PKU.com Community Discussion Forum New to PKU.com MIld Hyperphe Reply To: MIld Hyperphe

#6342
Avatar of Meaghan
mayrogers13
Member

The doctors know the amount based on his current levels. you are never to introduce “unreccommended” foods without their knowledge. If his levels are too high or low they adjust the amount of protein he can have accordingly. Every food has a set amount of protein in it and that is how the ounces of a certain food is determined. Everyone has to stay on the diet and the formula for life. Yes it is inconvienent but there are so many worse things that he could have, hyperphe is not all that bad. There is a pill to block phe absorbtion but most doctors do not recommend it. This is because it does not get rid of PKU, it only allows you to have more protein. You would still have to be on the diet and take medicine. Honestly, I dont see it as worth it. I’m allowed only 5 grams of protein a day and I am doing great! Meaghan 18 with CPKU

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