wanted to be like everyone else. "Fitting in" was very important for me, just as it is for every teen. My problem was letting that kind of thinking affect my diet. Adolescence is hard enough for any teen and their family, but twice as hard when the adolescent has an elevated phe level affecting his or her temperament! That can make for problems for anyone. It did for me. I went off diet at age 18 and am still paying the price. I will be paying the price for years to come.
Allowing yourself to go off the diet, or cheating and having high phe levels, can cause problems that will be with you for the rest of your life. I write from hard experience. Not long ago, I was facing a very long prison term, in a very cold jail cell, for drug trafficking a controlled substance. Can you imagine? I had been living with an abusive boyfriend and got mixed up in a quick easy money-making scheme. I don't know what happened to my judgement and reasoning. I had been off the diet for several years, and now I believe high phe levels took their toll. At the time, I just denied that I had a problem. Eventually the law caught up to both of us. I got lucky and didn't serve time in prison because of my cooperation with the police. It also helped to have some intervention from concerned people who knew the truth about high phe levels and how they can affect brain chemistry and thinking.
It took hitting rock bottom to realize that I was miserable with life in general. Thanks to Virginia Schuett's letter explaining what could happen to those of us who are not on the diet, and to the PKU clinic, I eventually realized the truth. Although my mom had noticed changes in my personality after I stopped diet, it wasn't until my arrest that we were all forced to confront reality head-on.
The physical side effects of being off the diet were noticeable, too. I gained weight, looked unhealthy, and had little energy and terrible migraines almost daily. I also had muscle cramps at night and got little sleep. Even my knees were swollen. All of these things did not make for a pleasant disposition. Since I have been back on the diet, all of these problems have disappeared.
The point I want to make is that everyone with PKU needs to be a strong individual. If you have PKU, only you can be your own 'regulator' and make life easier and better for yourself. Be grateful that you have an opportunity to be on the diet and have a normal life. You can be successful at whatever you set your mind to, as long as you stay on the diet! I hope you can learn from my terrible mistakes to keep your life healthy and on the right track.