Community Discussion Forum Parent support New Studies…

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    Avatar of Nicole

    Have you seen these…

    I can't afford to purchase and read all of the articles….but the titles scare me.  My son is 3months old and my clinic promised me that his brain would be protected if we followed the diet.  And I was just finally starting to believe that he was going to be just fine and then I see this and I feel like I've lost hope all over again.  Help!?!

    Avatar of Sarah

    Don't stress out too much about them. My guess is they are addressing  poorly treated PKU.  There are definitely symptoms to poor control of diet later in life. Many of these studies were done because those of us who are older were told that we could go off diet after childhood. Doctors learned that diet needs to be for life. Because of that, there are many adults with PKU who still don't manage their diet. It's hard to go back on after years of eating normal. As your son gets older, you just want to make sure he understands the importance of being on diet for life. I have been off diet for periods of time. During those times, yes, I do have some issues WHEN I'm off-diet. I have symptoms similar to ADHD & bi-polar disorder. The symptoms do go away completely when I manage my diet properly. As long as your son stays on diet he will have no problems. I prefer my life on diet, which is why I'm very strict with myself now. Feel free to e-mail me if you have specific questions.

    Avatar of Breanna

    Sarah is right. Many of these studies are addressing issues that occur due to being off diet or having poor control of the diet. Years ago it was believed that children could go off of the low protein diet later in life after their brain is done developing. Of course today we know that's not true, and going off of diet at any point in life can cause issues. These studies are most likely discussing the issues that people who were told to go off of the low protein diet have experienced.

    Because Ace is on diet and being treated properly, your clinic is right, he will not experience any of these problems.

    Breanna 18 CPKU

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