Community Discussion Forum New to NEW TO PKU Reply To: NEW TO PKU

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I have 2 children with hyperphe. My son is 5 (starting kindie next week) and my daughter will be 2 very soon.
My children’s phe levels tend to range from 4-8. Rarely do they go below 4. Both of my children are allowed 1 serving of protein daily (1oz meat, egg, cheese). Other than that they are on a fairly typical diet (pasta, breads, McDonald’s fries!) I’m teaching my son to advocate for himself, especially about telling people he is not allowed products with aspartame.
My in-laws tend to think that since my kids don’t have 2 heads, they also don’t have hyperphe, and therefore can eat whatever they want – it’s just not true. We watch what our kids eat, keep diet diaries and have frequent blood tests.
I have an older brother with CPKU and this whole hyperhpe stuff seems even more frustrating at times since my experience makes me so wary of the uncertainty of the diets. Then again, there’s a huge difference between being the sibling and the parent…
Good luck.

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