Community Discussion Forum Parent support I’m new to all of this. Reply To: I’m new to all of this.

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The Phe levels are suppose to be between 2-6 mg/dl. So right now your daughters levels are right where a person with PKU should keep them, which means she might have hyperphe (a very mild case of PKU), then again who knows. Just like with somebody who has diabetes, their blood sugar changes with everything they eat and with PKU the phe levels change constantly. For example if I take a blood test and I haven’t eaten in hours, my level might be lower then it would be if I had just stuffed my face with a whole bunch of chicken (which of course, I have PKU so I won’t be eating chicken). I doubt her levels will ever be the same number constantly, the goal is to just keep it as constant as possible.
I hope this sort of answers your question. If her level continues to go up she may need to be more restricted in the phe she’s allowed which may mean less regular baby formula/baby food and more PKU formula. Feel free to ask if you have any other questions! I’ll help when I can! nBreanna 17 CPKU

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