Community Discussion Forum Parent support Low Levels in CPKU Preemies HELP PLEASE Reply To: Low Levels in CPKU Preemies HELP PLEASE

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Thank you. I’m hoping to become a medical geneticist someday, so I’m glad that before that even happens I’m able to help other PKU families .
Low levels can be dangerous. People with PKU still need some phe to grow properly. The way my dietitian explained it to me is that if we don’t get enough phe our bodies will begin breaking down the protein in our muscle to get the phe that we need. I personally have noticed that when my levels get too low I am always tired.
The only way to get his levels to increase is to continue adding more phe into his diet by increasing the amount of breast milk or baby formula that he is allowed. On the positive side if his levels are low that means is phe tolerance will increase and he’ll be able to eat more then he has been! nBreanna 17 CPKU

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