Parenting teens and PKU

Parenting teens and PKU

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Parenting teens and PKU

July 28, 2009 in Uncategorized

Hello everyone, I am curious about parenting teens with PKU. My son has always cheated. His levels were getting very high until school ended. Then, his levels went back down. We know he is cheating at school (obviously). Here is our dilemna...the style of parenting that we have used with him centers around Natural Consequences. If he doesn't wear his coat to school in the winter, he gets cold. He went without once and now, he asks me what the weather is like so he can choose the right coat. We do not swoop down and rescue him from forgotten books or missed assignments. This has worked for him as he is teaching himself and we are not the bad guys. Trust is hard for him after years in foster care. The PKU is a little more challenging because high levels in him do not create an immediate consequence. Our clinic agrees that he needs to handle his diet. We are there to help him whenever he asks. He makes (and drinks) his formula everyday. He has taken a lot of responsibility. I guess I am coming to the realization that he will, in all likelihood, go off diet when he leaves home. So, is there anything out there that parents or teens with PKU could recommend? I would appreciate any and all thoughts. Stephanie

5 Reviews of Parenting teens and PKU

  1. Registered: Nov 29, 2007

    Posts: 0

    CAMPBELLTON, New Brunswick

    Hi, read your story about your son having PKU and the difficulties your family is suffering from PKU. Did you know that a child who born with PKU was also known as a PKU Baby. This really means that the person who suffers this disease will sort of always be a baby. As you mention, your son is forgetful. Totally normal for him. You must set a control environment for him. you will need to explain things clearly to him and make sure he understands exactly what u expect him to do. Give him love and realize PKU is controling him. I live with PKU everyday.The food I advoid is high protien foods, higher than 10 mg, yellow food color- tartazime, garlic, caborhydrate complex, pectin and asprin. If your son eats these foods he will suffer what is known as Flight Fight Syndrom which at night when he tries to sleep he will have what I say is the feeling the I can feel my blood running through my veins. Without a proper night sleep he wont be able to study or concentrate in school and be very forgetful. Hope this information helps your family.

  2. Registered: Jul 22, 2009

    Posts: 0

    Fairhaven, Massachusetts

    donnahon- Thank you for your advice. I may not agree with everything you said but I appreciate your approach to the diet. You are very strong to watch your diet and brave to handle the nighttime. My son actually sleeps very well. We will try to think about controlling his environment more. Thank you very much for the advice! Stephanie

  3. Registered: Aug 6, 2009

    Posts: 0

    , Ohio

    I don’t have any great advise, but can tell you you are not alone. My daughters are PKU and at the end of the school year had the highest levels they have ever had. Those levels have not come down over the summer. :( They cheat always and they do not drink the formula daily. It is such a battle when I try to intervene. I’m not sure there is much we can do as parents past providing them with all the information we can and hope they make good choices. It is harder to watch than the shivers when they choose the wrong coat though. I also try to allow the natural consequences guide my kids, but I think in this there is such a feeling of “it won’t happen to me” and since it is not an immediate consequence it is easy for them to think all is ok. Good luck.

  4. Registered: Jul 22, 2009

    Posts: 0

    Fairhaven, Massachusetts

    I completely understand the problem with natural consequences and PKU. It makes it hard for them to learn when they really don’t suffer any more with higher levels. Diabetics, for example, have serious consequences right away. Don’t get me wrong, PKUers have some blessings in their lives (a lot actually). I am so glad to hear others out there don’t have PKU poster children. :) I understand that I should eat more healthy foods and I don’t so I can’t expect my son to be any better. But, I agree that we have given them all of the information and support that we can. We set the examples. We have brought them to clinic and helped them grow to the age where they can now take care of themselves. That, in and of itself, is an accomplishment. I really appreciate your story. Thanks. Stephanie

  5. Registered: Apr 23, 2006

    Posts: 0

    linden, New York

    Hi MassPKUMom

    I don`t have teen with PKU and maybe I`m not sure how to handle it but I use to be one of those teens who cheated. every time I cheated and my mom find out that I cheat she made me to talk to my doctor and my nutricionist and I had to admit that I cheat I also had to tell them what did I eat. I was so embarassed that after 3 times I stopped eating on the side. you can`t control your son`s enviroment because when he will go to college he will do whatever he wants anyway. try to talk to him that our diet is very important!
    take care and say “HI” to your son :)

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