Community Discussion Forum Parent support Effect of Exercise or Sports

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    Avatar of Jessie

     Hi everyone,
    Does anyone know the effect of exercise on phe levels?  I have a seven year old son with levels  under 6 until recently when we had one just above.  We're monitoring more frequently now and I'm curious to hear from anyone who may have been in a similar situation.  I don't know if I should be an advocate for him to try to have him treated or not.  I am also very curious as to the effect of exercise on phe levels and can't seem to find anything online.  Essentially, my son ran a one mile race in very hot weather and afterwards, was very warm, of course. I know that fever can increase phe, but what about other things, such as exercise, that increase your body temperature.  About 2-3 hours after the race he had a very tough time controlling his impulses and had erratic, wild behavior.  I do appreciate anyone's comments.  Thank you!

    Avatar of Breanna

    Exercise can effect phe levels. The way I understand it though is that it is not due to an increase in body temperature. Instead, calories are being burned just like they would be when your body is working hard to fight off illness. After those calories are used the body can sometimes turn to breaking down muscle to get energy. Because muscle is essentially made of protein, when this happens protein is basically being put into his blood stream.

    Back in middle school when I started track and field I was told to drink formula shortly before becoming active, because my levels had increased a little bit. This gave my body a small boost of extra calories and phe-free protein to burn off while I exercised.

    Avatar of Priscila


    I have been studying exercise effects in hyperphenylalaninemia since 2010 in south of Brazil.

    Since this field has not been explored yet, our experiments were only in animal model of PKU. We have found good effects of aerobic training on antioxidant system, some hormones and behavioral tasks.

    Now I am starting a project aimed to evaluate many parameters after one session of exercise in PKU patients which will be sponsored by the PKU Academy.

    I hope bring interesting and useful information for you soon!


    Avatar of Rick

    Pricilia I am just starting Kuvan and I am going to be exercising a lot I am in a wheelchair please let me know how excercise affects PKU Phe levels.

    Rick Lewis

    Avatar of Priscila

    The project that I am starting now will show more details about exercise!!

    At this moment, we have found good results in antioxidant status in the brain of an animal model of hyperphenylalaninemia…

    I will attend the National PKU Alliance Conference in Philadelphia next week where I will present these results in the poster session. 

    All the best,

Viewing 5 posts - 1 through 5 (of 5 total)
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